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What's Max Doing Now that He's 4

Posted Apr 08 2013 3:04pm
So a week or so before Max's recent 4th birthday, Steve & I asked ourselves how much Max had progressed cognitively since his 3rd birthday. I was a bit sad that our answer ended up being, "Not much." And he's actually regressed a little in speech - if that's possible for a kid who doesn't speak - ha.
So anyway, I went back through the old birthday blog posts, and looked to see where he was at when he turned 2, then 3, and now at 4.

It wasn't pretty. And although I still don't know whether he is just 'extra' delayed, or if the autism is showing through, it really got me in a funk for a few days. I know I shouldn't compare him to other kids his age with Ds, but I can't help wonder if this kid is ever going to speak. I know, I know, he'll do things on his own time schedule. But I can't help but think that if the last 3 years of speech therapy hasn't produced one single word, will 3 more years? Ugh. Fortunately, Max is so stinkin' adorable that he wins us over every day making us laugh and smile without saying anything. It's not so adorable when he's whining and kicking and we have no idea what he's disliking at that moment. So yeah, speaking anytime now would be great little dude! ;)

So, anywhooo, here are some Ds milestone charts for a general sense of where Max is and how far he's come in the last couple of years (color coded by age)

From a blog post when he was 2 1/2:
Max is most delayed in the communication arena. I believe he is at about a 15 month old level of communication. Cognitively, I don't see that he understands instructions. He only makes b, d, and p consonant sounds.
There are moments when I talk to him or see him looking at something, and can see that he just doesn't understand.
He signs 'milk', 'doggy', 'all done', 'more', 'apple', 'hi', 'bye', and 'eat'.
He just learned how to blow kisses
His first and only word is 'Dada', although I think he says 'uppuh' meaning 'Piper'.

From a blog post a year later when he was 3:
Max has really come a long way this year. He still only says "Daddy", but he has expanded his signs to more than 20. I'll list them in a follow up post. He still needs a lot of prompts when signing and only does one or two spontaneously, but that is huge progress.
Last year on his birthday, he had just learned to walk. He is now running all over the place and jumping, too. He is getting better and better with stairs, too.
He seems to be developing more sensory issues. He has gotten all out of sorts the last couple of times we've taken him to a noisy restaurant. He can no longer handle the carousel at the zoo - completely freaks out from the noise. He continues to despise haircuts. And today was a disaster at lagoon.
Dr. Durham did mention for the first time, that he thought Max could use some additional speech therapy.
 Max’s Signs {as of March 31st, 2012, age 3}
 *Signs on his own +Signs with verbal or visual prompt #Signs along with Signing Time DVD but may not know what it means
*All done  *More  *Milk/Drink (uses same milk sign for both)*Please  *Dog  *Car  *Baby  *Apple  *Shoes (similar sign to more) *Hi  *Bye+Go  +Socks  +French fry (we made up this sign)  +Ball  +Eat  +Cold +Stop  +Thank you  +Hat  +Bath#Cheese  #Dad  #Mama  #Flower***Words: Daddy/Dada – says clearly Piper – says with own word approximation, sometimes sounds like “uppuh” or “poppa” Up – says clearly but don’t think he knows what it means (as of May, he doesn't really say this anymore) Pop – says pretty clearly (as of May, he doesn't really say this anymore) Ball – says “b” sound (as of May, he doesn't really say this anymore) Num – says clearly when referring to food or drink Bubble – says with own word approximation (as of May, he doesn't really say this anymore) *** And a post at 3 1/2:
He is on target with the averages in gross motor, maybe even a little ahead. He is a great jumper, can run well, and can go up and down stairs with ease most of the time.
In the personal social/ self help category, he is getting better with a fork and spoon (huge progress from a yr ago), but we haven't even begun to think about potty training. And he really doesn't ever try to dress or undress himself.
Communication is still where he's lacking. He still only says one word, Daddy, and quite honestly, I haven't heard that in a while I was noticing yesterday. He is back to saying dada or even just da. Ugh.
He doesn't yet gesture or jabber expressively. I'd say he's still around a 12-18 month level in this area. Unfortunately I saw a bit of regression in his speech over the summer, which is hard to believe, since his communication was hardly there to regress! BUT, he is progressing overall, and is signing more and more (although still not spontaneously  but does mimic more), so there is reason to celebrate :)

And now at his 4th birthday:Holy regression batman. Although physically, Max is progressing, cognitively, he's not so much. He no longer says any words or approximations other than "da" for Daddy. He makes random sounds like 'guh' and 'be', not even word approximations anymore. I have heard him babble twice in his entire 4 years (and both in the last 2 months, so that's something). But as for signing, I am now realizing that he doesn't really know what the signs mean, he just knows that moving his hand in a certain way is what the word means. He has made improvements in being able to mimic signs. He can follow along with Signing Time dvd's and sign most everything along with the show. In speech therapy last week, Laura held up two items and asked him to get the cow. He signed cow and grabbed the pig ;( He signs all day long with the Signing Time DVDs, but doesn't communicate using signs. If we are eating and you ask him if he wants more, he will sign more. But if you then ask, 'or are you all done?', he'll sign all done. He's just repeating the word he heard! I'm seeing that trend across the board with signs I once thought he knew. Now I'm not so sure. But just like talking, kids will repeat a word whether they know the meaning or not, so it does show progress. And he does know some signs. He labels things, like milk. But he has never once signed eat, milk, sleep, hurt, etc, to tell me he's hungry, thirsty, or hurt. He doesn't nod yes or no. When I ask him if he wants to eat, he will sign 'eat' 100% of the time - it doesn't really tell me at all if he's hungry. Once, he signed coat because he wanted to go outside. I almost cried out of happiness. He will sign bath when he hears the water running in the bathroom. So yeah, he does know some signs. But how many? Under 20, I am sure. I'm hoping sometime soon he will make more connections with signing to communicate. The signs are in his little brain! 
They use PECS (a picture symbol card) a bit at preschool, and I've tried at home a little, but it's just, well, awkward. I know he needs lunch, so I give it to him. I don't make him show me a card of what he wants to eat. I guess I need to do that more. But I just want him to TALK!!! and get potty trained... (major failed attempt at that last week- maybe I'll post about it later - not much to post - he just.didn'

So anyway, love this kiddo to pieces! Wish he would figure out the whole communicating thing. I know, he's only 4. But I don't know a single kid his age who doesn't say at least a few words, and most of them are putting words together. Even a friend whose kiddo is a few months older than Max and has severe apraxia, will pull his mom to show her what he wants. Even that would be helpful. And the lack thereof, to me, is autism. Which I hate. I can handle the sensory issues, the OCD, the stimming... but the lack of communicating is getting old ;(

And we would be getting help via ABA therapy, but I have yet to get the right paperwork from the right people to start the waiver program (yeah - it's been 5 months of run around!). 

OK, my venting is over. My biggest fear is that Max won't ever speak, or sign, or communicate. But aside from that, Max is really a great little kid. He has the BEST sense of humor. He is always laughing, making us laugh, giving us hugs, being his cute little quirky self. He and Piper are the best of buddies. And, most importantly, he is HAPPY. And that's what really matters, right?!

Love you Max!!!!

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