Input from Moms of Autistic Spectrum Kids About Help Wanted from Extended Family

Hi there. I'm a mother of a beautiful 6-yr old boy who has classic non-verbal autism. Extended family were very helpful when Zack was a baby. They were willing to take him when day care was closed or for a week here and there over summer breaks. Now that he is older and bigger and stronger, they are far less willing to offer assistance. His grandparents no longer feel capable of handling him. They don't live close by, so if Zack spends any time with them, I must always be on hand to keep him safe and out of trouble. It's not like I can just drop him off for an hour here and there. Now I have to pay sitters experienced with autistic children if I need a break or if school is closed. My mother was the first one who really noticed that something was not quite right about Zack, and urged me to have him evaluated. When we finally did and he received his diagnosis at age 2, she was relieved that someone had found the reason for his behaviors, and we could finally roll our sleeves up and help Zack. Over time, as Zack still struggled and remained non-verbal, despite early intervention, my mom lost interest in her grandson. She no longer felt compelled to do grandmotherly things like pick him up clothes or toys, even if it wasn't his birthday. She no longer seems excited to see him, or to spend any time with him when we come to visit. In fact, she never asks about him anymore when she calls or emails, how he's doing in school, or when we're going to bring Zack around. She had detached herself emotionally from him, and I was very hurt. His other grandparents have acted very similarly, other than to cut out articles about autism and mail them to me. I get a lot of that, and it gets tiresome. I usually discard the articles. They rarely contain anything I don't already know. I just wish his extended family would care, would see past the autism and the fact that he doesn't talk and just see him for the delightful little boy he is. He has definite interests, likes and dislikes, and feelings too. The distance doesn't help, altho we are all within a few hours drive of each other, but they just no longer have any interest in getting to know him.

1 mom found this helpful

Personally my family & DH's family is constantly in denial and I wish they would stop telling me I need to read to him more, or that boys are slower, and he'll grow out of it. Maybe he will, and that is something I pray for, but I am not trying to force my child to be on the spectrum yet they treat me as if I do.

1 mom found this helpful

I am the Mom of a beautiful 2 1/2 year old austitic boy. He was diagnosed just 3 months ago. I think that the best help anyone can give to us right now is babysitting. I understand that you live far from your grandchild but if you could even just take your vacation time to go and stay with your grandchild so that your children can get away - even just overnight it would be a tremendous relief. It is so important for the parents to get together away from their children and recharge. I know that this is the help we value the most at this point.

A little about me:
I am a Mom of 3 boys, 5 years, 2 1/2 years, and 9 months. I am an engineering consultant and I work from home.

1 mom found this helpful

Dear L.,

This is not exactly an answer to your question but I've researched autism from a holistic standpoint for about 6 years now and found out some rather fascinating things that can reverse the condition in almost all cases.

It's not always just one thing needed but often a combination. If you'd like to call or email me, you can reach me through my website at www.ncdpro.com/detoxqueen. I suggest listening to the recording from the doctor (around half hour) first. This is one part of the equation. While this alone is effective for some children, others need more to fix things up. Diet is crucial for almost all of them.

Anyway, just an option from someone who likes to fix rather than cope with problems. My own daughter had mercury in the brain and this is one major reason I learned so much about autism since they have that problem in common.

Your family is lucky to have someone like you! Keep up the good work!

S. Hoehner

1 mom found this helpful

I work PT as a receptionist at a private speech-therapy office. We see many PDD and autistic children for individual speech-language therapy and also social skills groups are very popular. I've noticed that a few grandparents are paying for their grandchild's therapy (often not covered by health insurance) and I know that is a huge weight off the parents' shoulders. I know too for Christmas my mom (lives out-of-state) mailed my my husband & I $100 to have a night out and to tell you the truth, I've been using that money to pay a teenager in my neighborhood to come over so that I can have a break once in awhile.

1 mom found this helpful

Hi, L.:
Thanks so much for trying to help your little guy. When my son, now age 8, was finally evaluated and started getting his needed services, my in-laws also distanced themselves. When I shared the results of his evaluation, that my son was 2 deviations below the mean in 4 of 5 areas tested, I got blank stares and a change of subject.

They have since been very warm and welcoming, and they treat him much as they treat my other child. But initially, I could have used a lot more support. Even if they just listened to me, it would have helped. Looking back, I think they just didn't know what to say.

I am blessed that my Mom was very supportive. Her phone calls and e-mails were and are great. I am sure that sympathetic listening would be very appreciated.

Warm regards,
J. M.