How Autism Affects Families
by Pickel
Having a child will change your life but one day finding out that your child has special needs, or better yet, Autism, can be so life altering that families can either pull together or be ripped apart. <!--more-->Every family will eventually respond to an autism diagnosis in their own way.
Because caring for a child with autism takes time, energy, patience, resources, flexibility, finances, and most importantly, a sense of humor. A child with autism can bring out the best in family members; compassion, kindness, charity, self-sacrifice. But, it can also bring out heart ache, depression, frustration, grief, and guilt.
Therefore, families with children on the autism spectrum need outside help.
According to Nicole Cleary, the Board Chair for IDEAS, families need
1. Information about autism and the treatments that are effective.
2. Skilled respite care because all parents need a break.
3. Professional help organizing daily routines for children with autism and help teaching self-care skills in the home.
4. Effective strategies for dealing with difficult behaviors.
5. Help finding and accessing services and resources in the community.
Because AJ has never had a diagnosis of autism (but institutional autism) and because we got little Early Intervention help we are just now getting some help in these areas (although it is still very little). We have done much of this ourselves and have gotten most of our help through our fabulous Meetup group.
The best things we did for ourselves was move closer to family, get AJ involved in a special needs community program (which also has led us to his respite care, which we pay for), and join the Meetups group for special needs (the local mommy and me play groups had trouble accepting special needs kids of AJ's level).
How have you felt since your child's autism diagnosis and how does the diagnosis affect your family? What types of things do you wish you had access to that would help you better function?
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Melinda - on February 26, 2008
After I made the move back to be closer to family Noah improved tremendously!Chochem - on March 5, 2008
I think you're right on with all your points. We did the same for our son. Early intervention, moving closer to family, finding outside social activities to reinforce skill building - these have all been crucial. And, at the same time, we're still struggling with the lack of official resources and the inability of professionals - educators, insurers and doctors alike - to deal and fully comprehend this national epidemic. At the moment, this is very much a parents battle and that is what is most unfortunate.leana - on March 29, 2008
I wish my daughter had more help - she is so overloaded, being a working mom and keeping all the appointments the kids have is so hard on her. She would have all the help from family she could want if only she wanted to live in Utah - she doesn't and I don't blame her. I wouldn't live here if it weren't for the fact that most of my grandkids and kids are here. It would be great for her to find more friends and get established there since that is where she plans on staying. She loves to get out dancing and enjoying music and movies, bike riding etc., but there is only so much time and its mostly taken up with work and more work at home. I applaud her for how well she has done with the kids.