The Emotional Weight of Autism

From the beautifully written blog Finding Cooper's Voice:

After almost seven years I’ve learned how to ask for help when I need it. I had too. I was drowning.  I’d been called a martyr one too many times. I’d been accused of doing it all by myself. And maybe that’s true. But in my defense, I truly believed I was the only person that could help my autistic son. I used to think that no one would ever truly take the time to understand him or decipher his needs. I thought that no one could handle his screams or hums. Or that no one would take on the burden of changing his diaper. His needs were so intense I figured it was just easier if I did it all myself. When Cooper turned six I had completely burnt myself out. I wasn’t sleeping. My back was so messed up from carrying his 65 pound body. I was anxious and irritable. I was always sick. I was drinking way too much caffeine during the day and one to many glasses of wine at night. (Read more.)

Many mothers must often leave their jobs in order to take care of special needs children, which can lead to poverty. From HuffPost:

 I’ve been asking my community of moms who have children with disabilities what they do about paid work. Many moms do work when their kids are young – this is when daycare spots for kids with disabilities are more plentiful – if they can get to the top of the long wait lists. Other moms have teenagers and have been forced to opt out of paid work. And some have flexible employers – although these types of employers are sadly the exception. Yet others piece together a freelancing life, picking up work here and there, like I do now.

Many families slowly inch their way towards poverty. We bleed money every month. Ironically we need a higher income even more than we did with any of our other kids. We pay for our son’s therapies out of pocket and we need to save for his adulthood because of the abysmal government rates of disability assistance that loom in his future.

“I left my job I had for 20 years when my son started high school, too,” one mom told me last week over coffee. When he was younger, they had cobbled together care with grandparents, but their son’s needs became more pronounced when he hit adolescence and the grandparents inevitably aged – the arrangement no longer worked. So the mom had to resign. (Read more.)