This is The Squirrelly, looking you in the eye.
If you met The Squirrelly in person, this is not something you'd likely see. As you entered the room he might glance briefly in your direction, but would then return to whatever he was doing before and probably ignore you thereafter. Any effort you made to catch his eye would almost certainly be in vain.
The technical name for this behavior is "gaze avoidance," and it is one of the symptoms of autistic spectrum disorder (ASD). The Squirrelly was diagnosed with ASD two weeks ago.
The possibility of ASD was first suggested by his daycare provider in August. The Queen was worried; I was skeptical to the point of dismissiveness. This was the same woman who, just three days after he took his first steps, urged us to take him to a foot doctor because he "walked funny." I assumed that this was just another overreaction on her part, and one (like the "walking funny" comment) that she would never mention again. Instead, she brought it up several more times over the course of the week. It was clear that she was sincerely concerned.
Of course we'd noticed that The Squirrelly was idiosyncratic -- his phenomenal ability to tune us out, his reluctance to adopt gestures such as hand clapping, the (slight) delay in his speech -- but we'd just chalked it up to his personality. Our only real worry was over his intermittent response to his name, which had us wondering if he might have a hearing impairment.
But we'd never seriously considered the possibility of autism. Still, The Squirrelly had an appointment with his doctor scheduled for the following week, and we figured it couldn't hurt to ask.
The pediatrician noticed the same things the daycare provider did, foremost among them his lack of eye contact and seeming indifference to her presence in the room. She suggested that we enroll him in the Toddler Assessment Project, a University of Washington study to identify ASD in children as young as eighteen months. We did so immediately.
The clinicians at the UW Autism Center conducted interviews with The Queen and I regarding The Squirrelly's behavior, and we brought him in for observation on a number of occasions. After the fourth such visit they had seen enough to officially classify his symptoms as those of autistic spectrum disorder.
* * *
"Autistic spectrum disorder" is an umbrella classification for a group of closely related pervasive developmental disorders, including autism, Asperger's Syndrome, and (arguably) attention-deficit hyperactivity disorder. The word "spectrum" is in recognition of the fact that people with ASD vary widely in their impairments.
Of the five major areas that characterize ASD -- social impairment, language impairment, imaginative impairment, repetitive adherence, and sensory integration dysfunction -- it appears that The Squirrelly's symptoms lie mostly (and perhaps exclusively) in the first three. He doesn't engage in rocking or arm flapping, doesn't have affinities or aversions to specific textures or sounds, and doesn't insist upon sameness and routine. That's good news, as these things go. His physical development is, if anything, a little ahead of the curve. And while it's really too early to start making predictions about his cognitive skills, he appears to be right on track.
But his "gaze avoidance" tendencies are unmistakable, and he makes very little effort to communicate with others. He knows dozens of words but only uses them for labelling. Show him a banana and he'll say "banana," but if he wants a banana it apparently doesn't occur to him that saying the corresponding word to us might provoke a response. When he is in the company of other toddlers he plays around them rather than with them. And he rarely engages in imitative play.
It seems likely that he is high-functioning. One possibility is that he has Asperger's Syndrome (AS), which is a relatively common form of ASD. People with AS have normal to high intelligence but great difficulty with social behavior. There's probably someone in your company's IT department with a touch of Asperger's. Albert Einstein and Bill Gates are both suspected of having AS, so, who knows: we might wind up with a genius or a bajillionaire in the family. Even Dan Ackroyd has AS, which, for some reason, comforts me to no end.
But, at this point, all we know is that The Squirrelly falls somewhere on the autistic spectrum.
It's worth noting that he will make eye contact with me and The Queen for long periods of time, though he does so infrequently. I wouldn't characterize him as overly affectionate, but he loves roughhousing with his father, sitting in his mother's lap, and getting hugs from either. He cries when one of us walks out the door, even if its just to get the mail. Most importantly, to my mind, he has a great personality, he laughs a lot, and, in general, is an exceptionally easy-going and happy kid. Honestly, what else matters?
It goes without saying that we are anxious about his future, and have lost sleep since receiving the news. But that's when we tend to fret: when he's asleep in his room and we're awake in ours. Or when we are at work and he is at daycare. Or whenever he's not around. When he is around, though, it's almost impossible to worry about him too much. You can't spend any time in the company of this kid and not think that, regardless of the diagnosis, he's going to turn out awesome.
* * *
Of the aforementioned ASD symptoms that The Squirrelly is exhibiting, "rarely engages in imitative play" probably seems like the least of them. Actually, this one turns out to be a sticky wicket (as they say, um, somewhere, I think). Imitation is, after all, how toddlers learn a lot of things -- they see their mother use a spoon, so they decide to try using a spoon themselves. Most parents take it for granted that they can teach their child by demonstration; when that option isn't available, things get a bit thornier.
So the first thing we need to do is teach The Squirrelly how to learn. The mostly widely accepted method for doing this is called Applied Behavioral Analysis (ABA). The Queen and I have spent the last few weeks trying to arrange ABA therapy for The Squirrelly, but it's proving to be something of a chore. Autism is on the rise in the US (even when you account for improved diagnostic techniques), but the increasing number of ASD cases is not being matched by a the growth in autism services. Consequentially, many organizations that offer ABA now have outrageous waiting lists and fees. Demand is running roughshod over supply.
So curious as it may sound, The Squirrelly's diagnosis came as something of a relief to us. The Queen and I have been devouring books on autism ever since the pediatrician seconded the daycare lady's suspicions, and by the time we brought him to the UW we were already convinced that he had some form of ASD. But hunches aren't enough to seek treatment. To gain access to the ABA clinics, you need an official diagnosis; once we had one we could start arranging for intervention.
The Squirrelly continues to go to the UW Autism Clinic of assessment visits. He will receive an MRI on the 28th. In the meantime we have begun incorporating ABA principles into our daily interaction with him and scheduling therapy sessions. Research has shown that intensive therapy can work wonders on children with ASD, assuming its caught early. As The Squirrelly was diagnosed at eighteen months -- about as early as ASD can reliably be identified -- we have every reason to believe that he will be very responsive to it.
* * *
And now, a story.
For about a decade I didn't eat horseradish. My mother served it to my sister and I when we were kids, but I never touched the stuff after I left the nest. It wasn't that I disliked it, but I'm not much of a condiment man and never felt the need to slather it onto to anything.
Fast-forward to my late twenties, when The Queen and I were visiting some friends. I had just finished telling a story and The Queen had launched into one, so I grabbed something to snack on from a nearby plate of appetizers. All of the food that I liked had already been eaten (undoubtedly by me), so I took one of the salmon fillets. And because I wasn't wild about fish, I decided to mask the taste by loading it up with the accompanying horseradish.
I realized it was horseradish that I was putting on my salmon, and I remembered that horseradish was hot. But there were two other factors in play. First, when you get older you often find that the foods you thought were unbearably spicy as a kid are actually rather bland, so I was compensating accordingly. Second, my friends had served us straight horseradish, My mother always given us prepared horseradish, and I was unaware that it came in any other form. Consequentially, I shoved a horrific amount of the stuff into my mouth and started chewing.
At first it wasn't so bad: just the mildly hot flavor that I remembered from my childhood. But then, at some point, I realized that it was getting hotter, and hotter, and hotter. I stopped chewing. I let my mouth hang open. Suddenly the heat doubled, and doubled again. By this point I wasn't even able do the comical "HA-HA-HAAAA!" hand-waving-in-front-of-the-mouth routine -- the horseradish was so hot that I was paralyzed, sitting there ossified while my friends laughed at the conclusion to The Queen's story.
As the feeling continued to grow I began to seriously wonder: can I die from this? Can this become so overwhelming that my body goes into shock, and I'll just slump sidewise and perish from the sheer enormity of the sensation?
I've been thinking about this story a lot lately, because I have begun to wonder the same thing about my love for The Squirrelly.
Posted on October 10, 2005 to The Squirrelly
Your attitude about fatherhood impresses me to no end. It is inspiring.
Thanks for sharing. I feel The Squirrelly is so fortunate to have great parents who will give him all he needs. We (your internet) family also are so fortunate to be plugged into your life, laughter and learning.
We all are growing thanks to the Defective Yeti.
Your old friend,
You guys kick ass. Thanks for sharing, Matt.
Best of luck to you, The Queen and The Squirrelly in all your adventures.
Don't be surprised if some of your family members do not appear to support you in the efforts to get the boy into some programs. My son was also diagnosed at 18 months on the spectrum with some of the same issues you describe. The grandparents all poo-poo'd our efforts - "he's a boy, they always develop language slow". "Don't get him special help as he'll be labeled." The fact is, if you get him help, and it turns out to be nothing, there's no harm done. If you don't, and he does go the wrong way on the spectrum, then you've just lost valuable time for getting him the help he needs.
We dealt with the less-than-helpful family pressures, pushed the school district to get him into early intervention, and now he's doing fine (seemingly can't get him to shut up now!). He's 5 1/2 now, and while his language skills are still a little behind some of his peers, most, if all, of the other symptoms have faded.
Good luck, and I hope all will be well.
Wow, Matt. Much love to you and The Queen and especially The Squirrelly as you all explore what this diagnosis might mean to each of you. One URL you might get some inspiration from: www.darn-tootin.com. A couple years ago the writer, Rob, learned that his daughter Schuyler had a rare neurological disorder ... it's been amazing to watch him grow alongside his Schuyler as she lives through her unique set of joys and challenges. xoxo
Sending good thoughts your way for you and your son.
Wow. This entry was one of the most moving blog posts I've read, ever. Your last sentence made my eyes well up.
Not having any kids yet (let alone any with medical issues), I can only imagine what you're going through. I do have a niece, however, who was diagnosed with diabetes the day after her first birthday (extraordinarily young). And what started out as overwhelming has by now (6 years later) become a simple part of who she is and how she (and her parents) live her life.
Though I don't know you, I do have some sense of who you are and how much you care for your son. And I have nothing but optimism that you, The Queen and The Squirrelly can overcome the difficulties that are now headed your way.
I was going to say, "Best of luck," but with parents as loving as The Squirrelly's, I don't think luck will have anything to do with it.
the squirrelly is very, very beautiful. and very lucky. i am full of hope for him and for you and the queen.
As a long-time reader and a big fan of your devoted posts about the Squirrely, I know how much you adore your son. An ASD diagnosis is shocking news, but the fact that you have caught it so early and are taking it so seriously bodes well. Nothing bad can happen to somebody so loved. Good luck to you all :-)
Thank-you for sharing this story with us. You have a beautiful boy who is lucky to have parents like you and the Queen.
About 2 days ago I was walking to my car at work and coming towards me was someone who looked eerily familiar. It turned out to be a bloke who looked VERY similar to the yeti and I was about to blurt out my complete respect for entertaining me almost every day etc, etc, when I realised that it wasn't him and seeing as I was in a car park in Leeds, West Yorkshire the chances were pretty slim that I'd simply bump into him. Made me think how much I look forward to yeti posts whether they're funny or poignant or informative or funny/poignant/informative. I don't know you Matthew but to me your blog is an important source of laughs and info and my sincerest best wishes go to you and your family.
Much good energy going out to you and your family. You have a beautiful little boy.
I'm a long time devotee of your site and a big fan of the squirrelly, I'm sure his diagnosis must have knocked you guys but you are handling it with grace and hope and that's inspiring. He seems a sweet, intelligent kid and that has to be down to you and the Queen. Thanks for sharing this with us.
Wow. The Squirrelly's really lucky to have you as parents; you seem to be taking this a lot better than I am at the moment...
What a relief that you are able to get a diagnosis so early. The combination of attentive, conscientious parents and an observant caregiver.
And what an outrage that the support and resources for what's an increasingly common disorder aren't readily available. We wish you all the best.
Wow. [great name, btw, congratulations all over again]
Wow. Good thoughts and good luck to you, Matt, and to The Queen and The Squirrelly especially. You seem to really have a handle on this, and based on your last sentence, it's all going to work out.
I was just making my morning rounds on the blogs and didn't expect to be so overwhelmed with emotions by this post.
I'm a psychologist, and it's really, really great news that you've got everything diagnosed and are starting treatment so early. It's a challenging diagnosis, but my nephew has asperger's syndrome and my niece has mild ASD. Both children are mainstreamed and appear to be heading towards that Bill Gates/Einstein route, and this was after they were diagnosed much later than The Squirelly.
Thank you for sharing. I keep trying to think of a way to thank you for sharing how much you love your son and how much it resonates for me and how much my love for my son has colors my whole life, but I can't think of a way to say it without sounding very lame.
We have a child in our family who is about 2 and we suspect of being autistic, for all of the reasons and then some that you mentioned. Her parents (my nephew and his wife) refuse to hear of it, so she remains a "difficult" child.
I commend you for being able to face what can be a parent's worst fear.
My nephew was diagnosed very early, and was put into a great program here in the northeast. He's now 14, exceedingly tall and handsome, and while not exactly a "regular" kid (but then again, neither was I!) he's quite gregarious and loving.
I am fairly certain you won't explode with love or anything, but you may want to take some deep breaths every once in a while, because I can tell it's not out of the question.
Good luck to you.
awesome. thanks for the great post.
I pray for the best for you and your family.
Thanks for sharing that. Best of luck to you, The Queen, and The Squirrelly. I don't think the little guy could be in better hands.
I hope "The Squirrelly" ends up on the less severe end of the spectrum (something your post hints at). Autism is a poorly understood problem, and there aren't many explanations for the recent surge in autism cases that make sense. I recently came across some research that points to a correlation between rates of autism and immigration. Unfortunately, immigration seems to be the kind of "religious" issue for some people that discourages honest research into the issue.
My 8 year old nephew just got diagnosed with Asperger's. I was his child care provider for a long time and I just can't tell you how bad I feel looking back on the times when I would get angry with him for something that I can now clearly see was part of the Asperger's and not something that he could help. So, it's wonderful you caught things so early and it's great that you had a daycare provider so willing to keep expressing her views to you (I knew something was wrong with my nephew but was terrified of telling my sister that I thought he was Autistic). Thank you for sharing.
You know, I've often tried to think how to describe the overwhelming sense of love I feel for my kids. Everything I came up with seemed trite, and sappy. Horseradish would never have occurred to me, but what do you know?! You've captured it exactly.
Thanks for allowing us to send some support and love your way. You are great parents and it sounds like you couldn't be doing any more to make sure your son has what he needs.
Thinking good thoughts for you all.
My heart goes out to you and your family, Matt. My 9 year old son, I believe, is headed toward a similar diagnosis. So far he's been diagnosed with ADHD/Oppositional Defiant Disorder, but I'm fighting with everyone who sees him to change that. At any rate, I find that it's incredibly difficult to deal with later in life and when I meet parents who have the same suspicions I did when my son was young, I tell them, "Don't wait, see a doctor now." I'm glad someone else told you the same thing. I wish you all the best.
I'm awed by your ability to share this story in such a moving way. I will send all the positive mental karma your way I can. It's obvious from the comments that you have a lot of support out here if you need it.
The Squirrelly couldn't have better parents. These past couple of weeks must have been somewhat overwhelming, but your point about your love for him being even more overwhelming shows that everybody is going to be alright. Our thoughts are with you.
Best wishes to all of you. I suspect you've already seen the "Welcome to Holland" letter (Google it if not) people send parents who encounter something they did not expect. I know several terrific kids with ASD, and I even teach some here at MIT. So maybe that Einstein/Gates thing is in your future too. I personally would want that over the Ackroyd, but that's just me.
Hi Matt. I wanted to thank you for sharing your thoughts, it has touched me more than you can imagine. I can tell just from your writing what a loving, caring dad you are. I have a close friend who's daughter is 10 and has ASD, she is doing spectacular and aside from some social akwardness most people can't even tell.
I love your attitude about this (and the last sentence was beautiful).
I have had a disability since childhood and my parents always saw me first, not my disability, and insisted that other people do the same. It's given me the tools I need to create a good life for myself. It sounds like you and the Queen have the exact same approach. The Squirrelly is in good hands.
Just wanted to let you guys know I'm glad that you've gotten a wrap on things and that I'm hoping for the best. And that follow-up story was lovely.
Matt, your love for your family and your great attitude are inspiring. Best to you, The Queen and The Squirrelly!
The story at the end was remarkable and the last line touched me deeply. Thank you.
Hi there! My son Jack has ASD so I read your column with great interest. Sounds like Jack and The Squirrelly have similar, high-functioning levels. Jack just had his 6th birthday yesterday and he is such a happy kid. He is attending kindergarten and doing just great. We owe a lot to intervention, as well. It sounds like you have observed many encouraging behaviors in your child that a lot of parents do not see. I feel certain that you can help your son build on these.
Fish oil should sort him out.
Even if he's one of the unlucky few unaided by it, it can't hurt him to try it.
It basically boils down to the brain being 80% fat and 10% unadulterated Omega-3, and good supplies of EFA being crucial to the development of nerve sheaths and brain cells. Male animals need 5 times as much EFA as females for some reason, and the primary symptom of deficit is this gradual over-focussing/social-withdrawal. (and dry skin -- a great many psoriasis sufferers are also dyslexic, and fish oil relieves both symptoms for each person)
There's loads of stuff you can go look up, particularly on mental quality-of-life degradations (eg depression, social withdrawal) being inversely related to healthy EFA intake, but this is a nice neat exactly apposite research result for you:
Quote to The Times last year by the head of the Paediatric and Adolescent Ability Centre in Richmond, Virginia (USA), Mary Megson:
"Within three days, most of the children I treat with cod liver oil regain eye contact"
Two case studies i've had personal experience of:
• my father, a lifelong part-dyslexic, at 60something could suddenly write/spell perfectly after 3 months eating oily fish 2-3 times a week
• a well-known Brit blogger (she runs the BloggingBrits blogring) has a child who's grown up with strong asperger's syndrome, such that her *ambition* was that he might get as many as 1 or even 2 "C" grades at school. i suggested about a year back she try fish oil. she wrote to me recently and said he had been predicted *several* good grades (B/C) and:
"Interestingly James said to me, just last week, that he feels his dyslexia isn't so handicapping anymore and he can "think straight" these days. He says he'll continue taking the the supplements as they seem to have really helped."
A friend's toddler began ABA therapy just as I lost my job a couple of years ago. They had to put together (and pay) a team of people to administer 20-or-so-hours of therapy a week. Since I had the time, I got trained and did therapy for about a year. The child actually has Fragile-X syndrom, a genetic problem whose symptoms mimic many of the symptoms in the Autism Spectrum. The therapy has had good results. His disability is such that he will probably never live independantly, but he is developing language and social skills. In your research, please be sure that you and the Queen get the support that you need to help ease the stress that this will put on you. Squirrelly is very lucky to have you two as parents.
Best of luck to you - he sounds much like a long-time family friend of ours who struggled for many years. He is so smart, but had great difficulties engaging with people. Last he was diagnosed with Asperger's and it has been greatly helpful. If only he had been diagnosed 28 years ago at the Squirrelly's age. Regardless, he has a great job (working with computers!) and a lovely kind-hearted girlfriend. I think the Squirrely will do well with the wonderful parents he has.
Best of luck to aall three of you...
As a parent, and based on stranger's responses to health issues of my children and friends, I was completely expecting all sorts of "wrong" comments in here. My now 5 year old spit up more than her own body weight every day as a baby and I can't tell you how many people reacted like she was an alien.
I am completely astonished and pleased by the sincere support in this comment section. There are challenges with every child and they all seem to come out of it. Being a loving concerned parent is about 95% of the battle and I think you two have that down pat.
i know you've received advice out the wazoo already here... but i wanted to commend your quick action and resolve to tackle the squirrelly's AS head on. i have a friend who is a therapist for autistic kids, and she says the biggest hurdle is always getting the parents to fully commit to the therapy regimine, which can seem cruel at times (eg, refuse to give the child a toy unless they communicate a desire for it in some way). the parents, she said, tend to come around by the end, but it's usually too late to get the most effective results at that point. so.. kudos to you guys for going at this from the get-go :-)
Just wanted to add to the "best wishes" pile on. Your posts about Squirrelly have been my favorites and I'm so happy that you were able to catch this early. That first picture is hilarious--it's totally a GQ boardroom look.
Best wishes to you and your family. My newborn nephew was diagnosed with Down's Syndrome this week, so my family is experiencing something similar.
As someone who has known you from childhood, and the Queen since the early 1990s, I know the two of you have the intelligence, flexibility, and perseverance to make this difficult situation turn out for the best. I have great confidence in you.
"You don't just love your children, you fall in love with them."
enjoy that footie pajama time. it goes by fast.
A touching post -- your devotion to your son is really moving.
My wife's family has several cases of autism which are the result of fragile-X syndrome. We haven't had any kids yet, and she's been told she's not a carrier, but there we still have a lingering apprehension about what will happen when we start having children. If any of them are diagnosed with autism, I hope that we can deal with it with as much patience, understanding, and love as you demonstrated in this post.
If you haven't read it, I highly recommend you pick up a book called Not Even Wrong by Paul Collins, which is about his own son's autism and his own search through the history of the disorder.
You have moved me to tears with this post, not that I don't enjoy your others, but I feel exactly the same about my daughter Nicole...my love and affection for her never ceases to amaze me. Good luck with the ASD, I have heard many encouraging stories from friends and family who have children with similar issues...
My boyfriend in high school had Asperger's. Aside from the occasional, inevitable "ass-burgers" comment, he had no problems in school. In fact, he was salutatorian and captain of the lacrosse team senior year. And while his tact was habitually lacking (I will never forget the look on my mom's face after he, straight-faced and completely sincere, unfavorably compared her chicken to a pencil eraser), he was one of the sweetest and most genuine people I have ever known. There was not one single dishonest or unkind bone in his body. If your little guy grows up like he did, you should consider his ASD a gift and not any kind of disability. We need more people like that in the world.
I'm also a bit teary after reading this post, and I don't normally well up over these sorts of things. I hope that the therapy goes well, but no matter the outcome, you have an awesome little family.
I have been going through your blog on and off and what I read brought tears to my eyes. I have a sister who is autistic and I know how it is for the family to go through the whole development phase of the kid. We become more sensitive and are aware of a lot of things that we took for granted earlier and our lifes change accomodating our loved one. I always believed that we were the chosen family that she was born into just to prove how strong we were/are and will continue to be.
My love and strength to you aand your family.
So lovely to read about how you feel about your beautiful child. Thank you for sharing and inspiring.
Another anecdotal tale offered to help: my niece & nephew. Both were diagnosed with ASD, but my niece was diagnosed when she was 3. Her little brother was diagnosed at 18 months. Both have done phenomenally well with the therapy, and my niece has actually been put into a regular classroom now without an aide (she's 8 now). My nephew is responding better than she did because they caught it earlier. These kids absolutely love school and can be very affectionate (on their own terms, but they'll hop up and sit right next to a new person if they take a shine to them). Their doctor believes that both of them will be entirely normal by the time they leave school, and that they can do whatever they want to with their lives.
One other thing that has helped is that they adopted a retired therapy dog--it reduced everyone's stress in the house.
Wishing you all the best with this!
We had similar concerns about our oldest boy (he's just turned 2), but it's turned out to be 'sensory integration disorder', not autism. A lot of the symptoms are very similar. Thanks for sharing your story.
What amazing parents he has. Best of luck to you. Prayers and thoughts your way.
Thank you for sharing this.
Cod liver oil?!? Sure. Couldn't hurt. As part of a plan of early, intensive, and integrated therapy.
It's really very irresponsible and insensitive to respond to a post as deeply personal as this one with a comment that implies the answer is to be found in a bottle.
I lurk and then I write... My nephew is 11 and was diagnosed PDD at about 5 and a half. He is now mainstreamed and a nearly straigh A student. Good luck to all of you.
hello there. started reading about the squirrelly when i was expecting a squirrelly of my own. this is the sort of thing that all (new) parents worry about. gradually, i am learning that the worries never go away. stay strong. the bottom line is that the squirrelly is a good boy. you love him very much. he is very lucky to have you, as you are to have him. you guys will be great.
I've read your blog forever but never posted before, so, hi. I think you're a great writer, and I especially love reading about the Squirrelly. I think he's very lucky to have you and the Queen for parents, and I think that, because of the two of you, there is nothing he can't handle. My sister's an aspie -- her word for it -- but unlike your son, we didn't have parents who were aware there was a problem. This lack of comprehension caused my sister more pain than I will ever know. Despite this, though, she's grown into an incredibly affectionate, intelligent, funny and fearless human being. She is my hero. So, while I do wish your family the very best through all of this, I know the Squirrelly is going to be just fine. Much love.
Bless you and your family: a dear little boy, and a fine future with such wonderful parents.
Thanks for sharing that. Your son is a very lucky boy indeed.
I have read your blog for quite awhile and I have never posted a comment. I feel like I know you, at least somewhat and I am glad you share snippets of your life with us. I have a squirrley of my own so I always enjoy your tales of parenthood.
I am a substitute teacher and I deal with Asberger kids all the time. They are special, intelligent and fun. However, they don't react to the same social cues as other kids.
Uneducated adults and children will dismiss them as odd and kids can be cruel in their ignorance. Should you encounter this, please see it as an opportunity to educate the uninformed. We need more people to help shed light on this syndrome.
A parent of an Asberger's child came to my class and gave a really nice presentation to the kids on what Asperger's is and what it is not. Why her child behaves a certain way and stressing that he is just a kid and needs friendship just like everyone else. It was one of the best, most positive experiences I have witnessed in many years.
Thanks for sharing and may God continue to bless you and your family.
I've been through some of this with my own son - not the same diagnosis, but subtle and neurological - and while I generally find this kind of advice to be tedious:
1) in between the doctors visits and the therapies and the scans and etc., etc., etc., don't forget to enjoy the hell out of your son. He is precious in his little footie pajamas. You will constantly be exposed to people who will think of him as a pathology with legs. Don't let their thinking infect you. Do the research, learn the vocabulary, do the exercises, and then put them the hell aside and play a rousing game of tickle monster.
2) provided you don't let him see it, it is okay to be saddened by this news. Let yourself grieve, even though you don't know for who or for what. It is true that he is alive and healthy and will grow up strong and bright. But something has changed. Respect that. Because as much as you might be inclined to cram that feeling back into its dark little hole, it will find a way to escape around the edges. Where you won't be able to control it. And in that case, it might look rather more like rage.
3) advocating for a child with special needs requires a certain degree of vigor. You will meet more resistance than you will expect. When heads need knocking together, do so with enthusiasm.
Your post so strongly reminded me of the first days of our diagnosis. It was a terrifying time. I wish you the very best.
These are the cosmic kicks in the scrotum that life delivers with such depressing regularity. I applaud your positive response and commitment to help Squirrely move forward. It can be very hard to accept that there's anything 'wrong' with our precious children.
I suspect that there aren't that many more cases of autism now than in the past, we're just a lot better at spotting it now. I imagine we all knew some people who were odd in our youth, those are the people who would now be spotted by various screenings. This is good because now we can help folks like the Squirrely cope better and excel in life rather than being odd or misfits.
How you react to this kind of news is so ondicitive of the depth of your character, love for your child and the strength of your relationship. My thoughts and prayers are with you and your family!
Our own family has seen a lot of strife and it has only welded us together as a stronger unit. My oldest son was misdiagnosed as a baby as having a brain disorder that would kill him in 6 months (he'll be 8 in February). Turned out to be a rare condition called Benign Paroxizmal Torticolis (basically migranes for babies), our daughter was stillborn and our youngest son [3 in December] has Cystic Fibrosis (no lung issues yet, and well controlled, thank you!).
Each and every one a big kick in the cojones. It's what you do after you can start breathing again that defines you. I applaud your resolve!
PS: I included all the depressing details not to compare our events to yours, but rather to let you know that there are planty of others out here who share your pains and your tremendous sense of love. If you or the Queen ever feel overwhelmed by what's going on in your lives [and we all do from time to time] remember that there are many tremendous support groups around. Sometimes it helps just to talk to other folks who have shared your experiences. People who haven't can try to sympathize, but it's [thankfully for their sakes] impossible to really understand what the parent of a child with any sort of special care regimen is going through.
PPS: I LOVED the horseradish comparison. I didn't know my heart was big enough to hold that much love, but it hasn't burst yet.
I'm not going to offer advice, because you're probably going to be drowning in it. All I'm going to say is that life does eventually feel normal again, and that I'm holding the good thought for your family while you're going through this difficult time.
Another person posted a link to this post of yours on a friends lj. The thing they and I share in common is ASD.
I started screening when I was about 4 years old. I acted deaf and this somewhat irritated my mom to no end. She'd call me or say certain things to me and I'd not respond. As an adult I can recall why I didn't respond as a child it never occured to me to try to explain myself. Anyways they took me in only to find my hearing test shows I hear above normal hearing range and I have problems with background noise when trying to hear. While I did play somewhat odd and such at that age they brushed it off and also I guess as my dad was similar my grandparents probably said it was nothing. My parents were older parents born in the 1920's and had me late in life. The youngest of 3 kids. Certain things people back then just didn't talk about. Somethings they still wont talk about even today though they have shown acknolwedgement that times have changed.
In kindergarten I proved a challange. I'd quietly follow the teacher around, I'd do many socially inappropriate things, my parroting probably drove others nuts, I'd not do imaginary play(actually by then I'd started melting or chopping up barbies because I found them weird and too perfect at home ... eventually my family learned barbies weren't a good toy for me). At one point the teacher fed up told me to go play dressup. I didn't understand the request. She explained it but she left out the bit about putting cloths over top of existing cloths. Having been taught to change in the bathroom or my bedroom and my bedroom not being near I asked to go to the bathroom. Because I didn't need to heed the call of nature she said no. She also got very angry and said just do it. So I hid behind the puppet theater and tried to change to please her but felt dammed if I did and dammed if I didn't. Another kid saw me, I went to the office, my parents were called... soon after evaluation followed.
They did image my brain and it was different. They said I had a chemical imbalance and high IQ and they felt I had MBD. At least thats what my parents said and part of what I remember from overhearing them though they typically at certain meetings would send me out so they thought I couldn't hear. As an adult I sought re diagnosis. They said both AS and other times HFA. The concensus now is I have HFA with gifted IQ, probably hyperlexia and a few other things. But I've had offers to change my label to AS because it's more socially accepted apparently. I told them no I am what I am and just because others have a problem with what I am doesn't mean I do.
I made it through the public school system in the 70's and 80's without an aide or fancy therapies. Yes I did have shrinks that offered suggestions and liked to disect me. I got fed up with them a few times and disected them back.(I hate inkblot tests... they are just an inkblot and frankly some shrinks are a bit disturbed if they are seeing things like uterus in the pic and saying that to a little kid)
I can give eye contact to certain people. Some are just ok and others there is something about them I can only give them a little or none at all. People that like to stare at my eyes give me serious heebie jeebies. In the autistic community/culture we all have different theroies on a few things but I liken my eye contact issues to similar issues seen in for example wolves on eye dominance and alpha wolves vs non alphas. Because at points I had my head held and eye contact demanded and no matter what I did I was told I was bad or lying just because I'd not give eye contact... I learned a coping stradegy. If you look at hair, jewelry, eye glass frames, collars, things on the wall behind them. As long as your eyes are in the aproximate area people will presume you are "looking" at them. After learning to do that I got hassled on eye contact a bit less.
I was a cuddly kid but only with specific people and other times I couldn't stand to be touched. I am tactile defensive and sensory sensitive.
I have heard of ABA and where I am the government does fund varients of it. They will not fund Lovaas ABA and this is for a good reason. It ticks off some parents to no end because they want it. They are given extra funding for therapy of their choice but still it's not good enough due to the rates therapists charge so they want full funding and made quite a fuss about it. You might be suprised to know that most adults on the spectrum though they are supportive of choices and a variety of therapies take issue with Lovaas and RPM method(based on lovaas). Yes some of this is our association with the old days where Lovaas electrified floors and used cattle prods on our kind as part of his therapy. In most places shock therapy isn't used or is flat out outlawed but in some countries Lovaas method people may still use shock therapy.(I have seen refrences on tv to it being used in the US as far as I know canada hasn't used it since the 80s and luckily I avoided it)
One woman I know Dianne and her friend had their children in Lovaas ABA with the same therapist. They started to suspect something was wrong. I'm not saying all Lovaas or ABA therapists are evil but this man certainly was when he knew the parents were out of the room. So the parents set up cameras. Diannes child was killed that day. During restraint and the other child they saw the therapist was abusive too as well. Since then they have not used that method with the other womans son and last I heard years ago had filed lawsuit. Another friend who passed away early this year from diabetes complications. Has appeared in a few of Tony Attwoods books. Chris, one of my best friends suffered from post traumatic stress disorder which he attributes to Lovaas ABA he had when small. I saw his reaction in person talking about the therapy he had when small so I believe it did cause him PTSD.
Based on those things regarding Lovaas based ABA I'm against it. There are many other methods out there for dealing with aspects of ASD. Hanen Speech and Language parent training program can help you with some language issues. Pediatric OT's can help you with others. Where I am there are comprehensive programs for children now. While I didn't undergo them one of my children was disabled but not with autism but had alot of similarities.(he was tested for fragile x FMR1 and genetic testable related conditions though was negative). He's 13 now and does great.
I suggest you contact some online groups. There is http://ani.autistics.org and http://www.udel.edu/bkirby/asperger/ for starters. People in both do know me though I've not really hung in certain groups for awhile. This is mostly as I was dealing with a divorce and the death of my other child from cancer. Now I'm in school again so my time gets limited.
Goodluck with things.
I'm simply speechless. The Squirrely and The Queen have found their angel on earth.
It's great you have so many people offerring helpful advice, information and support.
Someone suggested pushing for early intervention...something to think about as the Squirrelly gets older, too, is special education rights. the Washington Protection and Advocacy service has tons of information on the IEP process and special ed: http://www.wpas-rights.org/publications.htm
I have nothing to say that wouldn't sound like a lame Hallmark card, so I'll just that I think your positive attitude and the love you have for your family will make any difficulties seem small in comparison.
You've already probably heard from a million people about this, but I can't stop thinking about The Squirrely today.
I have Asperger's disorder or some ASD. What I wanted to tell you was mainly this: There is plenty of hope for The Squirrely. I am a reasonbly high-functioning, non-"weird", married, gainfully employed mother of one child.
Sure, I have had some tough times as a result of my lack of understanding of social norms. Especially in junior high and high school. There's a lot of pressure for conformity then, and there's much less so once you're out in the real world. Lots of people are unusual in lots of different ways, and ASDs certainly aren't the most bizarre or the worst!
All that said, I watch my (13-month-old) daughter like a hawk for signs that she's having trouble socializing, so I'm with you on that one! It's tough, but even "normal" people have tough times. Best of luck, but you really don't need it.
Thank you for sharing. I just wanted to wish you the best of luck for everything.
You are a terriffic person and anyone is lucky to have you as a father.
Matt, your palpable devotion to your son has me at my desk in tears.
The Squirrely is a beautiful little boy, and with the support of such loving parents, I can't imagine he won't get through this just fine.
Best wishes to all of you. I'm sure there will be difficult times, but you know you have thousands of people all over this country pulling for you.
I am heartened to see so many comments here, and probably like you am amazed at the community affected by ASD/Asperger's. My brother has Asperger's (and yep, he's of the genius variety). In many ways, you are so lucky--I realize that sounds insane at this point. But, none of the doctors you see will tell The Queen that it is her fault for being a bad mother, which is what they told my mother in 1972. You have such a wealth of resources, and how lucky we are in this city to have the Autism resources available at the UW (though frightening how overbooked they already are). You already know so much more than parents of ASD/Asperger's children did even 5-8 years ago.
I wish you the best, The Squirelly will be an amazing person. Like my brother did with my parents, the Squirelly clearly has better odds that most children in any situation, regardless of this diagnosis.
Oh, and one other thing, which I'm sure you've already more than read up on but others may not be aware of: autism is indeed on the rise, most alarmingly so within the tech sector. My grandfather was the penultimate geek: a mathematician who worked on the early Illiac/Iniac versions of the modern computer. My father and mother? Both huge geeks; scientists. My brother and I--both geeks, though he somehow out-geeked me, at least genetically, perhaps.
Geez. Your sneak attack there with the very last sentence made me cry. At work.
Hi, I'm a friend of Ranger's, and I've been reading your blog for a while. It sounds like you and your wife have a lot of resources available and that the Squirrely is going to do just fine - actually, more than fine. Basically, what everyone else has been saying.
I also wanted to recommend Temple Grandin's books on autism to you. She has a diagnosis of Asperberger's and is really quite amazing. Thinking in Pictures is the one that she talks about what growing up was like for her. She talks about having feelings and attachments to people - they just don't inform her decision-making.
I wish you all the best.
nothing new to add, just another damn that sucks!/maybe it doesn't!/you're the best dad ever! to add to the pile.
All the very best to you the Queen and that devastatingly handsome fellow in the red footy pajamas. Dang, that's a good looking boy you got there.
PS - it's amazing how sometimes the love just knocks the wind right out of you, isn't it?
It's a testament to the power both of your writing and your personality, Matt, that I was reading this post on the Squirrelly's diagnosis of ASD with breath held and fist clenched over my heart. And then you got to the horseradish story and I got all weepy. Damn you, yeti!
Listen, best of luck with the therapy. There's no question that the Squirrelly is in terrific hands. And by the way--Asberger's? No big deal. I know a lot of people with Asberger's. Most are smarter than the average bear and while they may have their quirks, none of said quirks are socially debilitating and many are quite charming. Hey, who doesn't have quirks?
About ABA--there was a terrific article in The New Yorker a couple of years ago about getting this kind of treatment. I just looked up the reference and it's called "The Autism Fight," by Susan Sheehan, from the December 1 2003 issue of The New Yorker. Here's a link: http://www.mhweb.org/mustread/articles14.htm.
Seriously, Matt? Those of us who've been following the Squirrelly, the Queen, and you via DY haven't a doubt in the world that all will be fine. And we're all behind you.
Nothing new to add to what's above except my own voice to the clamour. I've no doubt that this has been a very stressful time for you and your family; It can be a bit wierd getting supportive message from Random Internet Stranger, but you seem like a Good Guy (TM), and that makes The Squirrelly one lucky kid.
Good thoughts for you and your family, Matt...
Inner monolouge while reading this post:
"Damn, that's a good looking kid!"
"Wait, did he just say Autism?"
[stunned silence for several paragraphs"
"My god, he did say autism"
"Huh? Horseradish? WTF?"
"Best. Dad. Ever."
I have two kids, and I can only imagine the range of emotions you've been feeling these past few weeks. You & yours are in my thoughts.
From a devoted reader, thank you for sharing, Matt. My heart is bursting with hope and love for The Squirrely, you, and the Queen.
You're an awesome father, Matt. Don't let anyone talk you out of getting your son the help he needs.
I don't really have much to add that hasn't been said before, but I wanted to wish the three of you all the luck in the world. The Squirrelly's already ahead of the game by having such caring parents. My mother has taught special ed high schoolers for over 35 years now (mostly ED, but she also works with ASP kids) and one thing I've noticed over the years is that having the family being so supportive really goes a long, long way.
Parent might be a teacher, but that doesn't mean her kid's immune to typos. ASD, not ASP.
Too much code today, I think.
publishing stuff like this ?
i don't know.....
we have a 16 month old boy and we'd feel very icky about publishing anything about him that personal on the internets.
then again, he's a healthy little man.
This is an amazing post. I also read it with my eyes wide and hand over my mouth, as I have been reading this blog for some time now, this post was about the last thing I expected. My eyes also welled up at the last sentance. My work brings me in contact with individuals who have somewhat severe diagnoses of mental retardation or mental illness, and I can tell you how much I love working with this population. There is a real purity about many of them, as many of them are very genuine people. Best of luck and warmest wishes to you and the Queen.
There are few people who can get me laughing harder and harder with each paragraph, and then abruptly turn me to "ohhhhhhh" tears. You're one of them.
I'll be interested to follow the developments with The Squirrelly; thanks so much for the excellent primer on ASD and its symptoms.
Thanks for sharing, and I hope it helps you in some way to get this off your chest and out into the world; either just in the venting sense, or through making connections that might help your family in getting your son the special care and services he will need.
All of your posts about your son are truly examples of inspiring fatherhood, and this one is certainly no exeption. I am sorry for your anxiety, glad for any relief you may be able to take from having an "official" diagnosis, and truly happy for the Squirrely - his dad is clearly such a wonderful man and father that I am sure he will grow and learn beyond any expectations.
I remember when my friend found out her baby had cataracts and then that her baby had cerebral palsy and I asked her if she was upset and she said she was at first but said something on the order of "that's just stupid to want your baby to be perfect. What a dumb thing to want."
I didn't understand that entirely until I had a child. The horseradish thing that you describe so beautifully.
You prompted me to find out more so: "It is now known that early, intensive behavioral programs can eliminate completely the symptoms of autism in some children and greatly improve the lives of many others."
But what you said matters more:
"Most importantly, to my mind, he has a great personality, he laughs a lot, and, in general, is an exceptionally easy-going and happy kid. Honestly, what could be more important?"
Nothing! Nothing is more important.
Enjoy your horseradish.
I've been reading over the comments and I can't add anything original at this point. You and The Queen appear to be incredible parents and The Squirrelly and equally awesome kid. How lucky you all are.
I read the Yeti daily, and I must say that I feel a certain attachment to you, the Queen, and young Squirrely. I just wanted to tell you that one of my FAVORITE kids on the planet, my dear friend Sammy, is a 7 year old who had a nearly identical diagnosis as a much younger child. He is exceptional, and absolutely wonderful. His parents are devoted and lovely, as I know you are. I cannot tell you not to fret, but I can tell you from experience that this detemination does NOT mean your gorgeous son will lead a life less extraordinary. I have always thought that the very things that make my pal Sammy "different" are the very things that make him my favorite. Please be well - my best to your whole family.
I've never commented before, but I've been reading your blog for some time now.
Inappropriately enough, I gasped with excitement when I read this post. I've been working with autistic kids for three and a half years now, and one of the most important things you need to be aware of is that SO many kids are being diagnosed with this disorder and so many new resources are being developed that I'm sure you'll have lots and lots of support for you and your child. You're lucky to be living in such a populated area; there's got to be lots of programs that you can take advantage of. One of the most important factors in providing the best environment for your child is early action! As soon as you can start occupational and speech therapy, socialization... do it.
These kinds of kids are amazing... a definite challenge to work with, but there are aspects of the children I know that their parents wouldn't change for anything.
Don't stress too much over your son's diagnosis. Get as involved as you can in the autistic community, and be as active as possible in providing resources for your son (I'm sure you will.) Best of luck with everything. If you need to talk or ask questions or anything, feel free to e-mail me.
No advice; just support, warm thoughts, and much applause. As a devoted reader of this site for the last year and a half, I can only imagine that your boundless humor and clear intelligence will be a massive boon to you and your family as you negotiate the Squirrelly's needs. Your son is undeniably blessed to have such a father, and you are likewise blessed to have such a son.
Wonderfully written. I have two young cousins with autism (one with Asperger's, I forget the other's form). Early intervention is significant. From this post, I'd say Squirrely is in good hands :)
I agree with the others: The Squirrelly couldn't be in better hands. He is blessed to have you two as parents.
matthew - I have a daughter with autism spectrum disorder -- if you and the queen ever want to talk - or you know, email so you know I'm not psycho, I'm here. I live in North Seattle, work in Bellevue.
this is a wonderful book, probably mentioned in the comments already:
_Thinking in Pictures_ by Temple Grandin.
It will be okay.
Look at how many people love you--there's quite a lot of us who are in awe of your magnificent family, of how much love you have to give. You have so much that people who don't even know you want to give it back. I wish every parent in the world were like you and the Queen. Bless all of you.
I've been reading your blog--and forwarding links to posts to my husband at work--for what seems like forever now.
As a mom to three sons, my heart goes out to you. Early intervention is key here, and it's awesome to see so much love and support coming your way. I have complete faith that you & The Queen will do every last thing you can to help your beautiful boy.
I have been a fan now for three or four years. I come to this site almost every night, hoping for another fantastic post. You did not disappoint with this one. It has been a pleasure to read your blog as you first anticipated the birth of the Squirrelly and then as the Squirrelly joined the Yeti family. It will continue to be a pleasure to read about the challenges that I am certain you, the Queen and the Squirrelly will overcome in the years ahead.
There's a whole damn internet out here pulling for you.
As always, impressed by your words.
One thing I can tell you is that they told me is my son would never have a sense of humor or understand sarcasm. Just by never giving up on laughing with him or letting him be silly with me we've been able to get further than the original diagnosis for his creativity and understanding of humor and people.
I hope that things are always full of grand surprises for you three as well.
Another reader in tears here, certainly not my usual reaction to your posts. Matt, I think you and the Queen could get through anything with your overwhelming love and sense of humor. The Squirrelly is a lucky boy to have you for a dad. I will be keeping yall in my thoughts and prayers...
My brother was diagnosed with Asperger's before it was called Asperger's. (Hello, 1981!) And despite all the social impairments associated with AS, my brother was never without wonderful friends.
AND I CAN'T TYPE ANYMORE ABOUT IT OR ELSE I'LL CRY!
Matt, he'll be FINE!
I live here in Silicon Valley where I'm pretty sure every other software engineer has Asperger's. And sometimes I wonder if I don't have it too...
And let me tell you it's a career and life asset! We all have jobs, many (most) are noticeably attached to a significant other of some form or another, and all have plenty of friends, hobbies & LIVES! Don't let the "diagnosis" be a definer. It's just a diagnosis.
Ah, shit, man, you made me cry.
I'm glad to see that so many other people feel as I do. I hope you can feel the support.
As a father, I can give you no higher praise: You are a good dad.
I just erased a few lines of advice which, upon further reflection, I'm nowhere near qualified to give. So, just accept my best wishes for the lad's continued progress.
I didn't read all of the comments (it's pretty late here and the post was already long), so I'm not sure if this was already mentioned, but...
Assuming that you're not planning on moving, take an opportunity in the near future to contact the school district that you live in. Where I live there are special programs for children with autism which start at a much younger age than normal. Here I believe you can get assistance starting at age 2 or 3. The programs also run through the summer, so The Squirrelly will get a nice head start on school.
I spent a month or two working for this program locally when the normal teacher was on leave and it was quite interesting. It's very unlike teaching since even getting the child to play with you is an incredible step forward for them.
With 108+ comments not much more I can echo, but to say that this was truely a wonderful, extremely personal post and that you, The Queen and Squirelly are all very fortunate to have each other.
I ate horseradish once. I huge, giant heaping spoonful. I learned that was a very, very stupid thing to do, because no one told me that shit is hot.
The good thing is its not a spicy-hot that lingers, so once you swallow, its pretty much gone. hehe
I feel like I'm just tacking on to the billion other people here, but I have to commend you for opening up about something so deeply personal to your family.
I'm just glad to learn I'm not the only reader you made cry.
As far as The Squirrelly goes, I hope things go well with finding services to assist you.
I found out about 4 months ago that one of my good friends has Asperger's, and I never would have known if I hadn't been told--he's 23, has a BA, a good job and tons of friends. He just comes off as shy and smart, and has learned how to adapt to it, I suppose.
Your son is adorable and sounds like he's got a personality to match. I'm sure he'll do just fine.
Congratulations...you got a smart one:-)
I have Aspergers. I am happily married and have a son who is 8. He is neurotypical, taking after his dad. He also has dwarfism. We have a super functional and loving family.
I work full time. I have been a wildland firefighter, a marine diesel mechanic, a proud member of the US Coast Guard, and a powder coater. I am currently working on a Computer Engineering Degree. Being an aspie hasn't prevented me from having a rich and fulfilling life.
I have lots of friends and a busy social life. I like to hike, kayak, research, write, read, resolve patterns and solve problems. I have learned to get along with people. Much of the literature out there makes us out to be robots, without emotion or connection to others. As you well know, we are no such creatures. We love, we laugh, we care, we are connected to those around us. We just have slightly different processors.
There is one thing I would change about Aspergers: I am face blind. I have a really hard time recognizing when I know people. It sucks. Everyone else looks at a face and gets all this useful information, I get a fuzzy outline or something. That may be where gaze avoidance comes in...it's like looking at a blank wall, what's the point?
Because of my Aspergers, I sometimes come off a little eccentric. Because of my Aspergers, I may not look at things or repond to things the way other people expect. These can be seen as negative, but there is a silver lining...Because of the pattern resolving aspect of my Aspergers, I have been able to figure out my son's health problems. We furthered the medical community's understanding of acondroplasia. Because of my Asperger's, my son is still alive and it doesn't get much better than that.
I have 8 years experience getting services for a special needs kid and 33 as an Aspie. Just holler if you need any help at all:-)
That is about the best way to describe the feeling of being overwhelmed by love for your child I have ever come across.
Know that the thoughts and prayers of many, many people are with you, The Queen and especially Squirelly.
My how he has grown!
What a gorgeous child.
He is fortunate to have fine parents and I think he will do just great with your guidance!!
Another long-time lurker emerging here to just say good luck and that he seems to have the very best parents he could have.
I have mild ASD myself, and would just like to second what everyone else has been saying, that it really isn't that bad, especially if it's spotted early. Mine wasn't, so it came as a huge relief when I realised what was going on. I had a fairly hard time at school, but I'm in my 50s now, and happy, with friends and interesting study and so on. The Squirrelly seems to be in a very good position.
Also, I'd second the recommendation of Temple Grandin's books.
Having had experience of kids with Asperger's, I can honestly say that it boils down to the love and attention that the kids get as to how they turn out.
I don't think Squirrelly has anything to worry about on either score...
Lurker, like the others, stepping in the spotlight for a few seconds:
thanks for sharing, Matt. i read your site on a daily (where applicable) basis, marvelling at your writing, your honesty, your sense of humor, and your strength.
i'm sometimes telling myself: this guy is cool, i want to be like him when i grow up (ok, 6 months to go, now).
anyway, lots of good vibes sent your way, to you, the Queen, and the Squirrelly!
ps: if you come in France one day, be sure to warn me!
Thank you for sharing your experiences and the info about ASD.
Amazing writing. I have no real contribution to this discussion, but I wanted you to know how much respect I have for him, her, and you. It's very touching.
Great writing and best of luck to you and your family.
I was stunned by this piece of personal and direct writing. My wife was moved to tears. Saying, in one stream, "my son has ASD and I love him intensely" with such smooth, unrestrained honesty is brave and beautiful. I have some experience as the 'neurotypical' interacting with an AS person, someone close to me. Understanding the love you feel and the good things in your relationship with your son are so important and it's easy to tell that you'll continue to be a good father for him, regardless of anything else. Since just before The Squirrelly's birth, I've read Defective Yeti to laugh and be entertained by your wit and vignettes from your life. Thank you for honesty and depth in opening up about this not-so-light subject. My best wishes go out to you and your family.
Wonderful post. Your son is so beautiful, and so lucky to have such caring parents.
With you as his dad, Squirrelly will be fine. My husband has AS. He has a hilarious sense of humor and he is a very loving person.
I'm sure you'll come across this in your reading, but autistic people do not generalize from one experience very well. For example, hubby told me that when he went kindergarden he did not know where to go to the bathroom because the toilet at school was not EXACTLY like the one at home - therefore it wasn't a toilet, in his mind. He peed in the sink instead of using the toilet as a result. For this they expelled from kindergarden - "low social training". (Of course - this was back in the 60's!)
So, whenever S-guy goes into a new or different environment, be sure to show him all the aspects about the room he will need to know to function in that space. Because it will all be brand new to him. I can tell from the pix, he is an awesome lil guy!
Matt, this moved me to tears as well, fantastic piece of writing and sentiment. I can empathize from two standpoints - my two young children, who my wife and I treasure and fret over, and my only brother, an adult now, who lives with mid-to-low-functioning autism. It was a challenge caring for him as we grew up, one that I shared with my mother. I grew up fast, and learned a lot about unconditional love and care. I suspect you already know quite a bit about that. Best to you all.
We welcomed our second child into the world a few days ago and I know what you mean. I'm so overwhelmed with love for my son (our first) that sometimes I get a little misty just watching him play, knowing that he's growing up right there, right in front of me.
Our second is a healthy little girl. And going through the whole hospital experience again, it really makes you realize just how much is left up to genetic chance. There's a load of tests and any one of them could alter your whole world. Please hang in there: I wish you and yours the best.
I have read the yeti for a couple years now, I think, sucked in by the humor. The emotional range you are able to express is amazing, sir.
I have a first daughter, 3 months old, and everything about your story resonated with me... not because my experience is like yours, exactly, but because as a new parent I am amazed how worried I am for my daughter (She's sleeping too much! She's not napping enough! She won't take a bottle!) and how every decision she makes looks like some sort of symptom of something. I can put myself in your shoes so easily. I train myself to do it, riding this parental roller coaster. And I am impressed by your practical, measured, loving response to your own parental crisis.
And I am impressed that you wrote about it in a humor blog! Sir, you are ten kinds of gutsy, all of them good.
I just read your post. I volunteer at an organization that provides free surf camps for children with autism.
The ocean seems to have a way of really making the kids happy. If you're interested please check out the web site. ESPN came down this summer and filmed a clip about the camp. Information and the video is on our web site (surfershealing.org)
Many happy vibes to your family.
Dear Defective Yeti, Queeny and The Squirrelly,
I am impressed with your attitude and am ever hopeful for your future. The Squirrelly is adoreable. He is fortunate to have parents that are as dedicated to building a happy and healthy future for him as you are.
Be well, and good luck in all your adventures into the world of special needs children. Two of my nephews are special needs. One is deaf with a cochlear implant. The other is language delayed. Both are amazing and dynamic little boys who bring so much love and life to our family it astounds me. Their parents, my sister especially, are the worlds greatest advocates to these boys. They are stronger as a couple and stronger as parents because of it. Nothing like a little adversity to get you going.
I am hopeful that this turns into the greatest adventure of your life...as if it weren't already!
Your blogchild (well, one of your blog children) wishes you all the best with your real-world child, and I recognise how difficult a post this must have been to make. Thinking of you all for a long time to come.
My closest friend has a two year old recently diagnosed with ASD, and she once told me of an email forward she received from well-intentioned idiots. The "Welcome to Holland" thing, which I'm sure you've been deluged with already. Anyway, she said, "Raising a kid with ASD is in no way like planning a trip to Italy and ending up in Holland. There aren't tulips, or windmills, or even any reasonable guidebooks. There are no flight attendents or travel agents I can blame, and, most of all, I don't get to go home in two weeks."
I know this must be an incredibly challenging time for you and your family. I admire your bravery with sharing it with The Internet - that took real guts, and, I believe, is a really admirable thing to do. So many people are so very clueless about ASD, and your post can, besides being heart-wrenching and beautiful and painfully honest, help educate the masses.
There really is nothing I can say that is comforting. Its so unfair and fucked that this happens to anyone at all. You sound like you are coping admirably well, and are doing everything you can to get help for the Sqir. early. There is more snake oil than good information on ASD, but one thing everything seems to agree on is the earlier the intervention the better, so bravo. You're doing everything that can be done at this stage of things. Good luck, and keep your internet friends and family updated when your emotional state allows. We're all cheering for y'all.
I concur with most of the comments, I would like to add:
sweet pjs. really sweet.
Well, you know: pretty much what evereybody else said. Especially watus.
It is clear you have the love, the will and the energy to meet this challenge, and that is the greatest gift you can give to your son - and probably why he chose *you* to be his parents.
My 8 year old daughter has Asperger's; we could tell from the first day that she wasn't like her brothers-not much eye contact or holding. It took 2.5 year to get a diagnosis.
Her biggest stumbling blocks are the lack of appropriate social skills. You can teach academic skills, but social skills are much, much harder, but not impossible.
There are days when she is a joy and then there are days when the alter-personality shows up. All bets are off when an AS child goes with the flow. They look "normal" to everyone else, but don't act it. We get looks all the time when she is acting out. I don't care anymore. She is a delight and a wonder and looks at the world in a different way than I do.
Please keep sharing.
Thanks for writing this, it's something we're facing right now with our youngest and it seems to make things just a little better, a little less lonely, because I've read about your son before and he's just always seemed delightful, and makes me think hey, it's going to be ok for your son, and you.
He is lucky to have such great parents, it will make a world of difference I am sure.
Unbelievable writing Matt. I love you and you family so much. I am also very proud of you as a father. The Squirrely is so lucky!
I'm so glad you guys decided to tell the Internet. Finding a community of people who have lived through the same thing can be such a relief.
Also, holy crap! Your kid is a looker. He's always been one of those kids who has his adult face hiding in his baby face, but it's even more obvious since he's started to look like a little boy. He's gonna be a head turner.
"It's more tingly than hot." ~Harry Dunne
Through some convoluded connections I read your blog... I work as a Special Education teacher and have many students with ASD. I can only imagine how you feel, but know that there are many avenues for support. If you'd like you could contact PAVE (a great legal/procedural support group)also the program at the UW is excellent-- good work in going there. As for arranging for someone to come into your house push hard for it early... it is effective, especially when you have a system in place before the school-age years.
One year ago we found out our 2 year old "auto-baby" was ASD. No talking, no eye contact. Today he is at school playing, reciting colors, counting and giving kisses. Early intervention, lots of attention and...no excuses.
BTW, he's got a killer sense of humor. Enjoy your little laugh machine!
It sounds as if you and The Queen are all over this and the Squirrelley is the luckiest ever of kids (not to mention the cutest ever)! But if you need additional moral support, you may want to check out Leigh Ann Wilson's blog at: http://buggydoo.blogspot.com/
She has dealt with similar issues with her son and would be a great source of information and support.
Friends of mine have triplets and all were diagnosed with ASD when they were about the same age as the Squirrelly. That was 5 years ago. Today, thanks to early-intervention and cooperative parents, they are quite active socially, their language skills are on par with their peers (and one has surpassed this level), and they are loving, happy children.
All this is to say, what several others have posted already. You and the Queen are doing everything right. The Squirrelly is going to get the care and attention he needs from you and the various specialists within this ever-growing field. He's already a fantastic kid, and will continue to be so.
Your love for him will only continue to grow and amaze you. It will also provide you, the Queen, and especially the Squirrelly with the strength you need in all things.
This was such a moving posting. Thank you for sharing.
I see I am in the company of many of the anonymous, long-time readers of your site to have broken their silence with offers of best wishes and thanks for such a moving piece of writing.
I also wanted to remind you that you now have something more in common with Nick Hornby, which is, well... something, I suppose.
We've just added another boy to our family, (1 week and a day), and I want to thank you for adding another thing I need to worry about, (cause he also tends to not look anyone in the eyes). I think I recall that all newborns do this though, (don't they, DON'T THEY?!?!???).
Seriously Matthew, you are so totally on top of things, I'm sure this will present only challenges for you, not hurdles for the Squirrely. All my best. You rock.
It's so hard. As new parents, we're given these little creatures and we want so much for them to be perfect. And then time passes and we slowly learn that, no matter what, they'll always be perfect.
Thanks so much for sharing this.
For whatever it's worth, I'm tacking on to the pile of people wishing you best of luck, for lack of a better term. Having parents that love their child as much as you obviously do is a huge advantage for your son. I hope he is able to get the therapy he needs.
I've read you for a while, and always loved the Squirrely posts...I gasped when I read this one. You guys are amazing parents and I am sure you will do the best things for him... He's a lucky little guy. My thoughts are with all of you.
Just wanted to add to the list of well wishers, I'm a long time reader, and I've always enjoyed when you talk about your son.
From some of the earlier comments, it looks like our sons share the same name. So if you need any hand-me-down mini california licence plates, you just let me know.
Best wishes for the journey ahead.
As a huge Squirrelly fan, I wish him the best.
149 posts before me, and I don't have time to read them all, but hopefully someone said: Congrats on getting this diagnosed early. Hit it hard. Sounds like you know that already. Do everything you possibly can, and more. My niece is midlevel-autistic, but she could easily be high-level if her parents had gone all out upon the first diagnosis. I see too many other cases of parents who devoted everything to working with their children and the kids turned out better than expected. Good luck, and congrats again for taking a pro-active approach to this.
A friend has sent me to your blog. My 12yo was diagnosed with PDD (altho I think it is really AS) about a month ago. And having done some reading on the subject, I have reasons to believe that I had AS myself as a kid. (Yes, we're in the tech sector :)) Somehow I've grown out of mine. It took me some 20+ years to understand social relations and nonverbal communications, but now at 38, I have no problem with that at all. I have a good career, a good family and lots of friends (the latter was no small feat, given that I moved to a different city twice in my life and once to a different country). I was a quirky kid, my classmates teased me, I drove my teachers crazy, but back in the 70's USSR of course there was no diagnosis and no therapy. I just kept trying until I finally figured out how society works. So I would say with all the help the Squirrelly will be getting, he will definitely adjust.
My son, is going through some difficult times right now, but I think he will also turn out OK in the end. When he didn't have the Dx, that was hard, because the teachers, relatives, etc kept suspecting him of being a bad kid and me of being a bad mother. One of his therapists actually told me that he was a normal kid, he just was behaving badly because I wasn't giving him enough chores *shaking head* Now that his teachers know what his problem is, they are being a lot more understanding and helpful.
Word of warning though, I understood it from your post that The Squirrelly goes to daycare? I wonder if you can get the teachers to work together with you, help your son with his social issues etc. My son was in daycare as well, and the teachers were very happy with him because he just sat quietly in the corner and didn't talk to anybody. Basically all they wanted was a quiet kid. Then in school, he started having problems because of the exact same behavior.
Thanks for sharing your story. I must have read it 10 times.
You know how all the really great sitcoms have one dramatic episode (long before they jump the shark) that leaves you emotionally drained and in awe of the writers? That is your ASD post. The one that makes me have the ustmost respect for you and appreciate your sense of humor even more when I see the next episode (The Fine Art Of Writing).
Best wishes to you and your family.
Okay, I've read through ALL the comments so far and I second, third, etc. all of them. (Well, except that one about the fish oil... Whaaaaat? I'd have to look into that further.)
You're very lucky to have a daycare provider that is so attentive to Squirrely's development, and assertive enough to pressure you to have him check out.
Good luck to all of you!
Having taught many high schoolers with Asperger's, I can tell you with certainty that many of them do indeed turn out to be lovely, interesting, and capable young people. The star of our musical this year is one such child (he's also on the football team). Coping skills and self-awareness and self-advocacy can work wonders. Best wishes.
Congratulations on writing the most touching horseradish story I am ever likely to read... ;)
Just an aside: most kids don't normally learn to play with each other until well after they are 3 years old. Good luck! Though it sounds like the Squirrelly has got that on his side already, with parents like you and the Queen.
I've read your blog fairly regularly for a few months and this is the first time I've ever commented. I just felt I should say this...
You are a wonderful person.
Just a quick note, to join the rest above, to wish you and your family all the best! Many people talk of their "problems" but I find that treating them as "opportunities" can make all the difference--and after reading your post, that seems to be exactly how you and your wife are meeting this challenge. After being an avid reader for a couple of years now, I have no doubt that you will enjoy success in your efforts. And your final thought in your post is what it is *all* about--love for your son! That will see you through.
That was an amazing read. We've got a 4-month old and autism is one of the things I fear. This post made me feel better about it.
Squirelly sounds a lot like my son (also autistic), alert, cuddly and rowdy. You're lucky to have each other! Keep trusting him and your own intuition, and don't give into the "false despair" of those who say (explicitly or implicitly) that autism is some kind of terrible scourge. Also, I hope you think three times before diving into massive ABA-land and draining your pocketbook, free time and sanity. The claims of ABA's being "scientifically proven" are overblown. Check www.neurodiversity.com. There are some more links on my home page providing insights into autism from the real experts -- people who themselves have autism. Keep listening to your son, and those similarly wired, and caveat what you are told by "experts" who stand to profit from you.
My colleague's son was diagnosed with ASD six years ago. He and his wife have worked hard with therapists and the school district to make sure that thier son gets all the support that he needs to succeed, and he has. He is an incredibly bright 10-year-old who, with a good IEP and occasional help from a teaching assistant, is thriving in middle school.
From watching all this at a distance, I have come to believe the following:
1 - Everyone that I know who has some streak of brilliance or creativity falls along the ASD spectrum.
2 - This can work. I've read your blog over the years enough to say that your intelligence, compassion, creativity, and, perhaps most important, sense of humor, gives your son the best chance possible to help the world deal with his personality.
I haven't read all of the comments so forgive me if I repeat what others have said.
My 15 year old stepson has ADHD and Aspergers. It's rough. It's really rough. It is very fortunate that this has been discovered at such an early age. One thing that recently has been the 'miracle' for Taylor is Abilify. Thank GOD for Abilify. Of course he takes three different other kinds of meds too. But it's the right cocktail. He is in a day treatment school and has recently been allowed to attend one class a day at a regular high school. I never thought this would happen. Good luck - you are on the right track.
I am a newcomer to your blog. This is very poignant, and reminds me so vividly of my Nat's early diagnosis days thirteen years ago (now we are in A.D., After Diagnosis). He is now nearly 16. The gaze avoidance you describe we used to call, "too much joy," and "baby delight," because it seemed he was so overcome with the love in our eyes that he had to look away.
You know, when I saw that first beautiful picture in my browser, I was struck by his charisma and calm: he looks like a handsome, strong, healthy boy. After reading your post, I think the same -- and now I also know he's lucky to have strong parents who love him and will stick by him.
This sounds like my nephew's experience. His parents are working hard with him, and he was a changed boy when I last saw him, really engaging with all of us, even the out-of stae guests. :7) It sounds like hard work, but the results have been really striking.
Good luck and God bless all of you, Matt, Queen, and Squirrely.
Every morning when I wake up and the fog of sleep evaporates, I am reminded of all the reasons why I work so hard and strive to be the best I can be. Sometimes that shroud of sleep is distubed by my 4 year old running down the hall and climbing under the covers next to me at 3am and sometimes it is my 2 year old rubbing my arm as though he were trying to comfort me.
I have 4 children, each unique and charachters in their own right. Sometimes when I look at them I fear for all the horrible things in this world that could happen to them, but most of the time I think that I must have done at least one thing right among the many wrong things to have been given a chance to be a part of there lives. There are times that I know I take them for granted and I kick myself later for wasting the chance to be a part of that moment.
I understand the bursting concern as I have spent many a quiet moment watching as they play and stealing quiet memories that they will never remember but that I will never forget.
Thanks for the wake up call this morning about what matters most.
What a beautiful way you have of putting things into perspective. Wonderful, wonderful post. Thank you for saying this so very well.
FWIW - like other commenters, I grew up with undiagnosed ASD. I learned many social norms only when, as an adult, I started reading about evolutionary psychology.
People's motivations fell into place for me, and I understood how to act appropriately. Everything became easier, the anger stopped, and today I'm high-functioning (dammit!) and I've found my success.
Similar successes are sure to happen with your young Squirrel. Remember the lessons of Robert Wright, Matt, and faith unto you. Knowledge will save us. Everything will be all right.
As another huge Squirrelly fan, I wish him and is family the very best. You, sir, are a great writer!
Welcome to the club, Baldwins! My 6-year-old son has been diagnosed, all by different doctors, with Asperger's, ADD, ADHD, Sensory Integration Disorder, and PDD, which is the final diagnosis they give kids when they don't know really what to call them. It's definitely tough, but you two really nailed it with getting him early intervention - I'm really happy (really!) that you caught it so early.
At this very second, he's playing quietly and happily with his friend from next door while his three year old brother is throwing an outrageous tantrum over the existance of dogs in the world, and that's probably the most encouraging thing I can think to tell you.
What an amazingly open and honest post this is. It is so very, very touching. Your Squirrelly posts have always been my favorites and this one is no exception. Your love can be seen in every word. Thank you for sharing.
That is a wonderful picture of Squirrley! Direct and unflinching and secure. Kudos to you and the Queen.
And if you really want to share the horseradish experience with someone, get a root at the store, peel it and grind it fresh into a pan, cover the pan with the lid, take it covered to your chosen recipient, lift the lid of the pan and tell him or her to "take a wiff of this!" Please make sure you know CPR.
I almost cried reading this.
As a junior in college, I can not hope to match the insight that so many above bring to their comments. Nevertheless, I write to let you know the small window you have opened for me into the joys of fatherhood I have awaiting me later in life. For that, I can only say "thank you" and to you and your family, I can only say "God bless."
Hey Matt. My name is Josh Harmon, and I live in Southern California. I know I'm a little late to the party, but I hope you read this anyways. I'm 16 years old, and I myself was recently diagnosed with AS.
The signs were all there, looking back. My speech developed slowly. They were actually gonna hold me back a year in kindergarten for it. I had all the social issues you always read about. I responded uncomfortably to displays of affection. I arranged things for fun instead of playing with them. But no one ever even wondered if there was anything wrong with me.
About a year ago, I started reading about autism. I really didn't know why at the time, but the subject just connected with me. I read about it for a few months before I began to realize that I had so many of the symptoms. A week or so after I began to suspect things, one of my closest friends suggested to me that I might be autistic. Well, an official diagnosis followed shortly, and here we are today.
I'm obviously functional, since no one bothered to notice for 15 years. I don't lead a normal life, though. I didn't really get out a lot until after the diagnosis. Since then I've been making a conscious effort to lead a more social life, but extended conversations are unwieldly for me. I ask myself a thousand times a second if I'm doing or saying something wrong. Sometimes I get irrationally uncomfortable, but I've developed a little system with a bracelet I wear so that I can calm down fairly quickly. I find it extremely difficult to physically display emotion. Hugging is irrationally unnerving for me. I've lost a few girls as a result of that last one. Most of all, I'm lonely. I feel like I can't ever really connect with anyone. There's this imperceptable barrier between me and the rest of the world. No I'm not some emo or goth kid. I'm your average teenage boy. Well, maybe not as stupid, but you get the point.
But there are some upsides. I've got a quick wit and a high IQ, and can memorize things after reading them once or twice. I scored high enough on the PSATs so that I've got a seven inch stack of letters from colleges that want me. And I'm observant, so I can see what other people do and sort of mimic it in social situations so that I can go through the motions without really understanding why. Kinda like memorizing what keys to press to play a song on the piano without being able to read music.
Good luck with the Squirrelly, Matt. I need to make sure you know this: Even if he has trouble letting you know that he loves you through phsyical gestures, he does love you. Very much.
Well, I suppose that's all I can say about that. If you'd just like to say hi or ask me a question or something, I've put my e-mail in the link above, but you probably stopped reading these comments days ago.
Like nearly everyone here I stopped by expecting funny and now feel like time stopped as I absorbed what you wrote. Love and more to you and the Queen and Squirrely.
You guys sound like great parents and really level headed people. And, man, there is just no way of mistaking that is your son. The resemblance is uncanny.
We have an 11 month old daughter and I know exactly what you mean. I sometimes think my love for her will simply overwhelm me. Thanks for making so many of my evenings better with your wonderful writing and best wishes for the Squirrely's therapy.
matt, my god, what an amazing post. I really don't have the words to respond articulately and thoughtfully, but please know my thoughts (and the thoughts of all your many, many fans!) are with you.
Thank you for your post. It meant quite a lot to me since I have been enjoying your writing for about a year now, coincidentally the same period of time I have been strugling to learn about my child's ADHD.
The possibility of this diagnosis was first presented to me during his Kindergarten year, when I was finally made to realize that his activity levels weren't just an expression of energy that should be accommodated in our sedentary 21st century, but, in fact, indicated that he was "off task" significantly more than other children, and would forever have difficulties because of it. The fact that my child can be accommodated in mainstream schools is both a blessing and a complication...I am forever agonizing over my choice of environment for him.
Ever since the diagnosis I've been playing catch up, trying to weed through the fiction presented in the media and on the internet about ADHD.
For the first time this year, I've investigated Occupational therapy designed for sensory integration, which I always thought had nothing to do with ADHD. It startled me when I looked at your website and saw ADHD included as (perhaps) part of the Autism spectrum, yet it was also one more Eureka moment in a series of many.
While I am glad enough that I don't have to deal with some of the issues typically associated with ASD, I do envy your early detection of the problem, and the EI resources that you and your family have been proactive enough to discover.
Good luck to you and your wonderful child, and thank you so much for letting us into your life.
Thank you for a beautifully written piece.
Hey there -
I've read your blog often, but never commented before. Oddly enough, I was just reading some stuff on autism just last night. Being the parent of an autistic child sounds incredibly difficult. Something from which you never get a vacation. You seem to be an incredible father, very intelligent and loving. Your will will be tested to the extreme, so I'll be wishing you the best continuously.
One small piece of advice I'd give (who the heck am I to give advice???) is to not forget that your life and especially your marriage is important. In the rush to give all of your attention to your son, please don't neglect to pay attention to yourself and your wife, or the problems will be exponentially compounded. It will be quite an arduous path, but you seem to be as well suited as anyone for success.
(oh yeah, and I echo all of the above comments your being a fantastic writer).
As someone said earlier (I didn't read all of the comments), that last line was beautiful indeed, and that picture is adorable! You sound like a great dad and wish you and your family all the best.
I have been reading you for almost as long as I've been blogging myself. Best wishes with the therapy you are implementing. Please keep writing--it keeps me sane (me writing and reading yours, too).
As others have noted above, I'm sure you're up to you ears in advice and information. But there is a blogger I like to read who has an autistic son. She has a wonderful blog about her life with him and her other kids: http://shroomhead.blogspot.com.
Your daycare provider is awesome. So is Squirrelly, and he will be fine. There isn't a kid born who doesn't have some weaknesses to overcome. Squirrelly is lucky to have both an early diagnosis and two fantastic parents who can help him learn the things he needs to learn.
This post makes me think that maybe blogging isn't just a giant pile of doo. Brilliant job, man. Your choice of endings was amazing.
Hi. What a lovely piece. Our son is 13 and was diagnosed with extrmely mild AS about four years ago. He's a great kid: the first inkling that something was amiss was when his school teacher realised that if she asked him to do A then B then C he'd hardly ever do all three, and usually just either A or C. He likes familiarity and repetition, though not in a Curious Incident of the Dog In The Night-Time way. He likes to watch the same DVDs over and over again; to eat a fairly small number of familiar foods (the list griows each year though!) and he does flap his hands when excited. He's not unusually high-functioning in any areas, though he has an excellent sense of rhythm, and seems to be picking up French pretty well in school. He's not good with figures of speech, which he sometimes takes rather literally, but he's good at drama. People who meet him usually don't think he's any odder than the average teenage boy, and I'd think there's a good chance the Squirrelly will be the same. He'll charm everyone's socks off anyway.
All the best of luck to the three of you.
One might say I can be quite a tough cookie to crack.
Happened upon your site and read your entry for Oct 10th, and my eyes have an unfamiliar liquid in them.
My child has been quite ill for going on 7 days with no end in sight. Two MDs are stumped. We do not know what to do. Your final summation is brilliant. Thanks.
Your son is so lucky to have you.
I too have a 4 year old son diagnosed with ASD at 2 1/2.
ABA is amazing. Get him into a professional program as soon as you can.
You may not be noticing sensory issues now, but you likely will as your son gets older. Beginning ABA now may help to offset the sensory issues as they are often a coping strategy for children who have difficulty with communication and are coping with sensory over and underload at the same time. ABA will help your son make sense of his world and learn to communicate - and can even help him integrate his sensory experiences more effectively, so by implementing an ABA program you may be able to cut the sensory issues off at the pass before they have a chance to come in full swing (or flap, as the case may be!).
By the way, hand-flapping, etc. is considered "self-stimulatory behaviour." Most commly referred to as "stims."
You have done a great job educating yourself - and your blog readers - about ASD.
Good luck on your journey. There's a long road ahead, but it's rewarding.
It's posts like this that have restored my faith in humanity. Thanks for hsaring.
(( sorry for teh typ-o ))
I miss a few days here, and came back to see this post and too many replies for me to read.
I don't actually know you, I've just become a regular reader here for a long time after following a link another blogger made.
But from the opinion I have formed of you from reading your blog, I have to say that no matter what challenges this throws at him, The Squirrely is gonna be one lucky kid to have you on his side.
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Wow. What a great story. Given your views on fatherhood and the obvious love you have for your son and wife, I'm sure this development won't present a problem for you. With you and the wife in his court Squirrelly will do just fine.
i happened upon your blog a couple of weeks ago, and enjoyed your writing -- intelligent and funny. i read this recent entry and want to thank you for sharing it with us.
i send my love to you and your family. this cannot be an easy time for you, but i hope it helps to know that you are in the thoughts of many many people.
the squirrelly is blessed to have parents like you.
I have been thinking of you and the Queen and the Squirrely since I read your post a few days ago. I remember vividly the early days with our own son, now 15 years old. It's confusing and frightening right now, but it will get better. This year our son made the honour roll at school. His interests are sports and politics, and he helped campaign in our recent provincial election. After graduation he plans to study multi-media at technical school. We still worry about his future, but not nearly as much as when he was little. Your positive and curious attitude will help. Stay hopeful, but don't be afraid to let yourself be sad too. Squirrely is lucky to have you and you to have him. mp
The Squirrelly's in good hands. My wife's a school psychologist and praised both your attitude and the fact that you got such an early diagnosis. The earlier you catch this, the more opportunities you have for help and support, not to mention the educational approaches you mentioned.
I've wondered many times if my heart was just going to explode from my emotions about Oliver, so I get the horseradish thing. Boy, do I get it. Especially after our near-sorta-not-quite-but-it-felt-like-a-near-death experience on Saturday, I just cry every time I think of anything - a paper cut, whatever -
happening to him. So I have gobs of empathy for you, the Queen, and the Squirrelly.
Oh, and as far as magic elixirs or treatments go, try a big jar of good jellybeans - Jelly Bellys or the like. Not for the Squirrelly - for you. Everything looks a little better after a couple of handfuls of jellybeans. I'm totally serious about this recommendation, and I'm not a dealer. But dude, it works. There's this great stuff in it called "sugar" - it naturally appears in high concentration in jelly beans. It not only helps the mind and spirit, but you may find that you have more energy for a brief period after taking the jelly beans (http://jellybelly.com.) Look into it, and tell what you think.
My son is moderately dyslexic and we have a long friendship with a family whose son finally got a diagnosis more along Squirrelly's lines (still no final name applied, but in the spectrum). The boys really enjoy each other's company, so, even though we live pretty far apart, we make an effort to get together.
One thing for my son's friend that would have been nice to have addressed sooner is fine motor skills. Writing is an anthema to him and refusing to do it mostly is getting in the way of schoolwork. Testing that identifies such things so they could be worked on before society's expectations get high in the arena could be a very great help.
My son's dyslexia makes it a constant grind to get through homework, a never ending process to educate teachers, but his flashes of understanding and insight make it very worth it. He has so much to give to the world.
Thank you for sharing this story.
My own son, now an adult, is a homeless wanderer. We have no "diagnosis." My sister is dead from anorexia. My cousin is schizophrenic. My dad says we all have our own sets of troubles. He is right.
Be happy anyway.
I love your posts, your sense of humor, and most of all your devotion to Squirrely. This post made me cry, as it seemed to make everyone else cry. I adore my two-year-old nephew so entirely that I cannot imagine loving a person even more. If he were my son, I think I would explode.
You have plenty of people here with you, and you're probably overwhelmed with advice. But if you want some, here are a couple more:
--I read a thoughtful, gorgeous written blog called My Son Has Autism. (mysonhasautism.blogspot.com) Christina is a professor in New Jersey, with a beautiful little guy named Charlie. Every day, or close to it, she posts stories about living with him, in these gracefully written posts. I think you'd appreciate it.
--Also, many parents with autistic kids report a huge difference if they take their kids off gluten. The medical establishment is just starting to catch up with this, but I hear anecdotes from parents all the time. I have celiac disease, which means I can't even eat a crumb of the stuff. Because of my blog, I hear from people all the time who tell me that cutting out gluten really helps. Maybe for Squirrely? It's not as hard as it seems. It's worth a shot.
Finally, I have to say that I've taught a number of "high-functioning" Asperger's kids at the wacky high school in Seattle where I teach Humanities. And they are funny and alive, smart and indelible. They're not Asperger's patients. They're just a bunch of Squirrelys.
Best of luck on the path.
If you're at all interested, an insightful, funny, bullshit-free and humane book you might want to tackle some time is Charlotte Moore's 'George and Sam', about her two autistic sons. No, wait, come back! It's not the normal triumph-over-adversity heart-warming schlock. It's just really interesting, really well-written and really funny.
Your (moving, honest, incredible) ASD post has been turning over in my mind for days, and your family has been in my thoughts. You've already received hundreds of good wishes, and you can throw mine onto the heap. A person can never have too many.
With 202 comments, I'm pretty sure there's not much going on in my second floor that hasn't been said already. But, as a long time reader, I just wanted to add my well wishes and confidence in your son's bright future.
Hi there Matt,
I don't know you, but I enjoy reading your funny observations on life and the like. This post about your son is so very moving, and my best wishes are with you and your family. I am a behavoir modification therapist for children with ASD. You mentioned you were looking into the ABA program for your son, and i would just like to recommend another program that is out there, RDI (relationship develoment intervention). It is a relatively new program, but, depending on your son's needs, may be a great help to him. You can learn more information about it at www.rdiconnect.com . My best wishes to the The Squirrelly!
Several thousand miles from seattle, without knowing you, I was moved when the Squirrelly was born, more than I ever thought possible. And now again. Respect and sympathy for you all.
The best thing that can be done for any child, regardless of disability, handicap (a disability is only a handicap if it is significantly impeding on two or more areas of one's life) is to remember that the child is still a child!
So roll over, go back to sleep and relax. Your little boy has wonderful parents and he will be FINE. Encourage him to socialize with other kids (start with settings that are comfortable to him), encourage new kinds of toys, just like you would with any other kid. It just might take a little more perserverance. The diagnosis is only important to the doctors and clinicians. He is still a little boy who loves his mommy and daddy and his footie pj's. Any good doctor or teacher who ever works with your son should understand that.
Thank you so much for your quality links. They were very helpful to me in initial quest for knowledge.
Just want to add my admiration to you, the Queen and good wishes to the Squirrely.
my son attended u dub's autism spectrum group for awhile. they have an awesome program there. he's 11 now and doing very well. it's a good start, those guys. best wishes!
Thank you for sharing this, it has truly touched my heart. Your young lad will surely grow up and touch your heart in ways you thought were unimaginable. I have on my desk a "pencil holder" made by an autistic boy at the Higashi School in Boston, here's the link:
They are a school specially created for autistic children. They have a craft fair once a year and I buy all kinds of the children's artwork as gifts for people. This green glazed, made out of clay pencil holder is something I cherish.
Keep smiling! It's a journey that has just begun.
My son is 7 and has an ASD. Once you get over the shock, you will all be fine. He's the same kid he was before the labels. I think kids with ASD have the potential to be the coolest people in the universe. They see things in a different way from the average person. Hang in there and keep up with the recommended therapies.
I've been reading you for a while.. I have Asperger's Syndrome, as does my stepdaughter. So the good news is... life doesnt end with AS.. although sometimes it feels like it will :) You should check out the OASIS AS board.. lots of parents of kids with AS.. good company :)
I think you should write a book!
Your little story was hugely entertaining and well written, as well as being poignant and emotionally heartening!
All the best,