Thursday, September 13, 2012

An Aspiring Super Mom

Do you like my Super (Wo)Man shirt?

I ALWAYS get comments on it, "Hey Super Mom!" or "Are you Super Woman today?" or "You are super!" And it varies a bit from those, but I get comments every time I where it, nonetheless.

And I ALWAYS respond, "Oh, ppsshh, naw," or "Yep, that's me," or "No way, I just like the shirt."

Well today Baby's developmental specialist commented on my Super shirt, "Well, you must be Super Mom today!"

My reply was, 
"Nope. This is just my motivation."

If you look closely in the picture you can tell that I am laying down on my bed. Yep, here I am blogging in bed.

I'm not sick.

I just don't have any motivation to even sit at my computer today so I am lounging with my laptop trying to motivate myself to, at least, blog about my feelings so I can sort them out visually, find the positive and move on.

I get asked, more often than you might think, who of our 3 children with Fragile X are the highest functioning and whether or not Baby is any better off than Sister and Brother.

My response can vary depending on the day, but, usually I answer that it is Brother. Maybe because he just seems to go with the flow a lot of the time and just doesn't seem as overwhelming as Sister's Autism-like behavior.

When a child with special needs who is involved in an Early Intervention Program turns 3 they have the opportunity to move on to preschool through the district. Before that happens, though, they need to be assessed to see if they even qualify for this Special Preschool.

The past two days were Baby's opportunity to be assessed.

This is my third time going through this district assessment.

Different school district than the other two, but essentially, the same standard procedure of testing. Lots of questions, observing of behavior, watching them play with toys and how they play, labeling objects and pictures, throwing a ball, walking on a line, standing on one foot, puzzles, etc., just a myriad of different tasks that assess where they are in their ability and development.

For Brother his assessment was so foreign and unexpected. He was our first child, so everything was new. I remember just listening to all they had to say about his "global delay" and had no idea what anything they were saying really meant (we did NOT have the Fragile X diagnosis at the time). I just understood that he needed extra help. I remember them worrying about his autistic-like characteristics but, their biggest concerns were that he was so delayed in all areas. Really, it was all a blur. I can't even recall my feelings or reactions to the assessment or the first IEP meeting.

Sister was a different experience. She was delayed, but compensated in so many areas with her ability to understand and communicate through sign language. She, in fact, was doing so well at the time that the only reason she qualified for the district preschool was because she had a diagnosis of Fragile X. (Interesting to look back at that now seeing how much help she needs at this point in time. We went from having to utilize her diagnosis to get her to qualify to having her in a Specialized Autism Unit.)

Then there was my turn with Baby.

I really didn't think much of going to these assessments.

I had done it twice already and guess it just seemed "old hat" or "routine" so I didn't mentally or emotionally prepare for the outcome.

To make a long story short; after a lot of wrestling with Baby to even keep her in the examination rooms, a plethora of questions for me as the parent, numerous forms to fill out, and various tasks to be done by Baby I was finally sitting face to face with the "Bearer of News." (That is what I will call her because my mind is too jumbled to even remember what she really is.)

This, as I said before, was not the first time I had been through an assessment with one of my children, or as I told the "Bearer of News", "This isn't my first rodeo."

I can't remember everything she was telling me. She was delivering the news so tactfully and so thoughtfully, but all I could really focus on was that I needed to make a decision on Baby's classification so that they could put her in the right classroom setting for preschool, but I couldn't even get past the results she was telling me about Baby's testing results.


That was mostly what I could focus on.


Why would I worry about 1%?

It's the kind of milk I drink.

It's the amount of body fat I wish I had.

It's the amount of chances I hope to have my teeth pulled tomorrow at the dentist.

But when you are hoping that your child is anywhere near the 50% average of where all your child's peers are at this age, 1% is not what you want to see. Especially not in several areas.


That percentage wasn't listed in one area, but many.

My sweet little Baby is SIGNIFICANTLY delayed.

I knew it.

Marc knew it.

It's just really hard to see it on paper.

I am so overwhelmed by my life in general right now that having this knowledge on my plate is giving me the epitome of a waitress' nightmare. Complete and utter toppling of the plate being carried.

Or in short.

I think I am going to go crazy.

Three kids with FXS.

All with so much need and attention.

Since Baby's Developmental Specialist was here today she became my sounding board. She understands, not only because of her profession, but because she is a  mom of 2 children of her own with Special Needs. We were relating feelings and stories as Baby was breaking down because, I think, of her past two days of testing and expectations... oh, and lack of sleep for the past week (that may also be why I feel like I am going to go crazy).

Then towards the end of the visit Brother came home off the bus. I went to greet him and he immediately had a complete and total breakdown with included screaming, yelling, kicking and hitting that ended in me picking up my lanky 12-year-old and carrying him downstairs all while flailing just for the protection of Baby who was the innocent bystander of his meltdown (she did have his iPod, but, hey my sanity counts for something too). I still haven't found out what caused his meltdown. Maybe it was because today was his first field trip, maybe some one made fun of him, maybe he just was really that upset to come home an see that Baby had his iPod...

At any rate, I feel better now that I was able to write this all here on my blog.

Maybe someone will learn from it.

Maybe someone will feel better about their own kids after this.

Maybe someone else in the world will learn something new about Fragile X, or maybe someone will have read about Fragile X at all.

So, since, Baby is standing on my bed behind me, pulling me shirt collar, and jumping on my back calling my name "Rachael" begging for some sensory input for the, literally, 100th time today, I will get up from the computer, wearing my Super Shirt with pride knowing that it is not truth that I wear, but hope.

9 remarks:

Janice said...

Jaz is in the 2% for her language too. Same thing. I knew she was delayed, just different to have someone tell you.

Barbara Rozier said...

I can not find the words to say what I am feeling after reading today's post so I am am just sending you a hug and a smile :)

Faydra said...

What a day :-(

Numbers are numbers. She's still Baby.

Inspiring post.

Brittany said...

Sending you a huge hug over the Internet because you don't want one in person from me right now!

I'm sorry today was such a difficult day today. I'm sorry the results of Baby's tests aren't what you hoped! I can't even imagine what you are going through. As for your Superwoman shirt-you ARE Superwoman! I think you are AMAZING! Love you and your darling family!!

Anonymous said...

you really do inspire and encourage me! When I read your posts I realize I need to be a better mom. I love how much love pours into your words even when you're frustrated. I love ya, and wish you the best!

Dorinda said...

What a day! I can't say it gets easier, but it does get easier to deal with over the years. Hang in there Rachel, you're doing a brilliant job! (((((big hugs))))) xxx

Rachael said...

Thank you, Faydra :)

Rachael said...

Thanks, Dorinda and for the hugs too :)

Rachael said...

Your compliments are so wonderful to read. Miss you and hope I get to run into you someday.