Memory problems

[Guest guest]

Please tell me someone out there has had similar experiences with their kids.

Yesterday we were at the place where Bobby gets his therapy for learning to

listen better. When you can't hear correctly from birth, and no one catches it,

the brain doesn't develop auditory synapses the way it should so now we actually

have to exercise those neurological pathways to get them up to speed. We have a

long way to go with Bobby because he was caught so late.

So I was sitting there at his therapy session. I am an integral part of this

kind of therapy, (I don't wait for him or anything, I am supposed to learn from

the therapist what to do with him so I can do it during the week at home). It is

very mother/parent oriented, which suits me just fine because I have been so

excluded from everything that involves his hearing until now. The school doesn't

understand and doesn't know squat, and I don't trust them at all. So this AV

therapy is very, very important to me.

Anyway, I was sitting there in the therapy session and she starts to ask him

about the necklace she has on her neck. It was one of those bug catchers with

the magnifying glass top, small enough to wear around your neck. There was a

lady bug in it. Bobby has seen lots of lady bugs in books and in real life, so I

thought he'd know right away what it was. She put her hand over it to block it

when he wanted to see it and she said, " I want you to guess what it is. I'll

give you hints " (This trains him to have to LISTEN to her and remember the clues

as she goes along...something a normal child can do, but you couldn't imagine

how Bobby struggles with this kind of thing.)

So she says, " It is orange, but sometimes they are red. It is a kind of beetle.

It has black spots on it. " When he couldn't guess, she started to draw a lady

bug picture, and I'll tell you, it looked as good as any lady bug I've ever

seen. He still couldn't get it. We described all about it, the wing cases, the

things it eats, where you find them, I told them we had lots of them in the

house one time when they were migrating, and it didn't do a thing to help him

remember the name. It's like he had the word somewhere in his memory, but he

couldn't bring it back up.

So we finally told him it was a lady bug (after going as far as to say to him,

" Lllll...aaaaa....ddddd....eeeee....... " ). OK. That exercise was supposed to

take 5 minutes, it took him 20. Then we went on to a book about bats, he picked

it out. First we write down what he knows about bats. He said they can fly. So

far so good. He couldn't tell us anything else about bats, which is OK, so we

started to read him the book and it was a simple, easy reader book with all

kinds of facts and pictures about bats. We told him stories about bats, where

they live, drew a picture of what an attic was because he couldn't come up with

that word either, she told him that she grew up on a farm and the bats used to

live in her barn, etc. Then when the book was done, we asked him what he LEARNED

about bats. Apparently this is something we normally hearing people do

automatically...we know something, ask lots of questions, and then we learn

about it and sto! re it in our brain. A hearing impaired child doesn't do that

as easily and they have to be TAUGHT to first asses what they KNOW about

something and add to their memory what they LEARNED about it later.

Guys, he couldn't tell us more than one or two things about bats. Then she

pushed deeper and asked him " Where did I say they lived when I was a girl? " He

couldn't remember. She told him all kinds of basic things, like " Where do

animals live? What is the building called? What is the building on a farm where

the animals are kept? " Still nothing. Then she drew a pretty good picture of a

bran, a dead giveaway to any other 6 year old, and he could not bring up the

word barn. It happened over and over and over with the most common, simple

words, ones he uses every day in other circumstances.

Each time she would use another word, or another clue, I could feel myself

sinking deeper and deeper. I knew things were tough for him, but I didn't

realize he can't even remember a simple word like lady bug or barn, or attic, or

puppy. He couldn't remember a baby dog was a puppy, even though we have one and

we had just explained it to him a few minutes before. I was shell shocked. This

poor kid is going into kindergarten next week and he can't even keep up with a

conversation by his peers which, to him, will whiz by him at lightening speed

while he's trying to remember the first word of the sentence.

So even though I tried so hard to fight them back, I had tears dripping down my

face after a while. Bobby was so scared that he went to sit in the AV

therapist's lap. He didn't know what he had done, and I felt so bad. I told her

I was scared to death, that I didn't know what to do for him, and I didn't know

how he would ever cope in kindergarten. She was concerned that if I couldn't

detach enough from him then I couldn't do the AV therapy at home, and in order

for AV therapy to work, it is crucial to have parent involvement. I understand

what she is saying, she was concerned that I would devastate him by getting

impatient or upset, but how the heck can you detach yourself from watching THAT?

I couldn't.

So now I felt like I was having my AV therapy threatened because I couldn't hold

it together. Strike two. I felt like I couldn't do anything right yesterday,

nothing I have ever done for this kid was right. Ever have one of those days?

This therapist is the one and only person who understands hearing loss and helps

me help Bobby. Without her, I am totally alone. (And she wasn't being malicious

in any way, she was totally concerned and worried that I wasn't in a place to

help Bobby. I really love this therapist, she is kind and caring and patient

with me and with Bobby.)

So I left crying, I drove home crying, and I went to bed crying. Just when I

think I might be able to sail clear for a while, something else comes to knock

me down. She thinks he might have some kind of word retrieval problem, maybe

some kind of brain damage from all the medical stuff, maybe it's auditory or

memory brain pathways that are in desperate need of work, she doesn't know. But

it needs to be watch and addressed soon.

Today I did some of the AV work with him and he did better, but when I asked him

to tell me 6 boys' names, he froze at 4. I had to prompt him to tell me the

names of the boys in his class, the name of his grandfather, uncle, etc. It is

so hard to sit back and watch this unfold as yet another area we need to focus

on and one where he needs support. It will only make learning in the later years

impossible and god, guys, he's already working so damned hard. It seems so

unfair.

Some days I hate this so much. It's like I started out with a perfectly normal

little newborn, and inch by inch they ate away at his strengths by the

surgeries, and medications, and infections, and all that time laying there in a

bed fighting for his life. I know I should be grateful he is alive, and I am,

but today it just all sucks and I want to trade places with him. I want to be

the one who is brain damaged. I questioned my ped if he thinks i is possible

Bobby had a stroke, which is quite possible, or seizures, but he thought it was

unlikely. With all that he has been through, all the clots he has had, the time

on bypass, the anitcoagulants he was on, the valve problems and just the fact

that he had a heart defect, it is more than likely. But, I am not pushing the

issue because I can't really handle much more.

Sigh. Thanks for letting me ramble on.

Trish