Severe Developmental Expressive Language Disorder

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MidlifeAspie
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02 Mar 2011, 5:15 pm

I want to kick of a series of threads for advice from AS parents about parenting with AS. This forum idea is one that many people have been asking for and as it does not currently exist I want to try and use this Parenting forum for dual purpose.

My 26 month old son was diagnosed yesterday as having the verbal receptive ability of a 29 month old and the verbal expressive ability of a 9 month old, hence the diagnosis in the subject line. I am an Aspie and my wife is an NT. My language development was very early in that I was using complete sentences by 18 months old and reading when I was 4. My wife's language development was completely average. Obviously we all know that language delay is not a good predictor of an ASD and that is not the reason for my post. If he turns out to be Aspie that is just as well and his Aspie dad will understand him.

What I want to know is how other AS parents have dealt with an issue like this. The anxiety I feel during the speech therapy appointments is distracting me from focusing as I would like. I am trying to break everything down and analyze the process and this is not helping. It seems that the process for diagnosing and treating something like this is a soft social skill, and I am completely out of my depth. I am perseverating and stressing out.

I fear this is sending me into a depression.


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02 Mar 2011, 6:37 pm

I had never heard of this disorder but I will say that my son was not talking except for the odd word or 2-3 word phrase until he was 4. It was always clear though that his receptive language skills were just fine. When he was diagnosed with Asperger's at age 5, I asked why Asperger's ( because I had read about the no significant language delay) and was told that because he was able to communicate (albeit without words) that they counted that as language development.

Actually I'm sorry I didn't attend to your question. Why are you feeling anxious about the speech therapy sessions?



Stubbydog
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02 Mar 2011, 7:24 pm

My son (probably mostly NT with a few AS characteristics) has been in speech therapy since he was 18 months old. He was delayed both in receptive and expressive language...at his 18 month evaluation, he was considered to have the language skills of a 9 month old. He's now 3.5 and while he's still working on intelligibility, he TALKS. Really talks, a lot. Too much! :lol: His therapist now puts him at age-appropriate levels and feels like the lingering intelligibility stuff will work itself out as he practices more and more. At 18 months he had just a few words, maybe 3. At 24 months he had added probably a couple more, and at 30 months he had less than 20 words. However...shortly after his 30 month doctor visit, he started gaining language much more quickly.

My husband, completely NT, also had issues dealing with speech sessions. I think many men feel a big need to "fix" things, and with something like therapy there is no "fixing". Trying harder is just that...trying harder. It may help, it may not. Eventually he stopped attending the sessions and I went solely and would let him know what the therapist said to work on that week.



angelbear
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02 Mar 2011, 10:56 pm

Try not to let this send you into depression. My son had mostly echolalia and his receptive language was much lower than his expressive language at 2 and 3 years old. He talked alot, but his teachers and therapists all agreed that he did not comprehend most of what was being said to him. He is now 5.5 and has been in speech therapy for about 3.5 years. His speech is coming along beautifully. He is now speaking in complete sentences, asking questions and can have a small back and forth conversation. He still gets stuck on words and phrases, and he loves to make crazy noises, but his speech is really progressing. Just let the therapists do their job, and just keep talking to your son and showing him things and label the names of things for him and I think he will progress just fine. I have just read so many posts on this forum of children who did not speak until 4 and 5 yrs old, and are now speaking just fine. Try not to stress!!



innermusic
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03 Mar 2011, 12:10 am

Hello - my now 8 year old was late to talk (expressive) but the receptive was high when he was a toddler, too. When given a test where the doctors told him to point to a card that they said - he tested way better than kids his age. But when asked to say the word of what he saw, that scored lower. My son did learn to talk, and when he did, it was in phrases. He did not say "ma ma" or "bye bye" any of that as first words. We could not even get him to say "wheee" when going down a slide. He just laughed. You could tell he knew what was going on - and was quite smart, but he wouldn't talk. In fact, he ended up with most of the symptoms of hyperlexia around age 2-3.

So - - this is how it unfolded for us. One of his first words was "octogon" (not mama). He must have stockpiled the meaning of a lot of words he understood, and when he "decided" to start talking (that's how it appeared anyway), he spoke full words. BUT he had a hard time putting together what he wanted to say. That's the expressive delay in action. If I asked "what do you want to drink" - he wouldn't answer. He couldn't think of the word. Then, I would ask him, do you want juice or milk? He could answer. Or in the very beginning, I said do you want juice, yes or no? I had to work hard to pull language out of him. He also taught himself to read at 3- not sure how, but that was amazing to watch. But he wouldn't talk unless he had to.

One of the first things we did to start him on making sounds was to say "pop" when he popped a bubble out of the air. Later, I would put my forehead against his, and say "maaaaaa". He liked that, because he could feel the word, and it was a game for us. We I would say "mmmmmmmm" for a long time, and then all of a sudden, the ending "maaaaa", and we would try to time it so we did it together. It made him giggle, and enjoy making sounds.

Anyway - he is now 8, and it was long ago that he was two, so I'm trying to remember how it was back then, but he is VERY smart, understood so much of what we said, but just had a pickle of a time trying to say what he wanted to say. Now, he does pretty well. He is in school fully included in the class. He is social, and tells us about his day, but clearly the expressive issue is still there, but it has improved very much. Here's an example of something hard for him: "How was your day at the zoo?" (he has to remember, and decide what to talk about...) That's VERY hard to answer, and he tries to get out of it. He just needs a bit more time to gather his thoughts, but he can do it. But, if you ask him how far the earth is from the sun, he has the answer right away(a fact).

My husband was a late talker - they almost took him to get checked, but at around 2.5 yrs, he started talking and has never stopped since! You NEVER KNOW when they are that little - but it's still good to catch it now, just in case.

The AMAZING books "More than Words" and "Talkability" by the Hanen center out of Toronto helped me help him with his expressive language. Very outstanding and I always recommend those to anyone I hear who has a late talker. The best part - it's more do-it-yourself stuff to try.

Also - I HATED dealing with the experts. I always wanted to talk about the facts and figure out things from a brain science angle - but hearing them drivel on about "oh, so how do you feel about that" was downright annoying, and they looked at me with a suspicious eye whenever I tried to talk about what I had researched and did not want to talk about my feelings. Like "hmmm, so THIS is where it comes from." And this is coming from a mom, I'm sure a guy would be even more irritated by the speech sessions.



angelbear
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03 Mar 2011, 1:43 pm

You bring up some great points Innermusic. I do remember being annoyed with the first speech therapist we worked with. As a matter of fact, I remember thinking to myself that my son did not even need speech therapy because he had a lot of words. He was pronouncing words like "diagnosis" at age 2. However, over time, I realized that he was not using his language to communicate or to interact very much. I remember being pretty sad over the fact that he would not call out the word "mama" when he was upset or crying even though he could say the word. It was like it didn't occur to him to call for me. I also had a really hard time getting him to understand to respond with the word "yes" I finally started sitting with him and gave him ice cream and while he was eating it, I would say "Do you like ice cream?" And then I would nod my head in a very exaggerated way and say "YES" you like ice cream.

I guess my point is this----speech therapy is only for an hour or so at most a week. We are the parents, and we are the ones who really do the work. So Midlife, just trust your instincts and work with your son in ways you know he will respond. The therapists are really just there for guidance and ideas. So try not to analyze what they do too much. I think you will be ok.



innermusic
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03 Mar 2011, 8:05 pm

Yes angelbear, I know what you mean about they wouldn't say "mama" when upset. Breaks the heart. That's what makes this difficult for others who haven't lived those early years to really understand. It's not as simple as they are not yet saying words, or they are a late talker, who is simply late to start, but otherwise proceeds fairly typically. I like how you told about how you taught him to say 'yes'. You show them what they should say to answer your question. I sure felt like I was talking to myself during that phase! "Should we go outside? Outside? Yes, outside is fun mom, lets go" (all of that said by me). I felt like a voice over narrator half the time.



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03 Mar 2011, 9:16 pm

MidLifeAspie, do you need to be there when your son has speech? With my son, we figured out early on that I just couldn't be there when he was working with someone else. Now, the reasons in my situation are different than yours, but it came down to a simple answer: don't go. Either observe/listen from an isolated room and take notes, or ask for 5 minutes at the beginning and end to get a summary (I actually did neither; I just trusted and asked them to tell me if there was something specific they wanted me to do at home). There are always creative options, if you are willing to look for them.

The process is very much a soft social skill, I agree, btw. Which is why maybe you lets the experts be the experts. Just be super careful picking those experts so you are comfortable with that.


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MidlifeAspie
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03 Mar 2011, 9:34 pm

DW_a_mom wrote:
MidLifeAspie, do you need to be there when your son has speech?


I may just have my wife do it but I feel terrible. I want to be as involved as I can and the therapy seems to consist of things that need to be practiced at home all the time. As I have mentioned before, I am something of an overboard parent/father. I handled every middle of the night feeding he ever had and my wife didn't change her first diaper until he was a month old. I have never missed a doctors appointment and not being involved in something this important makes me feel like a failure as a father.

As far as picking the right therapist, we are working on our third opinion right now because I haven't been happy with the last two therapists. Maybe things will be different with the next one, but I could barely hold back the tears last time.


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DW_a_mom
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03 Mar 2011, 10:18 pm

MidlifeAspie wrote:
DW_a_mom wrote:
MidLifeAspie, do you need to be there when your son has speech?


I may just have my wife do it but I feel terrible. I want to be as involved as I can and the therapy seems to consist of things that need to be practiced at home all the time. As I have mentioned before, I am something of an overboard parent/father. I handled every middle of the night feeding he ever had and my wife didn't change her first diaper until he was a month old. I have never missed a doctors appointment and not being involved in something this important makes me feel like a failure as a father.

As far as picking the right therapist, we are working on our third opinion right now because I haven't been happy with the last two therapists. Maybe things will be different with the next one, but I could barely hold back the tears last time.


Remember this: part of being a good parent is accepting that sometimes the best thing to do is pass the ball. No parent is superman, capable of handling absolutely every aspect of their child's upbringing perfectly. If we were, we could skip having schools, doctors, or any of the rest of it. There is no failure in putting together the best team to address an issue, even when that team does not include you. It's what we all do all the time. You've set the bar so high for yourself that you can never meet it, and that isn't healthy for you or your family. Lower the bar, split up the duties, and give your son more of the best of yourself, instead of more of all of yourself.

I don't know if that is an AS thing, or influenced by the AS, the need to be superman dad. I think it comes in all nuero forms, but it might affect differently because of the AS. Another topic, really, eh? Just know you aren't the first person to have to make the mental adjustment of understanding the value of letting go.


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angelbear
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04 Mar 2011, 6:12 pm

I totally agree DW. I was so distressed about sending my son to special needs pre-k at 3 years old. Here I was driving my baby up to the school when he was still in pull ups and dropping him off to the teacher while all the big kids were getting off the school bus. But, it was the BEST thing I ever could have done for my son. I credit a big part of the improvements to the work that special needs pre-k teacher did with my son. Of course it really helped that we live in a school district that is on board with autism and are pretty pro-active. So, Midlife, it is true, sometimes it is best to let others work with our kids. Sometimes our kids will "do" things for others that they won't do for us.

I think it is great that you are such a hands on Dad. That is terrific.

Oh, and Innermusic, my son is now calling for Mom all of the time!



MidlifeAspie
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04 Mar 2011, 6:20 pm

Thanks everyone. I am trying to take this to heart.


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04 Mar 2011, 8:13 pm

I agree with DW-a-mom, although there is no way you will be able to relax , not knowing what happens in the room... You could try learning more about the therapy by yourself, knowing how it works and what it exactly entails might help you relax around professionals. Perseverating on this a little will surely be short lived, as there is only so much you need to learn about it...It's not an endless field of research :P
I would suggest letting yourself be dragged into it, and you will probably learn some good skills that might help your child.
Another suggestion maybe: do not let depression grow. Treat it like an ennemy, the sooner you tackle it, the less damage it will do.



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05 Mar 2011, 12:25 am

My language skill problems were not really addressed untill I was in the 2nd grade. They did an IQ test on me and I scored 56, and then when they gave me a non verbal IQ test, I scored 135.....79 pt difference between the two! That was an eye opener, I was then taught english as a second language, even though I was raised in an english speaking household and it seemed to have worked. I no longer use "being" as my all purpose verb.

My parrents went crazy trying to find out what was going on with me and what to do about it, however most the answers did not come untill I was in my teens and late 20's. It is good you have a diagnosis and a plan now, he is lucky to have you,

Jojo


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05 Mar 2011, 9:04 am

jojobean wrote:
That was an eye opener, I was then taught english as a second language, even though I was raised in an english speaking household and it seemed to have worked. I no longer use "being" as my all purpose verb.


Jojo, this is so interesting - while DS never had difficulty in expressive language, we enrolled him in our local version of ESL - a two-way immersion program (TWI.) I had no idea of his current diagnosis at the time, but knew somehow it was the right thing to do. To this day, he doesn't speak Spanish (unlike all the other English-speaking kids in his class,) but he has reaped great benefit from all the exaggerated non-verbal language that naturally goes along with a program like this. ESL sounds like an excellent option as well.