The results are (almost) in April 14, 2010 11:57 AM   Subscribe

A follow-up to my AskMe question about my son's language skills. It's a bummer.

So I finally screwed up the courage to get my son now 3 years & 9 months assessed for a language disorder. Part my reluctance to act was the hope that I was overreacting and he would somehow catch up. Unfortunately, while he gained language skills along the way these past few years, there was never the typical "language explosion".
So far, he has met with two psychologists, two speech pathologists and one education specialist. There had been some discussion of a possible sensory integration disorder but it wasn't until this morning that anyone mentioned that they were assessing him for a "pervasive developmental disorder"; in other words, an autism spectrum disorder.


On one hand, I'm relieved that I know and glad that I finally followed my gut. On the other hand, OMGWTFBBQ!!! I don't know how I will help him successfully navigate the political complexities of the school yard.

If there is anything to be learned here from my experience it is "trust your gut". I wish I had done this a year ago.
posted by echolalia67 to MetaFilter-Related at 11:57 AM (31 comments total) 4 users marked this as a favorite

Ooh, sorry. Did the professionals indicate that he could have avoided any of the downsides had they treated him sooner?
posted by crunchland at 12:00 PM on April 14, 2010

No, if anything they have been very reassuring about the timing of the intervention. They said that it great that we are intervening this early on and that they are optimistic that he can be helped because he shows strength in many areas. He's on schedule with colors/letters/numbers, displays great creativity in his play and is pretty outgoing.
posted by echolalia67 at 12:08 PM on April 14, 2010 [1 favorite]

Well, I'm glad there is some good news in with the disappointing news. And now that you know the specifics, you can address them, which is certainly better than not knowing and not being able to choose the best course of action.
posted by Astro Zombie at 12:16 PM on April 14, 2010 [2 favorites]

Let me tell you what. I've had the extremely awesome opportunity to work with many young people with autism spectrum (and other, often emotional) disorders in the past, and as far as "handicaps" (hate that word) and "disabilities" go, I've never met a single person who wasn't Amazing. I think that we can expect to see an explosion in the neurological research of people with autism in the next 20 years or so, and I think we're going to see some amazing treatments for for all people (autistic and otherwise) as we learn more about how what does what inside their brains.

I wouldn't honestly think of this as a "bummer" so much as I'd be realizing I need to relearn how to learn. And then at some point you'll realize that the way he learns is so much more efficient than how you learned what you learned, and the way his brain decides what's worth keeping and what isn't is so much more amazing and efficient than what your brain does, that you'll never not be amazed.

Some of the folks I worked with who have SID are among the most brilliant and creative, honest and open people I've ever met. I'm not saying this in a mushy-gushy way, I'm saying it in a matter of fact way.

My point is, don't let this get you down. His body functions work right, he's ambulatory, his mind is bright and so is his future. He's gonna be awesome (I bet he already is) and you're gonna be a better person for all of it.
posted by TomMelee at 12:20 PM on April 14, 2010 [9 favorites]

My son has SID, diagnosed at age three. He was also evaluated for autism spectrum disorders and ADHD at age seven - he tested off-the-charts for ADHD and definitely on the spectrum, albeit very high functioning. He's now 13 and is a red belt in Taekwondo, plays string bass in three orchestras (he's first chair in all of them), is in the gifted program at school and has been "recruited" by a nationally recognized gifted program at a large university. Oh, and he has friends. Really good friends.

All that to say: your son is getting help, imagine the possibilities! I never, ever would have thought, ten years ago, that we would be where we are today. But we are! We had/have help, we advocate like crazy for him, and mostly we're just really proud of what he's done on his own.

It's going to be hard to stay positive all the time. You're going to have ups and downs. The ups are going to be exhilarating and the downs are going to be devastating. The most important thing to remember, all the time, is that you're doing the best you possibly can for your child. No matter what, you love him. And it really sounds like everything is going to be okay, in the end.

Good luck, and please feel free to memail me if you want to vent or anything.
posted by cooker girl at 12:35 PM on April 14, 2010 [6 favorites]

I don't know how I will help him successfully navigate the political complexities of the school yard.

Have faith that you will. You might not get it right each and every time, but you will be his Mom, and you will fight for him, and advocate for him, and do everything you can to help him to shine. Above all, you will give him constant, unconditional love. That is no small thing.
posted by bunnycup at 12:41 PM on April 14, 2010 [2 favorites]

I'm glad you've learned from the experience to trust your gut. You're going to have to be strong advocate for your son over the years and a lot of the time you'll feel like an annoying pain in the ass to teachers/parents/strangers/etc. It can be a fine line between advocating and overreacting but it's better to err on the side of wanting more (services/time/chances) for your son than asking for less than what he needs.

You will beat yourself up many times as he grows up and maybe after he's grown (I don't know yet; mine are teenagers now and I've got a u-haul full of regrets where they're concerned). I have found a quote by Emerson to be really really helpful over the years in reminding me that there's only so much I can do, and some of it I'll do wrong, and although I need to do my best every day, that's just the way it is. I wrote it on the wall right next to my bed, and I remind myself of it often:

"Finish each day and be done with it. You have done what you could. Some blunders and absurdities no doubt crept in; forget them as soon as you can. Tomorrow is a new day; begin it well and serenely and with too high a spirit to be cumbered with your old nonsense."
posted by headnsouth at 12:43 PM on April 14, 2010 [3 favorites]

There are so many resources that are available to kids with PDD! I do individual and group (social skills development) therapy with kids who have PDD and PDD-like issues, and I see those kids experience so much positive growth in little ways and big ways over time. Your little one can be a perfectly happy and successful person. PDD does not preclude that, by any means.

You won't have to be the only one to help him navigate his world. You will be an ever so important part of and support in that process, absolutely, but it isn't something you've got to figure out on your own. You're already on the road to giving (and getting) your little guy the help that will be so valuable to him, that will help him thrive. You're already doing a great job. :)
posted by so_gracefully at 12:54 PM on April 14, 2010

sorry about the news. i know this might come off as maudlin, but it's true: the fact that you not only noticed something was going on but then cared enough to take your kid in for testing means he's already got a big advantage. i know many people with disorders whose parents just refused to acknowledge anything was going on and so never got them any help and they finally had to advocate for themselves as adults either when they left home and got to college or started working, after years and years of having a harder time than they really should have.
posted by lia at 1:04 PM on April 14, 2010

Dear Echolalia67,

I totally understand what you’re feeling because we’re living with that diagnosis as well. It’s totally normal to be sad, upset, confused. It might cause some stress between the parents because it’s just so shocking and overwhelming. You love your son…he’s amazing in so many ways that’s it’s hard to grasp that he (and you) are going to be grappling with possibly some significant issues regarding his schooling, social development etc. It’s okay…he’s still the same great kid he was yesterday…it’s just now you’re going to get lots more support to help him achieve his potential.

Depending on where you live, there is probably a pretty well-developed system for helping kids with these issues before they get to kindergarten. We were able to get our son into a preschool that provided both one to one special education and an integrated classroom setting to help with social development. With that intervention, my son was able to enter kindergarten on schedule and has been doing great all year. There are ups and downs, but we’ve met some wonderful parents, therapists and kids and feel so lucky at the progress that’s been made in the field in the last 10 years…it’s pretty significant.

Anyway, feel free to memail me with any questions or concerns. Every family approaches these issues from a different perspective, so don’t be intimidated if you meet people that seem really on top of everything (current research, what this school is doing versus that school, which developmental pediatricians are best etc.). The main thing is to relax, stay calm and just do the best you can for your son every day. It’s going to be okay.
posted by victoriab at 1:17 PM on April 14, 2010

Sorry to hear that.

This book has great social tips. Really practical and overall, a very upbeat book, full of ideas.
posted by internet fraud detective squad, station number 9 at 1:36 PM on April 14, 2010

I was recently diagnosed with Aspergers. I'm 44. From my perspective, your kids are lucky to have you, knowing right now what's "wrong" with them, when they're still very young. I'm deliberately putting "wrong" in quotations, because "every disadvantage has an advantage". Your kids are going to be beyond great at one or two very specific things. You already know (or you're about to find out very soon) what they're not going to be great at, so you'll be able to help them. Your kids are going to be special, and I mean that in a very positive way.

So yeah, sure, things may look a bit scary and "what now!" at the moment, but you're going to do fine. and as cooker girl says, Good luck, and please feel free to memail me if you want to vent or anything.
posted by DreamerFi at 2:21 PM on April 14, 2010 [1 favorite]

I have a friend who was concerned about her son's language and other development at around the same age. After a lot of research, she decided to remove gluten from his diet. Within a couple of weeks he had progressed from disjointed jangled words ("I do dat?") to fairly complex sentences ("Mommy, can I do that?"). Removing dairy increased his abilities to the point where he was reading three letter words. She also said that removing gluten made him much more emotionally resilient and allowed him to, for instance, be able to play outside without dark sunglasses.

Of course all kids are different and this might not apply to yours at all, but seeing the immense difference in her son, I feel duty-bound to mention it.
posted by Addlepated at 2:24 PM on April 14, 2010

I don't know how I will help him successfully navigate the political complexities of the school yard.

Hey, that's one I might be able to answer. The kids I know on the spectrum qualify for special ed, and their teachers spend a great deal of time working on social skills. Soooo... "don't worry" isn't realistic, I know, but there are support systems out there for kids like your son. My son is in special ed -- he qualified when he was just a little bit younger than your guy -- and I can blather on about it at length, if you want. (Free preschool! Score!)
posted by The corpse in the library at 3:05 PM on April 14, 2010

On the practical level, have you hooked up with Regional Center yet? I know you're in California, so if you want to send me an e-mail I can give you a referral to your local parent training and information center, who also might be able to help out.
posted by infinitywaltz at 3:53 PM on April 14, 2010

I have no experience with this, but it sounds good that you know what the deal is now.

I just popped here in to say that this thread is one of the things that makes Metafilter a great place to hang out.
posted by marxchivist at 4:20 PM on April 14, 2010

My cousin has Asperger's and ADHD, and I just wanted to chime in that she is the most awesome, sensitive, adorable person. She had a lot of language problems as a toddler, (like your child, this is what tipped her parents off to get her evaluated), but now she speaks pretty normally. She's 16 now and I'm so proud of her! She has definitely had a lot of struggles, both academically and socially, but she had a lot of training/therapy/etc and she is doing extremely well. She has friends, is a terrific equestrian, is amazing with animals, and has had a boyfriend for three years! Just an anecdote that a diagnosis of an Autism Spectrum Disorder is not a "death sentence" for your child.
posted by radioamy at 4:31 PM on April 14, 2010 [2 favorites]

infinitywaltz: the speech pathologist gave us a referral to the SFUSD (unified school district). Our pediatrician agreed that the school district would be a better way to go, seeing as he is approaching kindergarten age and that some of the local schools have special preschool classrooms for kids with learning disabilities.

Intellectually, I know that my son is far from the worse case scenario. He's pretty bright, creative, engaging and for the most part interested the world around him. Emotionally, as a person who was diagnosed with SPD as an 11 year old child, I feel guilty that I passed on my crappy genes. The school system was an emotional meatgrinder for me and I still struggle with a sense of being broken and defective because of it. I want a better outcome for him.
posted by echolalia67 at 4:52 PM on April 14, 2010

I spend literally an hour reading all of the posts in the BND thread. Then I read this. And I am ashamed of my previous time spent.

Wishing you strength and courage.

And a hug.
posted by Splunge at 5:33 PM on April 14, 2010

We got an Asperger's DX from my precious almost 10 yr old daughter last week. It was out of the blue, she had some motor problems we discovered last fall but has always been way off the chart for language, reading, etc. Now, I see it, it fits although mildly, but it still fits. The way the Dev. Ped explained it was "you wouldn't go buy a manual for a Hundai when you own a very special, one of a kind automobile". That just made sense to me. We are reassessing everything at 10 years old, she has not changed, she is just as wonderful and special and precious as ever, we need to change. Remember that as you go down this path. I'm still floored and scared and panicked but we will take it step by step and I'm better knowing that I've bought the right manual.
posted by pearlybob at 5:40 PM on April 14, 2010

It's so tough to get that diagnosis, but it's also amazing how much Autism Spectrum Disorder kids can flourish once they're getting great therapeutic services. In fact, sometimes they excel and mainstream so completely that you have to remind the administration that your kid does still occasionally need services and accommodation.

You can hang out in the Crappy Genes Oh God Guilt corner with me. Sometimes, you will be up at night, maudlin and thinking about that, and wondering which decisions you could change. Which things you should have done better/different/earlier/later. And just know, you're not alone in that corner. Hang in there!
posted by headspace at 5:41 PM on April 14, 2010

echolalia67, that sounds about right. However, it might also be a good idea to hook up with your local Parent Training and Information Center; their job is basically to help you understand all your rights and responsibilities as they pertain to obtaining services through the school district (at my day job, I work for one).
posted by infinitywaltz at 6:05 PM on April 14, 2010

infinitywaltz, if you have the info for the San Francisco Regional Center please memail it to me when you get a moment.

Thank you all so much for your words of advice and support. This place really is "the best of the web".
posted by echolalia67 at 6:54 PM on April 14, 2010

I have twin boys with autism who are 9. I have also become an advocate for families accessing services. You never know where you're going to go. It's tough at the beginning, but it gets easier, and there's lots of really great intervention programs out there. Please feel free to Memail me.
posted by kch at 7:53 PM on April 14, 2010

If you find that the public schools are not able to give your son enough support, there are ways to get the state to pay for private school. I'm not entirely sure how, but I know my cousin is "funded" at her private school.

I definitely understand that this tentative diagnosis is overwhelming, but I think in time you will realize that a diagnosis is a tool rather than a burden. Once you can identify and label (at least somewhat) the situation, you can learn specific tools to help your son. He is going to learn differently than most mainstream children, and knowing his strengths, weaknesses and needs will be the best way to reach him.
posted by radioamy at 8:03 PM on April 14, 2010

I have a 7 year old son with autism who was diagnosed around the same age as your son. I completely relate, it was tough and disorienting.

Now, 4 years later, after much trials and errors, tears of joy and anguish, I know for a fact that no one will be able to predict exactly how your son will turn out. The only thing you can do now is fight. Fight for him. Learn all you can. Find out all the therapies that he may qualify for at the local schools. Many offer special services for pre-school students who need extra help before Kindergarten. Call your state's Department of Heath or in my case, the Department of Economic Security in the DDD division.

My wife stresses for you to go the TACA website and get their new parent DVD seminar or go to one of their new parent conferences because they go through everything you will need to do and how to deal with all the agencies and so on. They are based in California. They are biomedical based, but they do explain all other services you can have access to throughout the state. It costs $60 but my wife highly recommends it and wishes we had it when we started this journey blindly.

Good luck and feel free to email me.
posted by dealing away at 1:13 AM on April 15, 2010

I started the ASD diagnosis journey about a year ago with my kid, and I definitely remember the OMGWTF feeling.

Here are a few online things you might like:

Autism Speaks 100 Day Kit (Autism Speaks is a controversial organization and does much that I disagree with, but the 100 Day Kit can be useful)
Wrong Planet (autism community website, includes area for parent discussion)
Squidalicious (parent blog)
We Go With Him (parent blog)
A Life Less Ordinary? (parent blog)
MOM-Not Otherwise Specified (parent blog)
Identifying and Avoiding Autism Cults (awesome BlogHer post by the author of Squidalicious)

Best of luck and don't panic! MeMail me if you want to talk.
posted by Daily Alice at 4:57 AM on April 15, 2010 [1 favorite]

You're a good mom. Remember that. You did the hard thing and the right thing. Good luck to you and your son. Lots of kids with autism spectrum disorders grow up to be creative, imaginative, highly intelligent people. Never forget that.
posted by fourcheesemac at 4:57 AM on April 15, 2010

I don't know how I will help him successfully navigate the political complexities of the school yard.

This is what behavorial aides are for. It sounds like your son should be eligible for a behavorial aide at school. The aides are there for that very thing - helping him get along with classmates and helping with his behavior.

I posted in your earlier thread because my son was diagnosed at the age of two. He's six now and the changes he's gone through are a joy to behold. But it is a lot of hard work.

Here is the good news. You're well on your way to a diagnosis. And with a diagnosis in CA, you can get services. Free Services. The thing to do is contact the regional center as well as your local school district. Call early and call often.

My son started out with speech therapy, a behavioral aide in pre-school and OT (occupational therapy). He's now down to speech therapy at school and a "ghost" behavioral aide (He doesn't know the aide is there). ABA (Advanced Behavorial analysis) is the way to. It is a lot of hard work and it may get worse before it gets better. But it can work wonders.

If you have trouble getting services, there are advocates you can hire to help you navigate your particular district.

I remember being scared to death when I found out. But this is really one of those "It takes a village" type things. And I have no doubt you will meet a lot of great people in the ASD community. People who want nothing more than to help your son.

Now you just have to put your nose to the grindstone and dig in your heels. It's not easy. But nothing worthwhile ever is.

Please feel free to memail me if you have questions.
posted by cjets at 2:48 PM on April 15, 2010

Clearly you've got a dearth of fellow mefites ready to walk through this struggle with you and who can be great resources for pointing you in the best directions. And, you've still got the green to help you sort through the inevitable questions that are going to come up. And you've got my well wishes and prayers. Good on you - I've got a great respect for parents like yourself.
posted by allkindsoftime at 8:21 AM on April 16, 2010

Update: kidlet is now in a twice-a-week special ed class, focusing on speech and socialization. He's only had one class so far, but he LOVES it. I'm also gearing up for a battle with SFUSD to get additional services, as the assessment team thinks that the school district is not offering all the required services that they can provide.

Additionally, I'm in contact with the Regional Center and with an advocacy group that helps parents advocate for their children with all of the various agencies. Diagnostic testing is still on-going.

For any San Francisco MeFites out there who are considering getting their child tested - see if you can get your pediatrician to put in a referral to the UCSF/SFGH Multidisciplinary Assessment Clinic. They have been amazing.

Thank you all for the support and advice. It has been really helpful. You guys rock.
posted by echolalia67 at 10:13 AM on May 14, 2010

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