Tuesday, 23 July 2019
featured Healthcare Inclusion

Please help us, all of us! An open letter to Minister Randy Delorey

Minister Randy Delorey,

Today I write an open letter for all to see. Rachel and I are proud Nova Scotians, happily married for 14 years, loving parents, but we are also suffering.

We are literally at a crisis point in our lives. We have two boys 12 and 7 (Sam and Alex). Sam is Autistic and has reached a severe boiling point and we are basically in the wind on our own in dealing with this.

I speak not only for us but for any other family with a child on the spectrum because I can guarantee you we’re not the only ones in this kind of situation. Sam is now hitting puberty and has become a completely changed person. Who was once loving, giggly and a generally well rounded special needs child has become, sad, unpredictable, angry and can be quite violent.

He’s becoming unmanageable at times for his school, leading to phone calls asking us to pick him up because he is so beside himself with rage or anger. While not an overly frequent occurrence yet, it will get worse and is going to become a problem in regards to maintaining a steady place of employment for one of us.

At home he attacks his mother nearly daily leaving actual bleeding wounds and bruises at time. These attacks come unprovoked and with zero notice which makes them very difficult to counter. His brother is scared at times to be around him and has to escape to his friends houses for periods of quiet.

Accompanying these attacks are literal rage-outs that can last from 30 minutes to 4 hours. These incidents include screaming, throwing of objects, slamming doors (hard enough to break walls and knock things off walls) stripping down all clothing, intense tears, tipping of furniture and scratches on himself.

We have access to the Autism division in Halifax including pediatrics, psychiatry and even a positive behavioural support specialist. The department called us a day ago after some messages and requests were left and they told us there is nothing else they can try or do. No new medications or ideas.

The plans we have been attempting to curb these incidents have gone nowhere. The IWK Children’s hospital has basically said your child can’t be helped. THE CHILDREN’S HOSPITAL.

I have chosen to put this in your lap. You are the minister of Health. Something has to be done for my family and many others who silently suffer daily with little to zero help with these situations.

Families like ours can’t always afford to have a parent stay at home to wait for the call to come get him or simply stay at home daily with them when school no longer wants him. Families become over stressed, overworked and even split over these issues.

Although my faith in the system is extremely low I hope you least read this and will consider looking into this. These kids are basically forgotten or abandoned when they reach pre-teen/teen years and that just can’t keep going. Please help us, all of us.

Mark and Rachel Lavallee, concerned run down parents at the end of our rope.

See also: Sister-to-sister: An open letter to Minister Kelly Regan

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9 Comments

  1. Mark and Rachel. My heart goes out to you. As a retired teacher I have seen similar situations where home and school are out of options. We need help. There has to be residential respite for families in your situation. You need to be able to regain your strength to carry on

    Reply
  2. There are a lack of services and plans for children with autism. While the Lavallee family is in a serious situation, there are many more families in a similar condition. The province needs a strategy for children and families with autism. Many children are only accommodated at school for a few hours a day because more supports are needed. My son was in this situation, he is better supported now, but at one point was only going to school for 3 hours a week. I quit my job two years ago because there was no other way to accommodate.

    When the thousands of children in the province reach adulthood, and they have no parents to care for them, but need a version of assisted living, where will they go? Then there will be a real crisis. The province needs to look at situations like how the Lavallee family is living as an opportunity to develop the services they need to have in place.

    There are not necessarily more people with autism, but now people know to diagnose it. Numbers of children diagnosed go up every year. They have a recognized health condition and need to be accommodated in society in an equitable way.

    Reply
  3. Our hearts go out to you. We get it. We live with severe autism and worry about this every day. Our son is 7, non-verbal, very very minimal self care skills (feeding, toileting) and is developmentally at par with a toddler. He can be aggressive now but he’s little. What will we do when he’s a pre-teen and becomes larger and increasingly violent? We are broken, exhausted and often wonder how we’ll make it through another day mentally yet we get no support. We don’t qualify because our income is too high, yet we can’t afford respite. We are house prisoners with no ability to do anything outside our home except thankfully (we are grateful that we can still work) go to work. The only way to get help seems to be to threaten to give up care of our children. This province NEEDS to step up and align itself with programs and care set up in other provinces. We are literally the worst equipped province in Canada to deal with these situations. It’s shameful and heartbreaking.

    Reply
  4. I am going through the same thin with my 15 year old autistic child with the same results and bruises on my body….than
    ks for writing this

    Reply
  5. We went through the same thing with our autistic, suicidal, violent, and schizophrenic son. Just after he turned that “magical” age of 16, when he was no longer a child but not yet an adult outside our responsibility, he became too dangerous to us and himself to keep him at home. After our second trip to the youth mental unit (an RCMP officer took our son and we, with our bruises and contusions, followed), family members who had recently seen 2 mothers killed in similar situations, urged us to refuse to allow him to be returned home. Even though we were still very much involved in our son’s care, we were considered to have “abandoned” our child. Gee, that really helped OUR mental health! It took 2 years, in and out of school, temporary group homes, and more hospital long stays, before our son found a stable “respite home” for a few years. For the past few years he has been in a small and wonderful training facility for young adults. Not sure what comes next, but we are immensely grateful for all the people who have gone way beyond their job descriptions, and used every bit of wiggle room the system allowed, to help our son find some stability, mentalĺy and physically. We have done our best to support other struggling parents with their own battles, but there are no clear paths to follow with our ailing Health Care & Social systems, where the workers are stretched too far and have a high burnout rate.

    Reply
  6. Original writer here. Anyone from the comments please message me if you would like to take part in a quasi documentary. I’m going to gather as many special needs parents that I can. We will all be sharing thoughts about each individual situation and the road blocks and frustrations you’ve had. Please message me privately on Facebook if this interests you or you know someone who may be interested.
    On Facebook I’m easy I find. Mark A. Lavallee

    Reply

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