Tuesday, December 25, 2007

Response to comments on my previous post

I originally posted this in the comments section of the previous post, but it was really too long for that so I'm making it into a new post. If you have no idea what I'm talking about, read here first.

Thank you all for your comments and your support, it means a lot.

We had an easier morning today, and everything always looks a bit better after a few hours of sleep. I think sleep, or rather lack thereof, is a key issue here. She doesn't sleep enough (not for lack of trying on our part), and then she's constantly overtired and at the outer limits of her coping skills. We're thinking maybe it's time to focus on that above all else for a little while and see if it helps. Not that we have a way to do that, but maybe L (her therapist) will have some ideas.

Maddy - I think (and her ST thinks, not sure about L, we see her tomorrow) that a lot of this is all the recent changes in our normal routine - grandparents here, Jay and I away (even though M had a blast it was still a change), grandparents leaving, Hannukah, etc. We're hoping that as things settle down again that so will she.

Jeques - you're a very kind soul. Thank you.

Margalit - I know you can understand this. Thank you too for the legal information. The specifics don't really apply since I'm not in the US, but if we do need to do some serious advocating I'll definitely pick your brain first.

Susie - I'm going to e-mail you (and thank you for the offer). I'd like to talk with you about whether we could/should incorporate some aspects of picture communication without compromising the progress she's making (and she is) in using her words. Maya CAN communicate very well and in long and complex sentences when she's present in the same plane as the rest of us. It's when she's not that's the trouble, and lately she's been "not" more often again. Sigh.

Anon and the others who talked about special ed programs, etc. - I appreciate your suggestions and it is something we've talked about with the Child Dev people (Hitpatchut HaYeled). None of the professionals seem to think it's warranted (at least for now) because she IS doing well in a regular private preschool setting. She actively participates, answers questions, interacts well and appropriately with staff and children, etc. Her real difficulties are in things like free play, where she prefers to be off in her own world much of the time and discourages interaction. Some of that is just who Maya is, but she still needs encouragement to interact more and at an age-appropriate level. I'm very concerned about the move from a small well-staffed private preschool class to a huge public kindergarten. If we, together with the professionals, feel that it is necessary we will fight to get her into either a communications gan or put her into the Democratic School (child-led learning) if need be. It's all about whatever is best for Maya, and right now we just don't know where she will be emotionally, developmentally, etc. in September. Cognitive tests (and our own observations) show that intellectually she's advanced for her age, and while I'm afraid of throwing her into a social situation that is beyond her, I'm also concerned about holding her back intellectually, that that could make her frustrated and bored in school and thus less engaged.

Her actual Hebrew language skills (English was never a problem) have improved significantly. She is talking a LOT more and using much more advanced sentence structure in Hebrew now, and her ST is really pleased with her progress there. We still have a long way to go with expressive language though - actually using her words - and in bilateral communication, particularly in times of stress.

Again, thank you all for your kind words. They help. A lot.


Kathy said...

Hang in there Robyn. You manage so much in your life that it's no wonder that you sometimes feel overwhelmed. You are a fabulous mother...just keep remembering that!

Toto said...

Robin, I await your email and would be happy to help you think it out. In my experience, pairing the pictures with the words (and not accepting JUST picture pointing, but instead expecting the word to be paired with it) does not compromise the speech. Instead, it cues it, especially as you put it, in times of stress. It is definitely something to talk over with your speech therapist, and as I said before, I am happy to help with any suggestions, etc. Hugs, it's not easy.........remind yourself you're doing a great job! :)

Anonymous said...

Hugs babe.

This happens with Boo. I have despaired, rejoiced and despaired again too many times. So I feel your pain. And frustration.

But I will say that we usually see this behaivour (worse) before a big break through. Also Boo (and many many other kids I know) spend so much energy and effort concentrating in school and therapy that they have to let loose some time. And if home is a comfortable place, then that is where they will let go.
It is actually a compliment! It totally sucks, but it means that they are feeling safe at home.

Hope this makes sense. I have had a little too much holiday cheer today and probably not making much sense :)

Susan Helene Gottfried said...

See? Trevor grabs your boob and all is well in the world. Sort of.

#1 was a bit behind socially when we enrolled him in kindergarten. He's caught up -- because I work REALLY hard to have friends over or ship him off to friend (quite unapologetically, too). Maya can, despite her struggles, make up the social differences. Trust your gut; if she's advanced cognitively, don't hold her back.

We fought all last summer to get #2 accepted to kindergarten early (her birthday is two weeks past the cut-off). I know how to fight to get what you want.

In short, I'm here if you need me. My kids may not have the struggles Maya's had, but I can still relate and, hopefully, help.

Nancy said...

"If he brings you to it, he'll see you through it"

For all the posts I have read of yours, and not knowing you, hands down you are a wonderment and beautiful person, wife and mom.

Hold on, take a breath, and don't be hard on yourself. You ARE doing a good job.

Head Gaggler said...

Being a mom is the hardest job in the world. I too often wonder if I am doing a good enough job with parenting the kids. Just know that you are a wonderful mom and just what your daughter needs to help her through this time in her life. I hope you can work though all of this and find out how to make her the best person she can be.

Jo said...

big hugs from me.

Anonymous said...

BIG HUGS, Robin. I love how you can express how you feel. I feel the same way with Josh's Diabetes. I just get so tired and frustrated with the days his sugar levels are so HIGH and I've done everything I can think of to bring them down, and it takes all day, just wears me out emotionally, physically, and mentally.
I feel your pain and frustration.

Mel said...

More ((HUGS)) Robin. I know Maya couldn't have a better mum. I hope that today's apointment provided some positive answers.

Robin said...

Not a one. It got pushed off till Friday morning.

I did have a long talk with the speech therapist though, and Maya herself sees L tomorrow.