Advice for Parents of Children with Extreme Behaviours; from the mind of Grannie Lannie

I see the challenges that you are facing with your young children; especially the parents of children with extreme behaviours.  

I see you looking for answers and support on Facebook, in educational parenting groups, with local professional services, networking with other parents wherever you can.  

I understand the frustration of having to wait for services because of a lack of diagnosis; even though the behaviours are clear to see and all the research tells you that early intervention produces the best outcomes. 

I feel your distress at having restricted hours at school for your child because they are not equipped to support your child’s specific needs; even when this prevents you from working to support your family.

You see, I experienced this, at an earlier time; the fight to find help for my child with special needs.

I am the parent of a thirty year old autistic man; but he sure didn’t start out that way.  I would like to share a bit of our story.

I was employed as a childcare worker when my son was born.  

His development was average physically, however, my son was a non-speaker until he reached the age of 5.

Things were different back then, we didn’t have the technology for one thing.  

We still had to wait for a diagnosis; the process took us about 2 years but we were able to access some services through the school division in the meantime (special needs preschool).  

We had more funding in schools so he was able to attend without restriction. My son was in a separate class room for students with higher support needs, at first, then gradually increased his time in the main classroom.  We believe he did so much better when he was around students of all abilities as he would copy how they acted around each other; my son tends to be passive and watch others but he was very loud as a child, which was very disruptive at school.

Once we received the diagnosis, my son was able to attend programs at the Autism Resource Centre in Regina (it was serving the needs of younger children when we were involved with them).  Then a change happened which restricted our access to programs; due to our income we couldn’t attend anymore, the spots were being saved for children from low-income families only.  We moved to Moose Jaw and my son briefly attended some programs that we could pay for ourselves.

Comparing my journey to the realities of today, I had it fairly easy in some ways.  

I didn’t have access to the information that is available now so I had to spend time working on things with my son through trial and error.  We had some success and some failures; all you can do is learn from the lesson and grow with the new knowledge gained.  

I would read whatever I could find relating to autism so I could help my son.  I remember buying a couple of magazines for the articles that featured the PEERS program when it was first being studied at UCLA.  I attended information series hosted by the school division and went to presentations to learn how to raise my child living with special needs.

I had it much harder in some ways too.  

Information about neurodiversity was scarce and sometime totally wrong.  Autism was just starting to be acknowledged.  You see a kid having a melt-down now-a-days and the reaction of people is different than the reactions I used to get when my son would melt-down.  I was lucky that I had a career in childcare, I was equipped with the tools and patience to teach my son how to function.

What have I learned on this journey? 

I have a few take aways that you might want to consider when looking at your own situation.

1 a child (or anyone for that matter) that is experiencing extreme emotion is not receiving information.  That can include negative emotions and positive emotions so it’s best to wait for the person to settle down to a calmer state before expecting them to communicate effectively.  To help them find their calm faster, model what ‘calm’ is; take a deep breath, look away, allow time for them to settle down before speaking, use a quiet tone of voice.  Be their calm until they can make their own.

2 there is a reason for everything.  Just because we don’t know the reason does not mean that it isn’t valid.  Be open to the information coming your way; people don’t just do things, investigate!  We need to acknowledge where they are at, emotionally, and give them time to meet us at their pace.  Mood and attitude can influence the situation so we need to monitor our  method of communication to be clear.

3 autistic children grow up!  We can’t stop them so we need to prepare them for adulthood.  That means having expectations; do chores, learn how to buy things, how to get around the community, etc.  LIFE skills!  Sensory issues might be there; so how can we adapt to accommodate those issues?  Encourage children to try new things at a slower pace, but keep trying new things!  Don’t assume they can’t, assume they can until proven otherwise.  That means they will have to put in some practice before deciding it’s something they can’t do.

4 anxiety is one of the main stressors for autistic people.  Anxiety prevents autistic people from trying a lot of new things; even simple, non-threatening things.  We can help them overcome fear by talking about the situation in detail, what is overwhelming to them?  Can it be changed to something less scary? We must be careful not to downplay their feelings of anxiety, feelings are real even if we don’t feel the same way.  See point 2

5 an autistic child can have the same expectations regarding behaviour as everyone else;  doing chores, taking turns, using their manners, carrying their own school backpack, etc.  We need to actively teach them these skills, dedicate time and be consistent until the behaviour is learned.  Accepting autism as an excuse for poor behaviour can be very harmful to a child; they will struggle to be accepted by their peers as they get older.  This can also give others a skewed opinion of what autism is and what to expect from an autistic person.

6 People are people.  We all have the same basic needs; food, water, shelter, clothing and the need for each other.  Community is important and it’s important for people to know where they belong in relation to that community.  Research agrees that a child needs at least one friend during adolescents to maintain a positive self-image.

7 choice is essential at every age!  We can’t force people to accept us, no matter how much we want them to.  Children must also have a choice; who to play with, what to play with, when they want to play by themselves, etc..  We don’t connect with everyone, that’s just reality.  Forcing a relationship isn’t good for anyone; even if it makes sense on the surface.

8 Honestly, it has been my experience that the quickest way to a meltdown is by taking away choices.  Meltdowns happen when a person gets so overwhelmed they can’t function.  Some meltdowns are silent, like shutting down and not hearing anything around you.  Most meltdowns are typically loud and messy, no one would “choose” the meltdown if they felt there was another option.  It’s mentally exhausting and physically draining.  

At the end of the day, the best way to support your family is by modelling how to treat each other with open, honest communication.  It’s okay to make mistakes as long as we strive to correct them.  Life as an experience is better as a shared experience with people that accept us.

Grannie Lannie