“You punch me, I punch back. I do not believe it's good for ones self-respect to be a punching bag.” - Edward Koch I've been punched around quite bit in my life. (Haven't we all?) But since The Boy's diagnosis, those hits have always been the hardest to bounce back from. It's because those hits give me this sense of overwhelming failure. As if I haven't prepared enough for this moment - how can any expectant mother prepare for a special needs child?
I understand why mothers quit their jobs. It's all consuming. And it never ends. Because unless you are extremely well off financially, your child's services are at the mercy of someone else. And you always need to justify the need of service. For every bit of progress a child makes, the likelihood a service will be taken away. Appropriate becomes an ambiguous word.
So this afternoon, as I made another promising phone call that ended up being just a phone call, I felt like a Bozo the Clown. Punched, pounded, the air kicked out of me. Disappointed. But most of all, defeated.
I can't help but wonder - how many phone calls will it take? How many times can I hear: No, I'm so sorry; No, we can't help; No, try someone else. How many times can a mother expect to be put on a waiting list? And just wait.
I am physically tired. I am emotionally drained. I am special needs spent. I am hoping this moment will pass. Because I can't quit the job that pays me to devote every single waking second to my child. I will need to bounce back. I have more phone calls to make.
Lisa, I can tell you that the biggest life raft that I have found in my 4 years of being an autism mom (well, 6 if you count the years before I knew), is the support of other autism moms. I met one other mom in my sons' EI toddler group when they were just 2, and together we started an autism moms' support group because there just weren't any in our town. There still aren't except for ours, but it has grown to over 50 members and people find us online everyday and want to join, or find out how we started our group and duplicate our success. I can tell you, in this area if you say you are part of Westside Autism Moms (WAM!), the school districts know who you are, the medical community knows who you are, even the media knows. It is good to have that kind of clout. If you don't have an autism moms group in your area, I think you might find it very gratifying to start one. And even though it sounds like more work on your very full plate, it pays huge dividends. I've been where you are-- an online community is wonderful, but an in-the-flesh community is even more so. It's one of the few constants I have in Spectrumville, and makes everything else feel more manageable. I hope you can find an existing one in your part of NYC, just to save you the start-up labor. Good luck, my dear!
ReplyDeleteI hate being at the mercy of NYC just becuase I don't have $$$. I know that we want our children to progress but I am scared to see what is going to happen next for Alex. His has improved so much and I can see it now...it's going to feel like the rug is going to pulled from under us come June. The battle for summer has already begin and I can't sue for a better education for K because his evals have proven that NYCDOE have done their jobs.
ReplyDeleteWhere's my clown nose?