Monday, October 28, 2013

Progression. I think.

One of Rhys' teachers, Ms. Nikki, pulled me into the classroom when I came to pick him up after school recently. She was all excited and had to show me what Rhys could do! 

She had been working with him and was eager to show it off, so she sat on a tiny chair with a board and letters in her lap. Rhys stood in front of her and picked up each letter, one at a time, and placed them on the magnetic board. When he was done, he had spelled his name correctly! He had picked up each letter, in their proper order, and arranged them after each other! By sight! Woohoo!!! 

They were both pleased with themselves!

Nikki told me how she had been working with the children on recognizing their names and learning the letters and shapes and arranging them in order to spell. Rhys is the only one who can do it!  How wonderful is that?  (he learned to recognize his name last year when he sees it spelled)  I know that I shouldn't be "too proud" that my child is quicker at this than the others, but I can't help it!  However, I was told that a few of his classmates can tell what which letters are by sight, but Rhys can't do that yet.

Nikki was working on that with him as well. She asks Rhys, "ok, do you know what this letter is?", and she points to the Y.  He looks at it, looks lost, and shakes his head. No idea.  She tries to prompt him by raising her hands in the air into the shape. He remembers her doing this and that it means something, and so he grins. But he still doesn't know what to say until she exclaims, "Whyyyyy?" with her questioning hands, and he acts it out too, repeating after her!  Very cute!  

A few days after that happened, I was talking with his other teacher, Ms. Harmony, about Rhys. I wanted to know how he was doing, since it had been over a month now of school. I didn't want to ask too soon, and wanted them to settle in first, and I even struggled with even wanting to ask at all. I'd rather they approach me if there were issues, that way if they didn't then it could all just be in my head. But I also knew that I wasn't imagining it. I couldn't have been. So it has been tough for me.

But I asked cautiously how he was doing. Rhys had already run on ahead into the classroom to join his friends at circle time with Ms. Nikki, and so I had a chance to talk uninterrupted. She said that he was doing great. He was playing well with the others, and was engaging and enthusiastic. (don't I know that! He loves to use his loud deep booming voice and yell, "HI MOM!" or "BYE MS. HARMONY! or "I LOVE YOU!"  It's like a dramatic narrator's voice!)  I was happy to hear that, and wasn't surprised. I was starting to wonder if she even had a "But..." in there.  Then she mentioned that he does have poor memory; he has not been catching on to the things they've been teaching sometimes. (like what the letters are. or colours, but I already knew that too. In fact, over our summer camping trip, my good friend and her teenage daughter were trying to teach Rhys his colours, but he was not retaining the information. Not that moment, not a few minutes later and definitely not hours or the next day. They gave up after three days.) So that is something that will have to be addressed.

She told me that there was a parent's fair coming up in Langley. It's actually the Lower Mainland Annual Toy & Product Fair 2013,  but there is an opportunity to connect and meet with child development professionals to discuss behaviour challenges, milestones, early learning, speech and language, etc., titled Child Day. (Children's Health Information Learning and Development)  She wanted to let me know about it in case I was interested, and so now I'm hoping to check it out. It is being put together in part by Langley Child Development Centre. 

I mentioned how we were referred to the Surrey Child Development Centre for preschool, but that was it, and we had chosen not to attend there due to it being in the total opposite direction of where we travel. But due to us living technically in Surrey, we haven't been in contact with the Langley one. Despite our school and our pediatrician being in that city, and most of our shopping and our church being there. Which got us into a discussion of Ms. Harmony being able to refer us to the Langley CDC, and how Rhys could use the assessment and we would benefit by having it done. We even discussed our pediatrician Dr T, and how Harmony knew her and had dealt with her before, and it resulted in a none-to-pleasing way (which I totally understood. The only reason we are still seeing her is that we have been through so much already that I would hate to have to find a new doctor just to have to go through the whole process of getting to know them, and giving our story, and going over tests again. Plus, I keep hoping that we will find something and be able to move on from her. By seeking a new pediatrician, Harmony's daughter is on a wait list, and I am glad that we don't have to do that.) 

I'm not too sure what will happen or if there is a wait list, but I filled out the form for the Supported Child Development Programme.   A lot of programs seem to end once the child has become a certain age (usually 5) and/or started attending school. So we don't know what is available for Rhys now that he is 5, but not attending the school system. (preschool doesn't count as "school" yet) But it looks like this program works until they are 18, so that is good news.  I just don't know how it will help yet. Is it like the Infant Development Program that he was in, where they did home visits monthly? Or is it like the Early Speech & Language where he went for therapy once a week, and I attended weekly night classes for a month?  I am anxious to get something going though.

I feel so frustrated with how lax it has been for him. And I'm a bit angry and sad at how he was phased out of the IDP at age three (like every child), with nothing to go on, even though he was so far behind. Michele knew he was delayed, so why wasn't anything put into place? No referrals?  Is it all due to me believing that he would "get it one day", and so I didn't think we needed to? But even if I thought that, shouldn't she be the one telling me that we should check it out, "just in case"? *sigh*  I'm not trying to pass blame, and I'm sure it sounds like I am, (I really did like Michele, still do, as she was the one who helped me out with my preemie boys for so many years) but I am just sad to think that we could be a year or two ahead of ourselves if only this was done before he left IDP.

Remember, this whole process of looking into his delayment didn't start until last year November when he was really sick and in hospital. Not even a year ago yet.

But I'm also frustrated that despite seeing Dr T for almost a year, we're really not much further ahead. Well, I guess that all depends on how you view things. After all, we can say that it is NOT WS or  FXS (although, I still admit to wondering if it is possible either of those test results were incorrect. But that could just be my desire to have an answer so we can move on. I like moving on. It's so much nicer than not knowing and waiting for something to come up and feeling frustrated.) I am also bothered that it still feels that she was more interested in his growth and weight than his development, and I wonder if she shouldn't have referred us to other groups herself. When we see her again in November, I know she will not know what to suggest for us; we're still just waiting for Genetics.

Ms. Harmony photocopied a handout that she had in her classroom on how to be a good advocate for my child. I've heard those terms before. I've been told how parents of Special Needs children need to Advocate! We need to fight! We need to be heard! It's an uphill battle!

And it frightens and overwhelms me.

I don't know if Rhys is Special Needs. But if he is, why do I need to Fight for him? Why does it have to be a struggle to get him the proper help he needs? Why do I have to prove to the ones who are working with him that he needs extra support? I don't understand that. It just doesn't sound right to me and it makes me angry to think that all these parents go to IEP meetings and come home exhausted and angry that their child is "slipping through the cracks" because of school bureaucracy.  Will I have to do this one day?  Can I be the advocate my child needs? (not WILL I, because there isn't a problem of me wanting to, but an issue of me being able to. Do I have the voice?)  But I am getting ahead of myself.

The first thing on the To Do list of Parental Advocacy is 1) Know your child's needs.

Oh good.

I don't know what they are. So far I know that he is "different", but I don't know how. And he doesn't seem to retain information the way that we all seem to.

Also on the list was "Join A Support Group of other parents with children of the same issue."

That would be helpful, thanks.

"Know who the players are, the ones who can make things happen, the ones who are the top in the fields you need to approach. (like school superintendents, etc) Learn how to write letters. Bring friends to meetings so that you can be focused and can remember what was said. Get things in writing or record conversations you have."

Are you kidding me? Oh, God, please don't let it come to this for Rhys. I don't know how to cope with that. Why do I need to have to convince a bunch of people that my child is just as important as another child and that they deserve to have the same chances?

But this is life. And it is hard.  And this is the reality many parents have faced daily.

I don't know what to do, where to go, who to talk to. I don't know what his issues are or how to get to the next step. I don't know what is in my head and what is an actual problem. I don't know how to be his advocate yet. And I feel scared that I will miss something and mess it up.

Ms. Harmony remembered that she has some ASQs in her desk. She went on a two-day conference to learn how to do these tests, but that was eight years ago, so while she can give them, she can't remember how to mark them! That may be a problem. But she is going to print some up for us. She will try to fill one out in class time and I can do it at home and hopefully that will give us something to go on. Maybe I can find someone who can interpret the answers for us!  The last time he has an ASQ done, he was 40 months old and he scored at a 30-36 month level. It will be interesting to see what it's at now. (since he fits in with the 4 year olds, even though he's 5, but is still lacking in some areas.)

So, some progression forward. I think.  The teachers see something, but nothing obvious yet.


Powered by Blogger.