'I Have Become Sarah’s Voice'

Seeing your child in distress is extremely difficult for a parent. Caring for my 22 year old daughter Sarah, has meant often seeing her in pain.  I have seen some dark and dismal days.

Sarah can be engaging, great with her caregivers and she has a great sense of humour. My beautiful daughter also loves to swim, spending time outdoors for walks and listening to music but she also has difficult behaviours that are harmful and very worrisome.

Sarah is self-abusive, often hitting herself for prolonged periods or banging her head against the walls or floors.  This is in addition to her other nonverbal developmental delays that require specialized care. 

I have become Sarah’s voice, desperately seeking support.  It’s been hard physically as everything we do requires at least one pair of extra hands, so she doesn’t hurt herself.  That often meant appointments to the dentist or getting blood work done was not possible. I didn’t feel comfortable even just getting her into the car.

It has been even harder emotionally, not knowing where to go as the behaviours continued to escalate.

As the years went by, life just got smaller and smaller for both of us.  We were limited in the things we could do and I retreated into myself, feeling alone and isolated. 

After many years of going through the system and trying to find the right help for Sarah, we were referred to the Dual Diagnosis program at Ontario Shores.  For the first time we were able to get help beyond just managing her behaviors. 

As a result of further testing by a geneticist we had more answers about Sarah. At first, she was thought to be autistic, but now we know that Sarah may have an undetermined syndrome that explains her behaviours.

The support that both Sarah and I have received from Ontario Shores has made a significant difference to our lives.  When I look back, I remember how challenging it has been for the entire family.  Sarah has three older brothers who felt almost powerless to help her.

Now I feel better supported even though the future is still unsure. I am confident that Sarah will continue to get the help she needs.  Just having someone else see her behaviours and be able to offer another perspective has been helpful.

Now on medication, Sarah has reduced her harmful behaviours and I have a renewed sense of hope. I often felt so overwhelmed and exhausted but now I have answers and help.