Today a meeting was held in our kitchen with the professionals who determine if Jack's respite services will remain in tact as is. It's a bi-yearly review of his behaviors, regressions, needs and whatnot, and I dread it every time. The hours are integral to Jack's progress and my sanity, and as a desperate parent of a very disabled child I heavily rely on them, and thank God for them. I am happy to report things will stay the same, at least for now.
When Jack was a little bit younger, and interestingly less complicated, we were actually granted more hours. Two years ago our provider dropped another bomb that we would be decreased by eight precious hours per week due to increased demand and lack of funding, or so they said. It doesn't help our situation that I've obviously got our stuff together, both in the physical and on paper. Sometimes I think we look too organized and too together to qualify for funding, which is frustrating. Years back I requested an informal hearing and the decision to slash our services was reversed. This last time I was not as lucky and I have learned to appreciate the assistance we still have.
There was a time early on in this autism journey I actually refused respite help. "Go out with your husband," they said. "Leave the house and go to the mall for a few hours," they offered. But I politely refused, thinking I could do it all. Not to mention the tremendous guilt I felt at the thought of spending even less time with my son, who was already in therapy and away from me 30 hours per week.
Years have gone by, and I am older and the mother of three. Somewhere in the last 12 years I have become more fragile and less resilient than I had been back when I was fresh and gung-ho to make everything right. Oh, I was going to do it all! And come away from it looking fabulous to boot. People would say to me, "You look great!" and I felt wonderful, energetic, and ready with all the ammo to conquer this autism beast. I put up a great front on the outside that I had everything under control, when in reality, my heart was shattered in more places I ever knew existed. And so I smiled big for my husband and my parents, and walked with my head held high without ever realizing I had forgotten how to breathe and cry. It was a mistake.
It took a while for me to realize that people who are truly strong aren't afraid to ask for help, look vulnerable or cry to a friend. Giving up the control was like a grand piano weight being lifted off my shoulders, once I realized it was okay to need and to want more. And I am a better mother for it. Even if it means I am not Super Woman. That is okay...that is more than okay with me now...
May You Always Recognize The Blessings...
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