This "special needs" life we're living (if you want to call it that) is such a roller coaster sometimes. For the past several months, Raya's preschool transition has been on my mind. Back in October 2010 when she was diagnosed with cerebral palsy, I felt so relieved because I thought that it meant she'd automatically transition to preschool. That turned out to not be the case and she does actually have to be evaluated to see if she is delayed enough and in enough areas to qualify for preschool. From that point on, when I think of Raya turning 3, all I can think of is whether or not she will lose her therapies and if she will qualify for preschool. Sometimes the idea of her losing her services feels like a kick to the stomach. I thought that once her preschool eval was scheduled I'd feel a little better but I don't. Now I get nervous just thinking about it.
There are days when I look at Raya interacting with her siblings, putting food in her mouth without eventually spitting it back out, taking drinks of water, and playing happily and I think to myself, "Why are we doing all of this? Why am I spending hours every week taking her to therapies and stressing over things when she's made so much progress and is doing fine?" Every time a clear, distinct word comes out of her mouth, she sits still for more than 5 seconds, or I see her do something she's never been able to do before, I worry that she's not going to qualify for preschool. In the same thought, I wonder to myself why we're even pursuing preschool & therapy if she's able to do those things. Then I remind myself how seldom her speech is clear and distinct, how rare it is for her to sit still for even 5 seconds, and I remember how much hard work it has taken to get her and keep her at an age-appropriate level on so many things. Raya is a perfect example of what the early intervention program is meant to accomplish. She entered the program when she was 5 months old and aside from the fact that she still doesn't eat much, she has done phenomenally well in the program. (because she was lucky enough to get into the program & then into long term care prior to all the budget cuts that changed the program, but that's beside the point...)
Really, it's a vicious thought cycle. It goes something like this:
Raya's having a good day, meaning she ate a little something for breakfast, cooperated with her therapist, had a nap, sang to herself and played in the crib until I got her out and unhooked her from the feeding pump, played with the big kids, sat with us and had a few bites of something for dinner, and kept the whining and throwing fits to a minimum. I start to think she'd be okay without preschool and maybe even without her therapies.
The next day, Raya wakes up crabby, whines and fights with the big kids all morning, climbs on the kitchen counters looking for gum and candy in the upper cupboards, climbs shelves in the pantry, climbs on the kitchen table, swings from the kitchen table, climbs on top of the toy shelves, has a 20 minute meltdown because I helped her buckle her seatbelt, insists on putting her shoes on the wrong feet, starts crying again because something reminds her that I helped her buckle her carseat 3 hours ago, doesn't seem to hear anything I'm saying, can't stop moving even for one second, refuses to eat anything except ice cubes, climbs on things and tries to jump off, doesn't fall asleep for her nap, becomes fixated on things that frustrate or upset her, has to be wrestled into and out of clothing and diapers (because she's nowhere NEAR ready to potty train), tries to prevent us from hooking up her tube feeds, and stirs in her sleep several times at night. On those days, I remember that there is a good possibility that based on certain factors, she may not qualify for preschool and the stress returns. On her "bad" days, I look at her and wonder how in the world she will ever be able to function in a classroom (and in life) if she doesn't continue to get therapies & preschool to help her make that transition. I know it sounds dramatic but the thought strikes fear into my heart.
I know it's hard for people around us who have seen Raya in different settings to understand what it is that makes her need therapy services and early intervention preschool. If I didn't live with her 24-7, I might wonder the same thing, and sometimes I do. You can't always see the problems at first. Most people would look at her and see that she's a busy toddler, but not realize that the busy-ness never stops with her. She is THAT busy almost 100% of the time that she's awake and unless she's strapped in to a highchair or carseat, she's on the move. Other people would see her run, jump or go up the stairs and assume that she's at normal, age-appropriate skill level for those things, but what you wouldn't notice is that with those activities, certain muscles fatigue quickly and she is unable and unwilling to sustain the activity as soon as it becomes difficult. You might hear her clearly pronounce 3 words in a row and assume that she says all of her words that way, but she doesn't. Her speech is very inconsistent and although some words are clear enough for people outside of our immediate family to understand, most of what she says is not. Often, her letter sounds are soft and muted and she doesn't always pronounce letter sounds the same from word to word or from one utterance of a word to the next. If you see her put her flip-flops on by herself, you wouldn't realize that the last time she's put them on, they were on the wrong feet and it took her 5 minutes to do it with 20 verbal cues to help her stay focused and finish putting them on and there was a tantrum when I tried to help her. She looks like a healthy, typical 2 year old unless you notice the G tube lump under her shirt. In many ways, she is very much a 2 year old, but what we see with her goes beyond what is typical for a child her age.
I know that a lot of the things I post are about challenges we have with her and more of the negative things and there are reasons for that, but here are some positive things about Raya. In spite of all her busy-ness and sassy spunk, she really is a sweet girl. She gives the best hugs (thanks to her beastly upper body strength) and kisses on the cheek. (paranoid germophobe Mommy doesn't allow lip kisses...) She tries to do everything she sees her big kids do, like saying prayers before she goes to bed. She insists on saying her prayers at nap time and bedtime. :) She kneels down (well, let's be honest, she "W" sits, which I know is bad, but I pick my battles) and MUST be sitting on one of her blankets while she says prayers. She puts all the toys she's carrying in between her knees, making sure that they are sitting (if possible) and tells them to fold their arms. She never closes her eyes and is usually squirming around the whole time. Most of what she says is very difficult to understand and has to do with whatever toys she's holding at the moment, but she also says things that surprise me sometimes. Almost every time she says her prayers, she says, "Bee-beh Willy ah Whit-na-nee" (Please bless Lily and Whitney, her two tubie BFFs) and that she's thankful for her Mommy. It just makes my heart happy that even though she may not really understand what she's doing, she insists on saying her prayers and she's praying for her sweet little friends who have far greater struggles with their health than she does.
She makes us laugh all the time too. She recently discovered the show Backyardigans on Netflix and is completely obsessed. Her favorite character is Tyrone, and for two weeks now she's been trekking everybody that her name is Tyrone. When I go to get her out of bed from her nap and she has a poopy diaper, I'll walk into the room and say, "Raya! What is that SMELL?!" She smiles back sweetly and says, "Iss me, Ty-wone!"
Well, I hadn't meant to get so long & rambly. The point is that for me at this point in Raya's life, one of the hardest things about being her mom is trying to balance my expectations of her and my own assessments of her abilities with those of the powers that be within the school district and state who more or less have her future in their hands. It's hard to want to push her too hard when we know we very well may be pushing her out of qualifying for the services that have gotten her to where she is right now. When the lady called me to schedule the evaluation, she said we would need to wait another 6 weeks before we do it so that we'd be closer to Raya's 3rd birthday and that made me cringe because I know Raya will be doing things 6 weeks from now that she's not doing right now. Ugh. I just need this step in the process to be over so I can stop stressing about it and move forward with whatever ends up happening.
(See what I mean? Roller coaster.)
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