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

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.

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.

I have a son that is "delayed" - he is three years old. When I started to realize his delay he was 2 - I had him evaluated and he is receiving services from the county. He gets speech three days a week and OT twice a week. The school he is in has integrated classes which is seeming to be very good for my son - he LIKES school now. He was previously in a school with kids 6 moths to a year younger than him and they were all more advanced then him and he literally stood in the corner the whole day becasue he couldn't relate to his class mates. He was evaluated via an "interview" with me and he scored borderline autistic and they are going to re-test him in a couple of months. I am still not sure what to think - some days I think he is just delayed and he will be fine and some days I think he has something worng. The waiting is killing me!! I just want to know if something is wrong. I have two older sisters both are handicapped and I really pray that he turns out to be ok. My parents and I have a level head about the situation since we know what life with a disabled child is ... my husband and his mom on the other hand are in denial that he is even delayed. It drives me nuts because it is obvious that he is far behind other kids his age. I worry that if something is wrong he is not going to get the same treatment from them as if he were normal. I rely on the social worker at his school to help me through the rough times and she does. My mom is also a huge help since she has walked the walk. We have become very close since the "issues" arose.

My advice to you as a grandparent is to embrace your own child and give them whatever support they need. Right now a lot of people in their lives may not accept them since their child is not "normal" and family is the best support that they can ask for. Don't be annoying about articles you read and things you hear about the disability but be supportive of your grandchild's needs and learn as much as you can to help him/her. Learn sign language and teach your grandchild signs and make sure you make them feel special.

Feel free to email me if you want to talk further.

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

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.

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.

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.

Check out our latest post on Autism Awareness, part of our special Child Advocacy Month! http://sproutreviews.com/2010/04/13/child-advocacy-part-ii/

We are looking forward to our very first guest post this Thursday when Joanna from "The Story of Parenting a Child with Autism" gives us a real life look at family life with Autism.