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Autism and It’s Impact On One Family- An Interview with Sue

Autism and It’s Impact on  Family

When my oldest son was 18 months old he had a very violent reaction to his MMR vaccination. This is when I first heard the word autism.  I had no idea what autism was but was concerned enough to listen to the person who told me about it. She believed there was a link between bad vaccination reactions and autism.  Seventeen years later and the jury is still out on that one.  Thank God my son was lucky and he is neuro-typical today but from what happened to him I began to be very interested in autism and its cause and effect and in turn started a career in nutrition. I had the pleasure of working with many families affected by autism helping them navigate the gluten free/dairy free (GF/DF) diet. Parents of autistic kids are truly amazing people and I generally stand in awe of them at what they go through day to day. -Tammie

Sue and Her Family

Sue and Her Family

One amazing mom and her journey is the subject of this blog post- An Interview with Sue Taylor 

The Annual walk for autism events coming to up and I wanted to take a closer look at what autism means to one family dealing with it every day.  Meet Sue Taylor and her boys Ryland and Michael both boys have autism and Sue is very involved with her local autism Ontario chapter.

AS (Allergic Solution):  Sue how has autism affected you?

Sue: Autism has affected me in more ways than I can ever imagine. I have learned that you always have to expect the unexpected. You live like you are walking on eggshells a lot of time as you do not really know what might cause the next meltdown. You have to be a very patient person but also very creative in how you deal with situations as the way you respond is so important. You run on very little sleep as sleep is an issue for quite a few autistic children so you learn to function in spite of being dead on your feet.

AS: What does it mean to you to participate in the Autism walk?

Sue:  Planning and participating in the walk is an amazing feeling. Words cannot describe the way that I feel when I have an ASD (Autism Spectrum Disorder) parent say to me “I cannot thank you enough for doing this as it means so much to my family”. To raise the awareness and to see the children’s and families faces when they are at this day that is honour of them is so fulfilling. If we can inform one more person what ASD is about then we have succeeded.

AS: Are you doing any dietary interventions for your kids?

Sue:  My boys are allergic to eggs, nuts, seafood and dairy so they are avoided. We also limit the wheat intake but right now they are both waiting for biopsies for Celiac so wheat has to be in their systems.

AS: Do you feel those interventions have helped?

Sue:.  Yes we do feel these have made a difference, especially the wheat. We notice with my youngest son almost immediate changes in his behaviour and his inability to cope with issues he normally can deal with fairly easily. The meltdowns are more frequent, he can’t think clearly and is easily set off.

AS: What is the one thing you want others to understand about Autism?

Sue:  One thing I would like others to understand is that Autism is a very broad spectrum. It truly does come in many colours. There are verbal, non-verbal, some are social some are not, some flap their arms, some like to hum. There is such a difference in each and everyone. I have heard a few times “well he doesn’t look like he has Autism” Now I say  “What should it look like?” “Come to my house after school and you will see his Autism.”

AS: Do you ever go through : “why me”?

Sue: I go through the why me more than I am willing to admit. I struggled with infertility, miscarriages and high risk pregnancies for a lot of years. So when I had my boys they had issues right from the beginning. But, when I see them struggle with the smallest tasks like getting socks on cause there is a string or a bump. Or curling up in a ball screaming because someone made a loud unexpected sound,  it is hard to watch. When you see them so angry they hurt themselves you ask yourself “why me”. Why did this happen to me, why did I bring them in to this world when they have to struggle so much with everyday life? Even though you didn’t know it would be like this, you never want to see your child suffer and struggle.

AS: What do you hope for your kids?

Sue:  My hopes for my boys are that they can be accepted into the world for who they are. Autistic children are extremely smart and Autism is on the rise so the world should prepare as I believe we have a lot of Einstein’s out there.

AS: Do you think there will be a day when Autism will be a thing of the past?

Sue: I don’t think there will be a day that Autism will be a thing of the past but I do believe they will find out how to deal with it better. Proper therapies, earlier interventions and dietary changes right from infancy will go a long way to help. For myself,  I still question vaccines as both my boys reacted quite seriously and we also noticed changes in behaviour with each. Hopefully one day we will have a definite answer about that issue.

AS: What is the hardest part of having children with Autism?

Sue: Oh wow, if I have to name the hardest part of having Autistic children it is not having  a magic cure. There are so many days when I see them struggle,  I wish I could just wiggle my nose and it would all be gone. I would have neuro-typical children that would play at the beach, go to birthday parties, sleep on their own all night long, have friends, etc.  I guess to sum it up I would give them the opportunity to do what the average child does. It is a day to day challenge that we face that affects all of us in the family in so many ways. But, they are my boys, I love them to death and will except them for who they are and that will always be enough for me.