Our Challenges

Help the public and our Elected Officials understand the challenges of raising a child with autism. Each family affected by autism on Prince Edward Island has a different story with similar bonds.

Perhaps you are a parent, a grand parent, a family member, a community member or an individual who works in the autism field. We all have our challenges and this is your opportunity to share them and make a difference.

Please share your story of challenges and bring more public awareness to this disorder that now affects 1 in 100 children.

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2 responses to “Our Challenges

  1. On July 28 2008, my life was changed forever when a pediatrician informed us that our daughter had autism. Or so he thought anyway. He would refer us to the Autism Assessment team of Charlottetown where they would determine this for sure. But the wait list is 10-12 months long so just hang in there till then. Hang in there every single waking minute of the day and wonder if your child has autism for the next 10 – 12 months…..easier said than done.
    And this is where it all began. Constant fighting with the Government for some sort of help for our daughter, hoping and praying that maybe for a minute one of them could put themselves in my shoes and step up to the plate.
    Unfortunately this didn’t happen and to this day, I’m fighting for her .
    What are some challenges that come along with raising a “special needs” child. Well, from personal experience there’s been more hardship than any parent should have to go through. Not knowing what the future holds for your child is tough, not knowing if you’ll ever hear the words “I love you” is even tougher.
    Our daughter doesn’t sleep much so my husband and I are almost constantly on “auto pilot” because we are so sleep deprived. Time to ourselves is a thing of the past because most nights she’s not in bed before 11:00, and then who knows when she’ll be up through the night.
    She also has sensory issues which makes it almost impossible to go out because I have no idea how she’ll react once we get there.
    We’ve had her in private therapy for the past year and she’s making wonderful progress, but this too has come with a price. Because she is on another wait list for government funding we have had to pay for this on our own causing tremendous financial strain. It doesn’t seem fair and it’s hard not to be bitter. I find myself wondering to myself all the time….haven’t we been through enough, without having to wonder ..am I going to have to choose between my house and my daughter. Which obviously there wouldn’t be a choice. My daughter will always be my priority and I will fight for her until the fight is over.

  2. When our daughter was 15 months old, I noticed she wasn’t responding to her name. I voiced my concern to our family doctor, who suggested she was just ignoring me…

    When she was 2 yrs old, I noticed she wasn’t developing speech like her peers were, I was told to wait and see…. again by a clinician. When she was 2.5 yrs, I again voiced my concern and mentioned other concerning behaviours such as hand flapping, lack of eye contact, spinning in circles, self injurious behaviours such as slapping herself, hitting her head on the floor and biting. She would also run which posed a huge safety concern for us as she had no sense of danger.
    I was told, she was an only child, maybe she was spoiled…. she was just quirky…wait and see….

    When she was 3 yrs old, a WONDERFUL Public Health Nurse took the time to listen to my concerns, made notes, offered insight and wrote a referral for a Speech Assessment. She began seeing a speech therapist 6 months later (she was on a Priority list). The SLP who worked with our daughter ALSO noted RED FLAGS and made a referral to the Preschool Special Needs Team. After 2 yrs the wheels were FINALLY in motion ….

    Our daughter was assessed by the PSNT and it was determined that she should be assessed for an Autism Spectrum Disorder. She would wait ANOTHER year before being assessed by the Diagnostic Assessment Team.

    In December 2007 – 2 weeks before Christmas we were given the results of our daughter’s assessments. She was diagnosed as having an Autism Spectrum Disorder.

    In February of 2008, we began IBI through the Provincial Government. We hired our own “Tutors” and started a home based IBI program with the help of our Preschool Autism Specialist.

    I had planned on returning to work full time once our daughter was 3 yrs old. However given the fact that she struggled in areas of communication, had sensory issues, behavioural issues, we decided it was best that I stay home and continue to be the Primary Care Giver. This too has had an impact on our family financially ,however it is in the best interest of our child. We did have our daughter in Daycare part time however the daycare was not prepared nor equipped to work with OUR child and HER Special Needs.

    Today, our daughter is 6 yrs old, she is in Grade 1, she is a very happy and determined little girl. A little girl who will grow up to be a young woman and face even more challenges ahead. She is 6, however we find ourselves looking ahead in worry about how she will function when she is 20. She has Autism, she will always have Autism…

    I catch myself wondering what if she was dx’d when she was 18 months or 2 yrs old, what if she had 3 years of IBI instead of 18 months…. then I realize there is no future in the past… I look to tomorrow and focus on making the future brighter for our child and the thousands of children and families like ours… its time the Government does the same !

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