Yesterday morning I was cleaning out Allie’s backpack. I know, most mom’s are on the ball and clean out the backpack the night before to make sure there wasn’t homework. Me? I wait until 10 minutes before the bus comes. Innocently enough there was some St. Patrick’s paperwork. A piece of paper with a 4-leaf clover where Allie had to write four wishes.
1. To see Selena Gomez
2. For Boo to stop having special needs
3. To stop having bad teeth
4. I would love some nice horse books
Okay, wish #1 is probably out. I do not think Selena Gomez tours. But I will set a Ticketmaster alert! For wish #3 I know this is due to her having a pallet expander put in her mouth last week. It has not been fun. And I can totally grant wish #4 in her Easter Basket next week. But back to the wish that broke my heart. How do you explain to your child that their sister/brother will not be ‘cured’?
Allie seems to take Boo in stride, I thought. Out of everyone Allie seems to take Boo as she is, just her little sister. Of course I had to ask. First I asked what Allie meant by special needs. In Allie’s mind, special needs meant that Boo takes longer to learn stuff, things are harder for her and she has to spend so much time in therapy.
Why can’t she just be normal?
I explained to Allie that Boo cannot be ‘cured’ (I know, MOM–with exaggerated eye roll) but that she improves with every therapy appointment. That only a year ago Boo barely talked and now she has about 60 words and just started using 3-word sentences. That today she can jump, ask for a cracker and climb up and down the stairs.
But I have no life because of Boo!
Allie told me that if Boo wasn’t in so much therapy then maybe we could do girl scouts, gymnastics, play-dates. I didn’t want to shatter her innocence that it was my fault she wasn’t enrolled in any of that stuff. Team sports gives me nightmares. Have you seen Dance Moms? No way in hell am I going down that road. I will take 15 therapy appointments a week!
But this comment opened my eyes to what we are doing wrong with Allie. I thought that by having her attend Boo’s appointments she would have a better understanding and be able to work with Boo in a positive way. And she has, I have seen Allie tell Boo to use her words or how to make her use skills learned in OT. She can explain to her friends why Boo doesn’t understand or act like a typical 4YO. However, I did not realize that Allie is beginning to resent having to spend 2 hours a day after school at the therapy center. She wants to be home or with her friends or anywhere else. This is something, though, we can fix. We can have some one pick Allie up afterschool so she doesn’t have to attend every therapy appointment.
However, she is not going to be able to do team sports. I am not that accomodating!
I wish she was normal too
I told Allie that sometimes I wish Boo was normal, too. Think about how much simpler life would be if only Boo was a typical 4YO. If we didn’t have to worry so much, attend so many appointments (slight aside-think of how my paycheck would increase if I could actually work a full week!) and not have so many meltdowns. I completely get Allie wanting a normal baby sister that she could have typical relationship. Even if that meant hair pulling and screaming matches.
But wait, there are perks!
We started talking about some of the cool things Boo brings to us, just being who she is. By not being that typical 4YO, she isn’t in Allie’s room destroying her toys (or worse, playing with them). That Allie gets to do more things because Boo isn’t involved in activities (other than therapy–is that an activity?). That we have gotten to meet some really cool people and be involved in things like World Down Syndrome Day and the NSTAR Walk for Children’s Hospital.
Allie thought the biggest perk was being able to cut in line at Disney World. I kind of agreed.
I really wish that I hadn’t misplaced that parenting manual with all the answers to life’s questions.