Sunday, November 24, 2013

new referrals

So that's what it feels like to advocate for your child.

I feel weary. And emotional. But that could be unrelated; after all, my thyroid is all wonky and I have a sinus cold.

A few weeks ago, one of Rhys' preschool teachers suggested doing an updated ASQ. She did two of them during class time, and I filled out the ASQ-SE for 60 Month/5 Year. Filling those out feel make me feel so sad. It's hard to see the limitations that your child has right in front of you. But I was surprised, and also relieved, to see that Ms. Harmony had a few different results than I did. When I filled out The Ages & Stages Questionnaire: Social Emotional, my results (I found out that the scoring guidelines were written on the back on the questionnaire) showed him "at risk". Actually, the recommendations on the back were to "refer the child for a mental health evaluation." Which sounds much scarier than 'seek a second opinion' or 'refer to doctor'. Thankfully, the result in class were just fine! What a relief! He is totally on par with his peers on a social/emotional level. So either he only "acts out" at home, or his behavior is actually considered 'normal'. Needless to say, I've been paying more attention to it at home now. 

Interestingly enough, I answered "most of the time" to the question on whether he could settle himself down after periods of exciting activity. Ms. Harmony checked off "rarely or never".  (I can see that now if I really look at it. Yes, he does take some time to unwind when he gets excited and giddy.)  To the question "does your child cry, scream, or have tantrums for long periods of time", I responded "most of the time", and again, she said "rarely or never". (oh, this boy can be very determined when he is upset and wants something. But in some cases, yes, I guess he can be distracted to something else. Sometimes.) In class, he moves from activities just fine, and loves to explore new places, which are two things I had never noticed at home.  So my concerns are not a reality in preschool right now, and what a wonderful thing to realize!

Ms. Harmony also did a regular ASQ on him, which is for a child 57 Months through 66 Months (good grief, I'd be happy if they stopped using weeks and months after 6 weeks and just went to years in stages! It's too much counting and figuring out for my little math-challenged head!) ----he was 64 Months when this test was done (end of October)  His last ASQ through IDP was done at 10 months old, when he scored above the at-risk level for everything except gross motor, where he was not rolling over or crawling or pulling to stand yet. I do have a Gessell Developmental Assessment report done at 17 Months old, but I am thinking of emailing our former IDP Consultant for the results of the one done at 3 years old, since I can't seem to find it. It would be nice to see how things compare now to then. Has he gained or lost? Did we not have any concerns then?

In the 60 Month ASQ, he scored low for Communication (not surprising, since he was in ST...and I am frustrated that he was phased out and forgotten by SESLP.), Gross Motor (not surprising, considering he always has), Problem Solving (which is sad, since he was in range at 17 Months old)  He is on par for his peers for his Fine Motor (actually, his teacher was impressed with his drawing and cutting skills. Oh yeah! *brag*brag*) and his Personal Social. (just like his earlier SE said!)  The results suggest that "further assessment with a professional may be needed."  (that sounds much nicer than saying he needs a mental health eval!)

His teacher said that she could put a referral in for us to the Langley Child Development Centre (you may remember our conversation here), and so I got a phone call from a supervisor there. That was frustrating! I had to explain to her all the things that were a concern about Rhys, but how do I explain it? It's not obvious. He acts, behaves and talks differently, but how do I put small incidents into words so that it doesn't look like an over-reacting mother? I want to say "don't you see this? that isn't typical, is it? what is going on?'

I thought the SCD would be able to help me---and in a way, they have. But not in the way I expected. I had hoped that they'd have Rhys come in and they'd assess him and they'd get me the resources I needed. But since he doesn't need any support in the classroom (which is a good thing), they aren't going to open a case for him.


I understand. And I am happy his needs aren't glaring. And I do appreciate that they aren't going to waste my time and raise my hopes, but I also feel deflated. I guess my hopes were already raised by my own doing.

The Supervisor did give me a few suggestions though. The first was to get our pediatrician to refer us to Sunny Hill, in Vancouver. But seeing as this hasn't been the top of Dr T's list, I'm going to skip her and get our Family Doctor to do it. (she has offered to look into Rhys already, to see if she can come up with anything)   The wait list there is likely a year long as well, but it's a start.  I had never heard of Sunny Hill when she mentioned it, but I recognize it now from the fundraising they do. It is a centre at the Children's Hospital that deals with disabilities in children and youth, for rehabilitation and development. They will do full assessments and have a have full staff to cover everything. So it may be a good place to check out.

The other suggestion was to speak to our principal at the children's school (and where R will attend K next year). I'm not too sure what to talk to her about thought. I have nothing to bring in to her, other than ASQs say that he is delayed. I don't know what kind of support he will need or what options they have available. So I am putting this off until the new year.

 She did also suggest that maybe we'd like to have a developmental assessment done on him privately (she gave me two names to check out), but she warned me that could cost anywhere from $1000 to $2500. Eek! Yeah, no. Thanks though, but we don't have that kind of money to use on something like this. (my friend just told me last week that she and her husband were looking into that for their daughter, who has ADHD and maybe some other issues, and it was going to cost them $5000! Yikes!) So I'm praying that our assessment can be done at the Children's Hospital, where it won't cost us anything.

Sometimes I look at Rhys and see that things are okay. He's playing well with other kids. He does regular things. And I let myself see that maybe it's all in my head. But then I am reminded that this has always been there, in the back, and we've always kept it there, but his delayment has been there in various forms since birth. And I am frustrated that I can't pin it down and I don't know what to do.

Last week, on our drive to the school to pick up the Olders, I was going over colours with the Youngers again. I do that every now and then. I'll tell them at each stop light that "green means go and red means stop" and then I get them to tell me which colour is showing. It's fun when they get it and can tell me when to go! For a while, in the summer, it seemed as though Rhys was starting to get it, but I can see how it's all been forgotten now. At each and every stop (which happened to be red for each one), which aren't that far apart, just a few blocks, I would ask again, and at each stop he would not remember. I can understand needing to remind him, but he should've been able to guess or start to recall by the second or third stop. And he couldn't. It was tough. Even he could tell! He said to me, "I don't know why I can't 'member!", with a shake of his head. I just tried to smile and encouragingly said, "that's ok, you'll get it soon!" 

Eden is starting to get it. She has Pink and Orange and Green figured out a good 90% of the time! *smile*

But he'll get it soon. I hope.


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