Family Counselling and Support Services of Guelph-Wellington - Dear Charlotte

Autism Spectrum Disorder

Dear Charlotte,

My son was recently diagnosed with an Autism Spectrum Disorder and I'm in the midst of learning about the services and supports available to him. I live in a small rural community which leaves me fairly isolated and alone to struggle with this new diagnosis. I know there must be other parents in a similar position, and I'm wondering how I might connect to these families for emotional support and guidance.

All alone in a small town

Dear Alone:

Thank you for your recent letter. I am glad to hear that you are in the midst of learning about Autism services that are available to you and your son. I hope you have liked with Access Information and Referral (AIR) for Developmental Services. They are the central access point and can assist in connecting you with other resources such as case management and Kerry's Place Autism Services. Their phone number is 1-877-216-1116 or you can view their website at www.airwellington.ca

With respect to your question about connecting with other families, there are a number of ways in which you could do this. One way would be to connect with the Autism Society of Ontario and see if they have a local chapter near you. Their number is 416-246-9592, or their website is www.autismontario.com . Another way would be to connect with Families for a Secure Future. They have established a network of local family groups across Ontario to support individuals and their families. The coodinator for the Guelph Wellington area is Joanna Goode and she can be reached at 519-833-8539 or by email at jgoode@sympatico.ca They also have a website at www.familiesforasecurefuture.com. If you choose to access case management through AIR, your case manager may be able to link you with other families in your area.

I hope this information will be helpful to you. Please remember that AIR is just a phone call away and they can answer any further questions you may have.

Charlotte

Dear Charlotte,

My daughter is having problems that are away beyond me but I want to help her. I do not know what to say to her. She and her husband have two kids. Susan is 10 years old and Dave is 13 years old. A month ago she had her third child, Wayne. The baby seems to have problems and the doctor says that he has Downs Syndrome. My daughter does not talk much about the baby and I am afraid to ask her the questions. I hope you can help me. I love my new grandchild but I am worried about him. Will he be able to look after himself when he is older? My daughter has enough trouble thinking about her own work and her other children. I wonder if looking after this child is too much for her. Can you help me?

Barbara

Dear Barbara

What a loving mother and grandmother you are. Of course you love your new grandchild. It is important to celebrate his birth. At the same time it is not uncommon that your daughter may be grieving the loss of the "normal" baby she was expecting. Your understanding and sensitivity to that loss will help your daughter a great deal. Your daughter might feel safe enough to talk to you about her concerns when you feel safe enough to talk from your heart about your concerns. You can help each other.

The first thing is to ensure that the diagnosis of Downs Syndrome is correct. The services of a good pediatrician are highly recommended. Because your daughter is not talking about this it may be helpful if you to do some of your own research. Ask your physician, consult your library, or contact a local support group such as Keeping Involved in Downs Syndrome. They will have many of the answers you are seeking.

Treat Wayne in the same manner you would your other grandchildren. Reassure your daughter and her husband that whatever limitations Wayne may have are not their fault. Many parents blame themselves for things that are beyond their control. There are many myths about Downs Syndrome. The truth is that this syndrome describes a wide range of abilities. Early intervention, such as provided by Infant Development Program can make a difference, but there will be lifelong limitations. Other programs can provide preschool resources, contract workers in the home, and even financial assistance for special needs expenses. Wayne’s abilities to look after himself in the future may be unknown at this time, and really depend upon what sort of supports will be available to him in the far future.

Remember, always strive to see Wayne as Wayne first, someone with special needs. A person’s disabilities never define the person. Wayne and his family are lucky to have such a grandmother. Good luck to all of you.

Read the rest of our 'Dear Charlotte' series on a variety of topics here:

Abuse

Counselling

Developmental Issues