"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!!!

Tuesday, January 17, 2012

Sasha's 3rd Birthday

Here is one of my catch up posts as Sasha had his third birthday way back in October. I didn't want to leave out this post though. Last year, Sasha's first year home with us, we threw him a huge party... the party he had never had. His birthday had never been celebrated, not even on his actual day of birth, so we wanted to give a party like he had never seen! It was wonderful. He loved it and we loved it. This year, I became a bit nostalgic and sad that I was not there on his actual day of birth... such an unbelievable time between a mother and a child. So, I decided that this year, we would have a very small, intimate party with just us. This too was wonderful and just what we needed. Sasha loved it and was so excited when he woke up from his nap and saw the house decorated with his favorite red guy, Elmo! Here are the pics from that special day...

He was so excited when he woke up from his nap and saw the house was transformed for his party. He was beaming! I'll never forget the look on his face... what a joy!



The cake I made him. I am not a big fan of a lot of food coloring, so this was my solution. To not have the whole cake be a big giant red monster but rather to just put his face on top. Sasha loved it!



Admiring his cake...



Pointing out his cake, in case I had not seen it...



Checking to make sure he has a birthday banner up, just like his brothers, in the exact spot the others were placed. Such a smartie!



Such a cutie!



Our perfect little party. Sasha had one of his favorite treats for dinner too... mac n cheese!



Such a cute older brother!



He was pretty excited to be the center of attention while we were singing Happy Birthday!



Sasha actually ate his cake this year! Last year he wouldn't touch it.



Brooks tried to get Sasha to eat his cake on his own, like this..



Heath tried too...



Daddy tried too but alas, all the attempts were unsuccessful. Sasha just laughed at them!



Elmo pinata before it got smashed. It was kind of sad hitting Elmo... I mean, look how happy he is!



His brothers got him a candy jar filled with his favorite treats, M&M's! He loved that!



An Elmo costume for Halloween!



An Elmo shirt... what's not to love!



This was his big gift... an "aquarium" (that plugs in & doesn't require food or water changes, yay!) from Gram & Pa. He loved it as did his brothers as well! This is from the next day... Sasha couldn't get enough of it!



Telling me all about everything he sees...

Tuesday, January 3, 2012

Kindle Fire

First, let me start off by saying that I am really behind on my blogging and for that I apologize. Sasha has a wonderfully large group of supporters out there who mean so much to us and my intention has always been to keep blogging so everyone can watch his progress and growth. Sometimes, things get a little busy though and before you know it... it has been 2 months since a blog has been written! So, instead of getting stressed about all the things I haven't posted but wanted to... I am going to just try and start blogging again from where we are at now and if I get to the previous posts eventually, then all the better! So where are we now? Well the post I wanted to start off this new year with is about a gift that Sasha received for Christmas.

As you can see by the post title, Sasha received a Kindle Fire for Christmas and it has been wonderful for him. These types of touchscreen devices like the Fire, the I-Pad, etc. are absolute blessings for individuals with limb differences such as Sasha's. They can do so much on them and are not hindered in the slightest because of a limb difference. Independently, he can play all sorts of educational games (which is great for working on his language skills!), read book, have interactive books read to him by the device, watch movies/tv shows... the list goes on and on. Here are some pics and videos of Sasha and his Fire...

Playing the piano at his desk...



Working on that alphabet...



Loving the new red case that holds it upright...



Oh, & did I forget to mention that the other boys each got a Fire as well (well not daddy but the little ones... oh and me as well)! Thanks Ami & Papi for the Fires & thank you Gram & Pa for loading all of them up with great material! The boys are very happy (as am I)!



I just had to add this one in because he is just so cute... plus, it shows just how big he is getting. This was taken on New Year's Eve. Doesn't he look so much older?!



Working on his shapes & letters... sideways of course. He loves to push all the wrong answers before he pushes the right one, even though he knows it... that little bugger! Look at that smile!


Concentrating hard on his alphabet...


Sasha loves Go Dog Go & was so excited to read it on the Fire. He was flipping through the pages like crazy & kept going back to his favorite page where they go around & around on the ferris wheel.


A little song on the piano to close this post...