Wednesday, February 20, 2008

My Child Can Do More!

Oh, how I hate the 'testing' time at speech therapy for James. She's a great therapist, so I'm not dogging her at all. However, she only gets him 45 minutes once a week, and he's out of his 'element' there, with new toys, new books, etc. AND, sister is not there to distract him, although he gets plenty distracted even without her. Oh, and let's not forget how difficult it is for him to do things "on command" when they only ask once or twice. And he only has 45 minutes or less to say things 'sporatically'. So, when I was told that in a year's time he's only made about 50% or less improvement, I was less than ethusiastic. I was downright depressed, and cried all the way home. I'm not quite sure what I was expecting. He's got Fragile X. Without a miracle, he's not going to drastically improve over time, especially as things get more complicated. BUT EVEN THE SMALLEST IMPROVEMENT IS GREAT FOR ME! So, I went through a lot of emotions. As I was driving home, the Lord showed me some great things.

One, He reminded me of all the things I mentioned above about how once a week 45 minute testing in therapy just isn't reality for testing. His everyday life at home and at school are better indicators. He also showed me how far James has come in his vocabulary, especially since Grace has been talking.

Second, after we got home that day I started to fix James' lunch. He came up to me and sporatically said, "May I have turkey please." FIVE WORD PHRASE! I decided reading the same books over and over and over and over again is a gem. That phrase came from the book, "May I Have a Cookie Please."

So, needless to say, I couldn't deny all those reminders and blessings. The Lord also reminded me that He alone entrusted my husband (okay, I have to fess up....his name is Jim....I can't keep calling him Henry - doesn't fit him - HAPPY RIAN?!) and I with these great kids, and He alone will continue to hold all the plans in His hands. While I wish I could see them all layed out, I know that would ruin all the joyful moments of watching them happen.


becki said...

I love reading and keeping up with your blog! You're such a strong and wonderful person!! :)

r_is_moody said...

Yes, I am very happy that you are not married to Henry anymore!!!!

Kristiem10 said...

I can totally relate to this. I am glad the God gently reminded you of the reasons the testing is not accurate. Plus, it is well-known that fragile X kids do not test well, and results do not reflect our kids' actual abilities. If I put too much stock into what test results said, I would be very depressed, indeed.

Jen said...

I agree! Numbers and labels mean very little, although it is frustrating when others can't see what you can.
Is he in a general ed. classroom, MI, or MO? Kyle (16) has always been in a MO with some mainstreaming. Looking back, I'm not sure if that was the right decision--he was the highest functioning (but I loved the teacher:-). For sensory resons, it was good for him. Matt (14) has been in a MI with mainstreaming. We have some huge issues for when he go to high school next year. When Evan starts school in a couple of years, I will be prepared!

Jen said...

ooops...goes (not go) :-)

fragilemom said...

Jen, what is MI and MO? Maybe different states have different terms for classes? James is in a PPCD program, which stands for Preschool Program for Children w/Disabilities at the elementary school where my husband teaches. It's a 2 year program with option to qualify for 3 years. This is James' 2nd year and he will qualify for the 3rd. So, we have 1 more year before we have to decide what to do for kindergarten. Nothing looks too appealing to me right now to be quite honest.

Jen said...

MIMH---Mild Mental Handicap
MOMH---Moderate Mental Handicap
After attending the developmental preschool, Matt went to kindergarten half a day, and he was in a self-contained MI room for the other half. In first grade, he was in the MI room with a lot of mainstreaming into the general ed. class. His time in gen. ed. rooms lessoned as he got older.
You're right. The options available aren't very appealing. Even if you push to have your child in a gen. ed. room (I don't know how your school operates..there are some that are very big on inclusion...ours isn't one of them), you have to hope and pray that the teacher fully accepts him, and that there is a strong support system from the special ed. end. When I started going to IEP meetings, I didn't realize that I had options; I went along with what they told me was best. That included sending the boys to a school that was 10 minutes away from our house (where they had the MO room) instead of the one that our daughter went to which is 10 seconds away. Although I liked the other school and adored the teachers, I didn't like the fact that the boys weren't in the same school as their sister. Inclusion at her school was never even offered as an option, but now I realize that I could have pushed for that.

Paula Fasciano said...

I wish there was a better way to test FX's amazing that no one has figure out a better way to assess what they have inside them!
I just came acorss your blog in a blog search about Fragile X and I've added you to my can feel free to do the same.