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Forum: Children with Special Needs

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  #1  
March 22nd, 2010, 09:53 PM
Effervescence's Avatar Platinum Supermommy
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Hi everyone. I introduced myself last month, or maybe two months ago, but I haven't really been back to post much. I've lurked a little. This is really long, and I probably should have divided it into two posts.... Anyways, my son is Jonah and he's had a lot of issues since birth. All of them have thus far been treated as separate entities, but his doctors are just now starting to scratch their heads and try to think of underlying causes of all his health and developmental problems. He is 19 months old and has been evaluated at between the six to nine month old level on various developmental areas. He has no verbal expressive language. None. Not a single word. The "words" he has are not expressive words, they are just things like "yum" "yay" "moo" (a cow goes..) "woof" (a dog goes...) These are all new things that he's just added since going to speech therapy last month. There are several phonemes that he cannot/does not make that he should be making. no /k/ or /b/ etc. In fact at the time that we got him into therapy, the only sound that he was saying was "dadadadada" (he had been making sss and ja and mmmm, but he stopped) He communicates to us through sign language. He also cannot walk. He takes some steps, but not very many. We were so excited when we were on vacation, we were visiting an aquarium type place, and he wanted to walk everywhere while we were there! And he did it! We thought we might be out of the woods for braces, but since then he hasn't cared to walk much at all. Today we went and had castings put on his feet. It was either casts or braces. The orthopedic surgeon was concerned about his low muscle mass as well as the development of his ankles. He is working with his team to see if they can think of any underlying causes of everything, and he is going to refer us to (another) occupational therapist for further evaluation and therapies.

Last week, we went to our first private speech therapy, the audiologist, the ENT, and he was seen by the PDD specialist for the first time. The speech therapist was great. She said after this initial eval, there is a seven week waiting list UNLESS we are available for a timeslot on Wed mornings. Hmmm, wait seven weeks or take the timeslot, easy choice! So we might get in as early as this week, or next. The audiologist did another hearing test, this one more in depth. He responded to sound in the normal range for voices, but not in the higher or lower registers. He fell asleep during the test though, so she (and I) thinks that he was just getting bored and hot. It was SOO hot in that little room, I thought we would suffocate! So she did not want to do the further testing which requires him to be sedated. She said if he makes no progress with speech therapy, then bring him back for those tests. The ENT advised against tubes in his ears, and confirmed what I already knew, that his soft palette is complete and normal (his dad was born with an incomplete soft palette- which is like a cleft palette but in the back of the throat instead of the front of the mouth) He's been checked for that several times, so I would have been surprised if he said it was incomplete.

The PDD specialist hasn't told us much, other than he has tendencies, but he's too social for her to just call it. They are watching him for PDD-NOS. He is very social with adults, but terrified of kids. When we were in the waiting room for speech therapy, a little boy about his age came into the room and wanted to play with him. Jonah freaked out and crawled to the boy's father. A total strange adult. But he was terrified of the little boy. I was really scared when I saw him do that... he went to a stranger In our EI group therapy classes, he absolutely won't participate with the other children. He goes to the furthest toy away from the group to play with. Even if they are doing an activity that he reeeeally wants to do. The specialist has observed him in class with the other children, in the classroom with just the therapists (without me) and in the room just with me. She is coming to our home on Wednesday to see him in his routine, and then next Monday she will do another standard eval. We're also going to see a specialist autism spectrum disorders from Columbus. He comes to the center once a month, and we are on the list to be seen by him.

So far we have so many specialists and therapists that we see that I can't even count. My biggest fear is that we're going to have an appointment and I'm going to take him to the wrong doctor or therapist! Any tips on how to juggle a schedule would be great. Right now I'm using gmail and google calendar which is synced to my phone and sends me reminders of the time and location. It seems to work okay, but I don't really like google calendar, the way it's set up.

Today was a very hard day for me. I watched as they put my little boy's feet into casts, and I was told that it will probably be months before we stop using them, and then he may need braces. Reality really set in. I'm due to have our second child in about two months. I have no idea how I'm going to do this. Jonah is still like having a nine month old. I still have to carry him everywhere and hoist him up into his carseat, and most often guess at what he is trying to tell me. When I got pregnant, I thought about my sister who had her children the same age apart. I thought it would be no big deal to have kids this close... my nephew could walk to the car and climb into his seat while my sister put the baby in. He could tell her, in full sentences, how he felt and what he needed. He could help himself to snacks if she was feeding the baby and he was hungry too... things like that. I know every child is different, and I don't expect Jonah to be right where my nephew was at his age. BUT at the same time I keep wondering how am I going to do this? How am I going to carry two babies? How am I going to get them both into the car? How will I go grocery shopping? I don't expect a miracle to happen and Jonah learn to walk and talk in two months. I would never place that expectation on him. I just don't know how I can handle this....

Also I'm afraid that I either won't be able to give Jonah the attention he needs to thrive and really respond to his therapies once the new baby gets here, or I'll be so concerned about Jonah and his office visits that the baby won't get the attention she needs. I just had a good cry about all of this with DH and he told me I worry too much, and we'll figure something out that works for us because we have to. I agree, but I worry that what works for us might not be the best path to follow.

I guess I'm just looking for anyone who has btdt with adding a new sibling while still trying to juggle everything.
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  #2  
March 23rd, 2010, 03:54 AM
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I have no experience with most of what you're dealing with, but the Google calendar was going to be my suggestion for your appointments. Unless you have an iPhone, then I'm sure there's an app for it somewhere. I hope you figure something out so you don't end up at the wrong place. That's never fun.
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  #3  
March 23rd, 2010, 06:31 AM
quietsong's Avatar Just Another Slacker Mom
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Hugs, hon!! I remember when Jonah was born and have followed you off and on, and I hate that you are going through all this! My kids are that close but in reverse, with my "typical" child first and my SN child second, but even with a typical kiddo there are times both need to be carried and held. It might work to your favor in encouraging him to walk, to be the "big brother," you know? It certainly won't happen in the next 2 months, or all at once, but you may be able to use it once the baby is here to motivate a little. For the first while, for therapies and whatnot, baby will mostly cuddle, eat, or sleep... As she grows, you can actually include her in therapy time. Having his brother in therapy with him is a huge motivator to Danny, and Eric gains all the benefits too!

I hate booth tests and am glad that they feel his hearing is all right still! Speech delays are so frustrating though, because you KNOW they want to talk but just...don't...for whatever reason. Don't downplay the expressive language he has, though; those beginning sounds and words are a very key part of learning to talk! I'd give anything for them right now If you haven't received any yet, ask your speech therapist for some literature on how babies learn to talk; we recently received a handout that was very helpful in giving us some patience as Danny makes the journey. I'll try to remember to grab it and share some parts of it when I get home.

As for the casts and braces... I feel you there, but I can also say it's made a big difference for us! Danny got his pollywog orthotics a few months ago and it's made a huge difference in his stamina for walking. That's often the trouble with the low tone kids, they CAN walk but they tire so much easier. Our PT is actually low tone herself and wears inserts to this day, and she says she can tell a huge difference between when she's wearing them and when she's not. I hope Jonah's able to progress with them and do some more walking for you!
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  #4  
March 23rd, 2010, 06:42 PM
Effervescence's Avatar Platinum Supermommy
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Quote:
Originally Posted by MamaAnna View Post
I have no experience with most of what you're dealing with, but the Google calendar was going to be my suggestion for your appointments. Unless you have an iPhone, then I'm sure there's an app for it somewhere. I hope you figure something out so you don't end up at the wrong place. That's never fun.
Nope, no iphone. I am an extremely devoted Verizon customer, or else I probably would have one. I have a Droid, and I did download an app that is supposed to help organize things like this, but it was very complicated. Google works, the layout is just frustrating to me at times. The problem I'm worried about is that half of Jonah's therapies and appointments are at bowling green university, which is about a half hour south of us, and the other half are in Toledo which is about a half hour north.And I tend to drive "habitually" sometimes. So far so good though!

Quote:
I hate booth tests and am glad that they feel his hearing is all right still! Speech delays are so frustrating though, because you KNOW they want to talk but just...don't...for whatever reason. Don't downplay the expressive language he has, though; those beginning sounds and words are a very key part of learning to talk! I'd give anything for them right now If you haven't received any yet, ask your speech therapist for some literature on how babies learn to talk; we recently received a handout that was very helpful in giving us some patience as Danny makes the journey. I'll try to remember to grab it and share some parts of it when I get home.
Oh I'm not discrediting it at all, I am extremely thrilled that he has made this much progress! The therapist he's been seeing in group therapy is also really really happy about it. I was just making the point that he still has a long way to go, that's all. I actually studied how children learn language, in college. I was getting ready to go to grad school for speech pathology when Jonah came along and we decided it was best to wait on that. Actually one "silver lining" in all this (if there is such a thing) is that I get to talk to a lot of people in "my" field. It also means that they don't sugar coat anything becuase they know I pretty much already know, and if they start speaking jargon, I'm still in on it (unlike at the orthopedic surgeon's... he may as well have been speaking Japanese, which really added stress for me)

Quote:
but even with a typical kiddo there are times both need to be carried and held. It might work to your favor in encouraging him to walk, to be the "big brother," you know? It certainly won't happen in the next 2 months, or all at once, but you may be able to use it once the baby is here to motivate a little. For the first while, for therapies and whatnot, baby will mostly cuddle, eat, or sleep... As she grows, you can actually include her in therapy time. Having his brother in therapy with him is a huge motivator to Danny, and Eric gains all the benefits too!
You're right, I guess a lot of these are issues I would face even if Jonah were a typical toddler. I really like the "being a big brother" to encourage him to walk. It wouldn't work for now, he just doesn't get that, but it definitely will in the future! And I hadn't even thought about therapy being fun for both kiddos. I guess because it's not really fun for me LOL but hopefully by then we'll be out of this process where the appointments are mostly poking and prodding and unpleasantness, and into the play based therapies.


Quote:
As for the casts and braces... I feel you there, but I can also say it's made a big difference for us! Danny got his pollywog orthotics a few months ago and it's made a huge difference in his stamina for walking. That's often the trouble with the low tone kids, they CAN walk but they tire so much easier. Our PT is actually low tone herself and wears inserts to this day, and she says she can tell a huge difference between when she's wearing them and when she's not. I hope Jonah's able to progress with them and do some more walking for you!

Right now, Jonah's castings are to correct severe metatarsus adductus and tight heel cords. The doctor said he wants to address that issue now, and discuss the low muscle tone with his team to see if he can find something that ties it all together. Basically, Jonah's feet are always pointed, and the way his muscles have developed won't let them ever bend so they're flat, like a normal foot. In addition, the bone and muscle structure has developed so that the feet turn inward. The doctor said that as time goes by and he sees more of Jonah and his case, we might take further steps for the muscle tone, and he might need to continue with castings or braces even after his feet are corrected.



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