"Once our eyes are opened, we can't pretend we don't know what to do.
God, who weighs our hearts and keeps our souls, knows what we know,
and holds us responsible to act." Prov 24:12

Tuesday, January 24, 2012

Language Development Issues

So, I am not sure where to even start so here goes... Sasha is very behind in his language development. He is now a little over 3 years old and I would say that he has the language skills of someone closer to having just turned 2, if even that. I was fully aware that he might be a little behind after coming home from the orphanage. We were told that typically, for every 3 months they spend in an institution, you can predict that they will be 1 month behind developmentally. Well that puts him at about 6 months behind but he is way more behind than that. I guess I was fairly naive about where his language would be and where he would be after being home for over a year and half. To me, something seems not right but then again, I can't say that I have much knowledge in this area. Yes, I am a special ed teacher but I have never worked with kids that have come from institutions.

Every one that works with Sasha says that everything is fine and he is progressing as he should. We have been told repeatedly that it takes time. His doctor, his two speech pathologists, his special ed teachers, his geneticist, his neurosurgeon... nobody seems the least bit concerned expect his dad and I. Now this is probably where most people would say well then just stop worrying. But the thing is, these people aren't with Sasha everyday. Some, such as his geneticist and his neurosurgeon, haven't seen him since he came home. We are with Sasha everyday and to us, it just seems like he should be able to communicate better by this point. Sometimes as well, I feel that people don't expect as much from Sasha. They see his physical limitations and automatically assume that he has cognitive difficulties as well. As far as we can tell from all the tests that he has had, there are no cognitive issues that should be causing any of his language difficulties... supposedly it is all from being institutionalized for the first 18 months of his life.

If this is true, how long does it take for these kids coming out of these institutions to typically catch up? Does it usually take months, 1 year, 3 years, 5 years... will it ever happen because to be completely honest, sometimes I wonder if he will ever catch up. I understand no one can tell me exactly how long it will take Sasha. It would be so helpful to hear though from people who have been in this position or who have worked with kids like Sasha. I guess I just need some answers or some clarification as to what the norm is here. Is it normal for him to be this far behind? Does is truly take years and years to catch up?

Everything seems to check out fine with him. His hearing is outstanding... in fact, he is a master at imitating sounds. If he hears a paper rip from across the room, or tapping on a table... basically any sound, he can imitate it perfectly and loves to do it. I guess this comes from sitting in his crib all the time listening to all the sounds in orphanage and finding ways to entertain himself. It's really quite impressive what he can do. His oral structure appears fine... there doesn't seem to be any physical reason why he is struggling. Pretty much everything checks out. I do worry about something his neurosurgeon said after he first came home. Sasha has craniosynostosis so he had to have a scan when he first came home to make sure that his brain was not being pushed on in certain parts because of his abnormal bone structure. His neurosurgeon said everything looked great and that he did not need surgery. He did say that we should keep our eye on things in the future, just to be safe and if we ever heard him complain about headaches a lot or if he was struggling in school, that we should have him checked out again to make sure everything still checked out okay. Well, now I am wondering if his language development difficulties have to do with this rather than the fact that he had been in an orphanage. My husband isn't concerned about this and thinks that his brain is just fine. I guess if I knew that what he is dealing with in terms of his language, truly is typical, then I wouldn't worry about this.

In terms of the help he gets... I work with Sasha at home a lot and have been since he got home. He also goes to preschool fives times a week now which he started in November. Since starting preschool he has definitely improved which is reassuring but is still so far behind in my opinion.

Here are a few examples of where he is at...
1. He can say thank you, please, your welcome, hi, bye, night night, I love you, more, again, get down, potty, Elmo, Fire(for his Kindle Fire), chocolate, cottage cheese, banana, muffin, milk (more like gilk), water(more like "why you"), mama, daddy, what, car, button, kiss, cuddle, Cars 2... I could go on and on but basically he says one word things from his daily world.
2. He can sing the ABC's and when presented with flashcards, only typically misses about 7 letters out of the whole alphabet.
3. He can count to 10, usually.
4. He can say and identify some colors and shapes.
5. He does not put words into sentences. He simply speaks in one or two word phrases.
6. He cannot hold a conversation.
7. He can understand when you ask him a question but can't always answer it.
7. Yesterday I heard someone singing the lyrics to the song on the radio perfectly. I thought it was Brooks. I looked back and it was Sasha! That was a nice surprise.

That's basically where he is at. Like I said, he is a little over 3 and he has been home from the orphanage for about 20 months now after spending his first 18 months there. So, is this typical? Is this where he should be? Should I be concerned? What should my realistic expectations be? Any and all help, suggestions, prayers for Sasha's growth in this area... any thing at all would be so helpful at this point because I am feeling a bit lost here. Thank you!!!

9 comments:

  1. Wow..hmm...looking at the examples you gave on what he can say is very "18 months" to me. So lets look at how long he's been home 19 months? In that time, how many months of language has he gained? I think he's gained pretty close to 18-months worth of language!
    Is there an international adoption clinic there? If not, there is one here, perhaps if you come to Shriner's again you could get an appointment with their SLP who specializes in post-institutionalized children? To me, based on what you said, he seems to be doing GREAT, but I don't get to see him, and your gut is telling you there is a piece to the puzzle you still need to find.

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    1. I really think he's doing great! I have 10 from institutions. Some, may never catch up. However, Sasha does not seem that far behind based on just how much he's gained in that time. His progress will indeed look much different than a typical child. However, you may be experiencing some processing issues w/ language. If you have a gut feeling, always best to act on it. Sounds like he's come quite far though for sure. Bojan was behind developmentally when we got him from Serbia, just as my other kids. In some areas, it took him YEARS to catch up. Fast forward. He just turned 13yo, in a regular classroom, gets all A's & B's and plays trumpet. Doing fantastic minus the teen attitude. Years ago though, I couldn't have predicted it. Stephanie

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  2. Hopefully I didn't miss it somewhere along the line but is his hearing alright? I worked with a very young child who had hearing trouble. She wasn't deaf but could only hear certain sounds. She never had a hearing test because she responded to vocal commands and questions even though her answers were one and two word phrases. She caught up in a matter of months when she got hearing aids.

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  3. Hi! I have LOVE following your sweet family's blog! I hesistated to comment on this post knowing so little about Sasha and based on his past, but I think if the tables were turned I'd like someone to throw it out there for me. I work in Early Intervention with the birth-3 year olds and some of the ways you described Sasha made me think apraxia of speech. That diagnosis takes specific tests and is not easy to determine, so take this with a grain of salt(honestly!), but maybe ask his speech therapist(s). If it is, it would probably be mild considering the number of words he has. I went back and watched some of his videos of him speaking and it does sound like he has some articulation difficulties which may be consistent with apraxia. With apraxia, there is nothing wrong with the child's brain and nothing wrong with their mouth muscularly or physically...but it's like there is "static" in between the brain and mouth and the child has difficulty getting out their words. It does not impact his intelligence and there is a significant difference in their expressive and receptive language abilities. Their receptive language is typically age-appropriate, but delayed expressive. It is usually easier for them to sing, imitate, or use words as they are playing by themselves. Or you may hear words when they become angry or excited...when they are reacting rather than having to think about what they are saying.
    Be careful researching online too much about apraxia, most websites describe severe forms of apraxia and you do not need to be very worried about Sasha. The fact that he has so many single words and some 2 word phrases is excellent. Add to that his institutionalization and history and he's doing fantastic. Plus, he's already receiving services and you are working with him. If it is apraxia, speech therapy should look a little different than traditional ST. Again, I want to emphasize that I am just throwing this out there as something to look into. I cannot suggest he has apraxia just by reading your blog! He may very well be developing at his pace considering his history. But the red flags for apraxia I saw were: no cognitive concerns, master at imitating sounds, normal oral structure, craniosynostosis- I've worked with 2 kids with (fused sagittal suture) who developed apraxia (but with the rate he is making progress I wouldn't be too concerned about this for Sasha), using only 1-2 word phrases, can't hold conversation, understands questions but can't always answer, singing perfectly with the radio. Alone, those wouldn't mean much, but putting them together makes me at least question it. The main thing is you see him making progress! Regardless of what is or isn't going on, seeing progress is crucial! Anyway, as I mentioned, don't research online too much. This link gives good basic information:
    http://people.umass.edu/velleman/cas.html
    Other websites primarily give information on severe cases. Youtube may be a good place to watch videos others have put on of their children. Know that apraxia can look a little different sometimes though and there are different severities of it. Even if Sasha did have a mild form of apraxia, based on his progress and his videos, he has perfect potential to speak normally with continued therapy now.
    And one more time...I may be way off on this! He may very well just need more time to develop his language. If you are seeing steady progress, that is the most important thing. But I think it is great that you are following your mommy gut instinct (and daddy's too). Professionals miss it sometimes...for the reasons you mentioned, because it is a mild problem, or because he is making good progress. All things considered it sounds like he is doing really well. I LOVE reading updates on your family!

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  4. Oh...I understand how frustrating that can be. My guy is home 2 years and I'm still hearing everything is fine but he CAN'T recite the alphabet (at age 6 after 1/2 a year in Kindergarten). Everybody says it's language..he's still learning English they say..but it's 2 years! Sequences and songs and nursery rhymes are a nightmare as he can't seem to get things in order BUT he tested highly gifted (yes gifted above 130...way above). Now they only see that score and not struggles. I'm thinking expressive language disorder or dyslexia for my guy. See if they will test (vs the standard 3 year old). I.e., I finally got my son OT after first learning they made judgements like 'n/a' for can't tie shoe...I said I didn't want any n/a if a 6 year old should do it than yes / no for can my son do it...not n/a because he has only one finger and you think he'll never do it.

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  5. I brought home a 2 year old a little over 2 years ago. He has not yet caught up on his speech development. And he is not even caught up with Sasha cognitively. Yes, I worry. So glad that Sasha is doing so well cognitively. Have you had a speech and language eval?

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  6. devon, i can't tell you how uncanny it is to read what you write about sasha vis a vis language development considering it precisely parallels what we're experiencing with simon. to refresh, we brought simon home 12 months ago. he was 2;10 at the time. he had been institutionalized his entire time in china. we'd been told by his orphanage that he had some language difficulties, supposedly only putting 2 words together by age 2;6 or so. in fact, he didn't speak any chinese (other than screaming MAMA-BABA (mother-father) incessantly in the days after "gotcha") the entire 2 weeks we were in china with him. we had 3 native speakers (presumably of different dialects) speak to him when he first got home, and he didn't speak back to any of them. the kid had no language when we adopted him. however, within a day he was signing back to us. (we're a signing family, so it was a given we'd use ASL with him.) anyhow, fast forward a year, and i'm really concerned (and frustrated) with his language development (or lack thereof). like sasha, simon is in a district ECE five mornings a week. he is also in private preschool with our older son, 8 months simon's senior (and a talker since birth), five afternoons a week. he gets speech in ECE (in addition to PT and OT), and when i asked his speech therapist if she thought there was some difficulty other than his having been institutionalized, she basically shrugged it off like what does it matter? so i took him for an independent speech eval and was basically told that though he's substantially language and speech delayed, he's at least progressing in the usual sequence. but that didn't speak to rate to me. true, he has only been home 12 months and, particularly if he didn't have any kind of real language base to begin with, maybe it's unfair of me to expect him to speak like his 4-year-old brother. on the other hand, the fact that he didn't seem to have expressive chinese, having spent nearly the first 3 years of his life in china, troubles me, too. can it only be the effect of institutionalization? right now, he is so far from having "normal" speech that i do, like you, wonder if it will ever come and, if so, in what kind of time (1 year, 3 years, etc.). i wish i had more posts like yours to read, especially from adoptive parents on the other end of this. thanks for posting!

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  7. Hey! I like your blog! Honestly, all four of my kids developed differently. From what you said about Sasha (Bowen?), he is where Toby was at when he was about 22-24 months. Toby has a very laid back personality. I think, though, that he could end up being the smartest out of the four. My fix-it personality says to not worry so much and just help him to develop as best as he can, but you already know that stuff. I understand and applaud your concern. That is what makes you such a great mom!

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  8. Devon.... the best advice I can give is to trust your gut. Yours seems to be telling you that something's not right.
    If you suspect it's his brain... then get a second opinion. It can't hurt and can only help.
    I would get a second opinion from a different speech pathologist as well. Sometimes they miss things. They're only human. Even if you don't get a second opinion... bring up the possibility of apraxia of speech. Tell her/him that a sp/st who watched videos of him noticed red flags. Tell her what they are. Heck... just print out the above comment and let her/him read it!
    But please... trust your instincts. If they tell you something's wrong, it probably is. I know because I trusted my pediatrician and delayed getting my son help for 18 months even though I felt something wasn't right. In fact... things were very wrong. My baby was suffering from a massive h. pylori infection, gastric ulcers caused by the infection, lead poisoning compounded by the intestinal damage (his body absorbed a very toxic amount) and autism. All of these things were dx'd once I sought out a second opinion.

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