Letter | Autism PDD

Hi ford, After you send your letters you might want to pass around a book about autism. I got a book from the library and gave it to the family member most likley to get it or interested in it, from there she passed it to other members of the family. Most of them now realized my son has special problems. The book also gave them some ideas on how to handle my son differently in social situtations. I believe education is the key. Good Luck

I truly belive that it takes a village to raise a child. One of the things that I find the most heartbreaking when I read various posts on this board is how many folks out there are going it alone and have little, if any, family support. I was very open with my family since day one with C and everyone has been supportive. It was something I took for granted until I joined this board. I hope that you get positive and supportive reactions from you family.

Hi. I thought I read somewhere about writing a letter to family about Autism. Now that Billy is officially Dx, I was thinking about writing a letter to my family to help them "get it"...with my family, I think that no matter what they read...if they read it....they still won't get it (its my parenting

I did this myself after Jason got his dx in May. If you want, I can post the email here, if I can find the copy in my outbox...

For those who don't know, Jason was just diagnosed with classic autism. Obviously, this means some big changes for us, and some of you may have some questions -I know we have lots! So, I have put together this email that has some tips and some links that you may find useful or informative.

I want to thank everyone for their love and support, and in advance for your understanding. This will be a difficult thing for us, and dealing with Jason might be a bit challenging for some time. But I know that with love and support from all of us, he will grow and thrive!

Love,

"Evie"

Feel free to email or call me if you have questions or concerns!

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What is autism?

http://en.wikipedia.org/wiki/Autism

Autism Society of America

http://www.autism-society.org/site/PageServer

10 Things Every Child With Autism Wishes You Knew

http://www.kidspeace.org/healingMagazine/NEWHealing/healing_ fw05_7.html

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Just as the parents and siblings must make adjustments when a child is diagnosed with Autism/PDD, also affected are friends, grandparents, aunts, uncles and cousins. I've seen very little written about this adjustment but I know in our case, it profoundly changed our relationship with our extended family members. My husband and I consider that we have a very good and close relationship with both of our families although it has gone through many changes (as has all of aspects of our life.)

I'd like to offer some tips for extended family and friends who want to help parents of a child recently diagnosed with Autism/PDD. (Most of the tips apply beyond the period following the diagnosis.) As I've previously stated, every family (including extended family members) is unique and makes these adjustments in their own way.

When parents get a diagnosis of Autism/PDD, they grieve, often very intensely and feel very isolated. Probably, no one else in the family has a PDD child and they often feel quite alone. (Unless, your family has other members, already diagnosed with Autism/PDD) the diagnosis may also be a mystery to extended family and friends.

Here are some "Do's and Don'ts" (Don'ts are first, followed by the Do's.)

DON'T (as my mom did initially with the best of intentions) tell them you understand what they are going through because you don't.

DON'T tell them either "that everything will be all right." (Yes, they probably will adjust in time but they know their lives will never again be the same.)

DON'T tell them "God must have chosen you to have this special child" if you don't know their religious beliefs. It is disrespectful and rude. Even if you share the same religious beliefs, please remember it takes time for the parent to accommodate the news of their child's disability into their beliefs and different parents view God's role in their child's disability differently.

DON'T question the diagnosis. (Your notion of Autism/PDD may be based on old, outdated ideas.) On the receiving end, this feels as if you are dismissing their grief.

DON'T let your discomfort lead to you to make comments such as "I could never deal with this".. "Wouldn't you have rather had a child with Down Syndrome?"...(yes, these comments were said to me). Try to remember that parents of recently diagnosed children with Autism/PDD may be quite sensitive to hearing bragging about your child's accomplishments or complaints about "normal" childhood behaviours (like a child nagging you when their child is nonverbal.) Remember our feelings are easily bruised at this stage and these comments make us feel that we and our child "don't fit in" and no one understands. NEVER joke to a parent of a nonverbal child that you wish your own child would "just shut up" or couldn't talk. It is cruel. My son has never ever said "Mama" and I would love to hear that.

DON'T take it personally if they seem distant after their child is diagnosed. They are probably dealing with a lot of strong conflicting emotions that they may feel you don't understand. For some parents, one of these emotions is difficulty being around "regular" kids because it reminds them of the child and family that they have just "lost". Mixed with this feeling is envy and guilt (I felt this way). It is normal during the initial
grieving process but will gradually fade.

DON'T tell them "you're so strong" or ask "how do you do it? ". We are human like everyone else, sometimes it can be very difficult and we have
no idea how we do it.

	DO let them know that you care about all of them and you want to help. (This is the most important thing.)
	DO ask them if there's anything you can do. If they aren't comfortable with a certain type of help, accept that and don't push it.
	DO ask if you can babysit (if you are comfortable doing so.) Some families will be pleased with this offer and accept. Other families won't be comfortable having you baby-sit, especially if the child has aggressive behaviours. If they aren't comfortable having you baby-sit their child, do not take it personally.)
	DO allow yourself to grieve too. Your grandchild/nephew's/niece's Autism/PDD will mean changes in the relationship with you. Even if the child is very able, the relationship will be different than it would have been otherwise.
	DO ask about the child with Autism/PDD. If there is a sibling, try not to give the appearance that you favour that child over the child with Autism/PDD. It will take more work to establish a relationship with the autistic/PDD child (because it will be different than with other children) but grandparents, aunts, uncles etc. are important for ALL children.
	DO remain patient if the child has unusual, strange, aggressive or tantruming behaviours. These behaviours are also very difficult for us parents to cope with. Under NO circumstances, suggest that the parent(s) are somehow negligently responsible for these behaviours! If the parents seem defensive in this area, it is probably because we are often stared at and criticized when our children's behaviour differs from what is expected.)
	DO be flexible about family traditions and gatherings. Some children with Autism/PDD have very limited attentions spans and find a different house with many people talking very overwhelming. Perhaps, smaller and more informal family gatherings would be easier for that child. (One of the most thoughtful things both sets of parents have done for us is bring us precooked Thanksgiving dinners - with Graham, I don't have the energy for that type of cooking.)
	DO let the parents know that there are many, many other parents with children with Autism/PDD who've experienced the same thing. They can be reached through local Autism Society or FEAT chapter or over Internet. If they aren't able to take this step yet, please don't push.
	Above all, let them know that you care and you want to help. It is OK to say that you're not sure what to do (neither are they!) but this caring and listening will help you establish a new, strong relationship with them. Your relationship with the child and his/her parents will change, but it can be a strong one. Evie39259.7990972222The 10 things book is awsomeOne of the best things I've seen was an article written (later expanded into a book) that was called "10 things Every child with Autism wishes you knew" (Ellen Notbohm is the author). Because it's written like it's the child saying it to you it hits home even more. I made sure my family read it and it helped to bridge the understanding a little more. Thanks all so much!!! I may not have family support, but I cannot tell you how much it has helped me to have the support of all of you. Thank you. Evie, great info...thank you so much. Kath You're welcome, Kathy! I know I have been extremely fortunate in the support I've gotten from my family. There are still some moments, but it just comes from misunderstandings, and everyone has been very patient and understanding of Jason, and I like to think this email helped. Everyone has been super-nice, and haven't hesitated to ask questions (that I know of!). In fact, I encourage them! I know lots of folks here, including you, Kathy, are having a rough time with their families, so I am glad that you all have us! Even with having such a great family, it's really nice to be able to come here and talk to people who have experienced what we are going through, and understand the special education process. I have learned so much by coming here ! Also, to give credit where credit is due, I got a couple of the things listed in my email from the "Newbies" thread right here on this board! It's been a valuable resource for me, going through the dx process and evaluations with the school district. I guess it's paid off, because I've had all kinds of folks involved with this tell me how "proactive" and "informed" I am with this, and it's all due to the great folks on this board! OK, now I'm getting all mushy, so I'll just shut up now. Copyright Autism-PDD.net