Speech question?

Ashlbee

Hi! My son will be 20 months next week. We just moved from Nevada to MI. He has been getting services from eRly intervention from about 4 months due to the fact that he has a partial duplication of chromosome 16. He babbles and makes noises, and clearly understands a LOT of words, but he doesn't talk. He is just starting to try to repeat things we say-but he does not say anything at all on his own. His developmental specialist and pediatrician in NV both suggested getting a speech evaluation-but since we were moving we figured we would do it in MI. We'll-he had his evaluation for early intervention here in MI yesterday, and while he qualifies for a developmental specialist, they want to wait 6 months for any speech evaluation! He only had a 35% speech delay. BUT the little evaluation they did lumps together actual speech with his understanding of words. My family, including my husband, think I am just worrying too much about his speech-but with his specific duplication speech can be a major problem! And I feel that zero words at 20 months seems weird considering everything I read says they should have 10-50 words at this point! So I guess the point of this is: what do you guys think about this? Does no words at this point sound like an issue? Should I push for a speech evaluation with EI(although they made it clear that it would take months right now to get one anyway...) or maybe try to get an evaluation else where? Or a, I just being paranoid? Any thoughts would be great...I'm feeling pretty alone with this right now.

EmAre

My daughter has a microdeletion of chromosome 16 (16p11.2). My best advice is to get on the list now with EI. They may have some cancellations and can see him sooner. Or you can cancel later if you no longer are concerned. If he doesn't qualify now, keep pushing for evals every 6 mos. My daughter didn't qualify when she first was evaluated at 12 mos, but did as she got older. Also, having a good dev ped or developmental center on your side can only help.

If you are on FB, there are a few chromosome 16 groups you can join and there may even be groups for your son's specific duplication.

Always follow your gut!

Ashlbee

EmAre- my sons duplication is 16p11.2!

Ashlbee

They just said that he's not too far behind, and that he will most likely "have a speech explosion" soon and start talking. That they normally don't see kids younger then 2-21/2 unless they have a huge delay in speech.They also said that since speech Evals are through the schools and school gets out soon that they won't see him now anyway? Honestly I am disappointed so far with the program here compared to how it was in Nevada. We don't have a pedi here yet-but am planning to find one today. I'm not sure where to go next with early intervention-even when I brought up concerns they just kept saying to wait, and that we wouldn't get in anytime soon anyways. Would I go through the pedi to get a private evaluation? Thanks so much!

Ashlbee

Thank you auntie! I didn't think these things really sounded right either-but my son was getting close to a near nap time melt down, and the ladies seemed a little pushy(and I'm a timid person) so I sorta let it go at the moment. I really expected that the transfer from Nevada would go much smoother! They even seemed hesitant about him needing to see a developmental specialist saying "with the duplication he qualifies so technically he can see someone once a month if you really think he needs to...". I jumped on that and said yes-he needs too!

OrangeBird

My daughter is 22 months and not speaking (no words at all) but does not have a diagnosis.  We were referred to state EI at 18 months, and like your son, she technically did not qualify because her comprehension is good.  However, I pushed and they agreed to go ahead and take her on anyway.  She has been getting therapy 2x a month since 18 months.  However, we really have not seen any progress.  The impression I am getting is that it's really hard to "treat" speech problems at this age because 1) it's difficult to identify the source(s) of the problem and 2) at this age kids aren't too tolerant of the level of physical intervention required.  We've mainly been working on building her muscles in the mouth area (drinking thick liquids through straws, blowing bubbles, making funny faces).  We've started focusing on sign language, and she's picking that up fairly well.  That at least is helping reduce her communication frustration.  I have heard the same thing you have about a "speech explosion" (from multiple sources), but at this point I really don't see that happening.  I feel strongly that there is some physiological obstacle that is keeping her from speaking, and until we figure out what that is, nothing is going to change.

EmAre

Ashlbee said:

EmAre- my sons duplication is 16p11.2!

I had a feeling! I would absolutely push and stay on them for evals. Expressive language delay is very common in our kiddos. While he may have some type of "language explosion", the fact that he is struggling now may be a sign that speech and language will always be an area of difficulty for him.

There is a research group out of Harvard (SimonsVIP) specifically researching deletions & duplications on 16p11.2. They preach early and intensive therapy is imperative for our kiddos. I know it's hard to stand up to professionals and argue against their suggestions, but you are your son's only advocate.

PM me if you want to chat further. And I really suggest the 16p Facebook groups!

Assembly_Reqd

Our son also has genetic issues on chromosome 1 and speech delay goes with it as well. Even though we started speech at 22 months, there was very, very little progress the first year. He was just not ready I guess. He has gross and fine motor delays as well as has always been "working on something else" while learning speech.

We really did not see a lot of progress until we asked EI for a second half hour a week and also added another 1/2 hour private per week. He's now 4.5 and still unintelligible to everyone except DH and I and his therapists.

Trust your mommy gut, but It may be O.K. to wait. With a 35% delay you may only qualify for 1 or 2 30min sessions per month. Kinda pointless IMHO if you aren't going to do OOP speech too.

algalphys

Get the evaluation...I got two separate ones done when my DS1 was 2 and they both said he was fine no worries but it still bothered me. No progress at all in 6 months and suddenly a new slp diagnosed him with apraxia, which I suspected all along because his comprehension was great like your kiddo.

Push push push, like others have said trust your mommy gut