I need your input

As the mother of a child on the autistic spectrum, I've often wondered how everyone else does it. Does every family with a child on the spectrum, or with any other special needs, get frustrated? Find moments of joy in the smallest of triumphs? Feel the need to just break down and cry, if for nothing more than a moment of allowing yourself to be vulnerable? Feel the need to escape every once in a while? Do anyone else's ears perk up, even in the most crowded locale at the sound of someone else talking about their child, with the same issues as yours - from clear across the room? How about moments of guilt, anger, sadness: at yourself, others, teachers, school districts, strangers, family members, those who just don't get it, government for not helping out more? How do YOU balance the myriad of places, finances, jobs, therapists, that are necessary (the time)?

What about faith? Does that play a part in how you get through? How about humor? What about the rest of your family?

What do you do to relax & release?

How many times have you sat at the various therapies, IEPs, interventions, doctor visits, and looked at the other parents there and wondered what exactly it is that they do to keep it together? That is exactly how these questions came to me: as my husband and I sat in the lobby waiting for our son, SmallBoy, as he worked with his OT. I see parents all day at my job - some have kids with severe learning disabilities, autism, ADHD. I see parents at our son's behavioral therapist and occupational therapist and I wonder: "Hmmm - what is it that THEY do? I know they could tell me volumes about their child and educate me inside out on their child's disabilities/issues, but what do THEY do?"

There are so many stories of what our children are like, how delightful they are and the joy the bring to our lives. There are happy stories and some that are so sad, others that bring hope in the wake of tragedy. I am researching how we, the parents and family members, of these precious angels, get through day to day. I am focused on US. My hope is to write an article about us that will, perhaps, help other parents like us and, ultimately, to help educate those who have just heard the words, "Your child has ______________."

If you are interested in sharing your story with me, please email me at [email protected], and use "How WE do it," in your subject line. No need to send me your whole story right away, I'd love to converse with you prior.

I was waiting to see if others responded but looks like no one has. Sorry that you haven't gotten any feedback (at least that I can see, hopefully you received some emails). I am not a parent of a child with a disability but have been working with families of children with disabilities for awhile. I was also a special education teacher for 6 years prior to staying home. My only advice would be to use respite and community recreation facilities when you can and if you can afford it. I think parents utilized these services so that they could get some time to themselves, which will help in many ways. I am not sure where you live but in the north shore area they had NSSRA which is a special recreation program and was after school. It was a great program for kids and allowed them to practice more skills and to socialize with others. And if you still need to find the answers to your quetions you could look into a support group with other parents with children with disabilities. My old cooperative had an association of parents. Also, if your son is school aged, ask for help from the teachers. I made many materials for my parents to use at home to help with skills or to encourage independent work (so parents could at least get dinner made)!! I don't know if this helps but I thought I could share a bit.

I have a child that has been very slow to be diagnosesd with Aspergers Syndrome. I am single & work full time & I try to bring her joy every day. It is very draining and frustrating. All a parent wants is for there child to be healthy & happy. My child is neither. She is 9 in the CPS and can design a computer program, video game & has a valuable idea on how to cure sickle cell but can barely dress herself. The anguish she goes through breaks my heart every day. Her father is realizing he too has some level of Aspergers and has lived with it his whole life. I try to be grateful for what I have but it is hard to sometimes...