Author: autismlighterside

Its’ that time of year.  Kids are almost finished school and getting ready for summer activities.  For some of them, that includes camp.

If you have a child with autism, it could look different for you.  Although you dream of your child going to camp and having fun with their peers, it’s not always possible.

First of all, you have to find a camp that your child shows interest in.  That’s not as big of a hurdle as actually being able to afford the camp.  Let me explain.

One year, both of our kids attended the Toronto Zoo camp.  The fee for each child for the week was $250.00, which was manageable.  But our son was not able to be there without support, so we sent one of his therapists with him.  Her fee (which was just her regular hourly wage) ended up being close to $1,000.00 for the week.  Well that’s the only camp we could afford that summer.

I was looking at an outdoor day camp this year.  Our son would love it.  There are lots of outdoor activities, like swimming and different kinds of boating.  The two-week price was a bit of a stretch at just over $1,200.00.  But then to add a support worker on top of that was an additional $900.00.  That put it way out of reach for us.

For parents trying to keep some sense of a schedule accompanied by fun while engaging their child, is not always possible.

The fees of things like camp are so high.  So you are left to figure things out on your own, which is what I usually do.

Our church this year has implemented an addition to their current half-day camp by adding  full support for kids on the autism spectrum.  The kids are directly integrated with typically developing peers, which is fantastic!  We have worked closely with our church to bring this about since we are members and it is truly an amazing thing to be a part of from the beginning.

We as a community need to help families.  Because it’s not only the cost of a camp for kids with autism.  The average family with a child on the spectrum spends at least $1,000.00 per month on other things such as supplements, different therapies, tutors and other dietary requirements for their child.

This is going to be part of my personal mission going forward — to help families.  Right now, I don’t know how this will be achieved, but I am going to work towards ways to make this happen.

Camps, whether they are day or overnight, run by the city or not, need to be open, provide the proper support and be affordable for everyone.

This summer I decide to take a step back.  My son is 13 years old now and I felt it was time (long overdue) for him to start figuring things out for himself.  For years we have catered to his every need all the time all day long.  I had to ask myself why?  Because he has autism is the only answer I could come up with.

I started to think that this is not helping him at all.  He’s always been pretty self-sufficient.  He can get dressed, clean his room, organize his belongings.  But what happens when something is broken?  What happens when he is hungry?  What happens when he is not paying attention?

So I decided to put it to the test.  My goal was to let him problem solve one thing a day, if the opportunity presented itself, which it usually did.

When we were up at our cottage and he wanted to go swimming, I was on the dock.  Normally, I would go up with him and help him find his bathing suit, remind him to get his towel and then come down to the lake.  Well, I decided to send him up alone and see what happened.  Pleasantly, to my surprise, he did just great.  He found his suit, got dressed and brought his towel down with him.  He left his clothes in a mess, but that’s a totally teenager thing to do anyway (lucky I have another teenager to compare him to).

I realized that I can’t be so controlling that I can’t let him figure things out by himself.  Of course, don’t all kids do that anyway?  So for the rest of the summer, I tried my best to let him work on this skill every time he wanted to swim.  By the end of the summer, he was a pro!

I was unaware of all the things I was doing for him until I took a step back.

Another thing, I let him do was to find his clothes and get dressed.  He always gets dressed on his own, but usually I lay out his clothes for him.  By doing this, he had to figure out what he wanted to wear and where to find it.  Since we were between home and the cottage, it was good as the clothes were in different locations.  One time he put pants on and it was 35 degrees outside, but at least he did it and I didn’t say a word.  This one is a little harder for school.  He wears a uniform which is easy, but he is not a morning person, so we will have to see how it goes.  At least on weekends, he can continue to do this and feel confident.

I think these are some basic lessons for me as a parent to recognize.  It’s not about being perfect, just about being aware of all the things he can do on his own and helping him achieve success in these areas.  This builds his confidence and prepares him for bigger things.

If you are a parent of a child on the spectrum, you do the same kind of comparisons as other parents, but on somewhat of a different level.  Let me explain.  We all want our kids to grow and develop.  We want them to learn new skills, develop meaningful relationships, succeed at school — all of these things and more.  As an autism parent, perhaps just sleeping through the night?

Whatever it is you want for your child, although it may be different, it is still wanting more for them and striving to help them reach the next level in their development.

I know that if you have a child with ASD, it’s easy to want to see “big” changes — especially if you are doing lots of things to help your child.  As a family, we do lots of different things to help our son.  These include biomedical treatment, ABA therapy, structured social group, nutrition, extra curricular activities (swimming, martial arts, scouts, hockey), ABM movement lessons.  We do all of this to enhance his life.  Do we expect to see changes?  You bet!  Do we see changes? Yes  Do we see changes that blow our mind?  I would have to say No.

But do we see small steady changes?  Yes we do.  All the time.

As people, we always want everything to happen quickly.  That’s just human nature.

But the important thing to remember is that small steady changes are amazing!  We need to recognize these and get excited about them.  Change is growth and growth is fantastic!  We should celebrate growth every time it happens.

You’ve heard the phrase “slow and steady wins the race”?  This couldn’t be more true for a child with autism.

Life, I have discovered, is a marathon and if you cross the finish line too quickly, you will miss the important small stuff — the small steady changes that happen gradually.

Our son attended a church camp in the summer that started a program for integrating kids and teens who on on the autism spectrum.  It was perfect because it was for half a day (which works well for him as social can often be very demanding and draining for kids on the spectrum) and they offered professional support.

This camp offered a very unique experience.  Normally camps like this cut off at age 11 or 12.  But what happens when they are a little order but still enjoy some of these activities?  I asked myself this very question!

It can be an awkward age where the kids or teens are caught in the middle.

For our son, this program worked great.  He was able to take on a partial leadership role as well as participate — the best of both worlds.  I saw growth and development at this camp and it made me aware that he is very independent.  I don’t need to do everything for him all the time and as a parent, I need to be aware of this so that I can foster his independence.

With support, his leadership skills and participation in this area developed substantially and it makes me realize that we need to keep on this path so that he can gain more self-confidence and solve his own problems on a daily basis because he has the ability to do this.

I think for all parents (and particularly those who have children with different needs) we tend to jump in, instead of standing back.

This week at camp was a great experience for our son as well as for me as a parent.  Going forward, I want him to be more independent and I know he can do it with a little guidance at the beginning.

I am so very proud of our son.  He truly is an amazing person who surprises me every day!

Every year when we go up to our cottage, we have a great time.  Our son loves it so much.  In fact, he hates to come home.  That part is very hard for him.

In past years things have been hard when we have had to come home for any amount of time during the summer months.

We have found that calendars with days marked off (showing him when we are at home and when we will be coming back up) makes a huge difference.  This way he can visualize and be prepared for it.

Things have progressively improved over the last couple of years.

A few years back, I had a calendar as well as a couple of new items to try to distract his mind from thinking about leaving when he was in the car.  He is a very passionate person.  He never wants to leave.  He would live up there if he could.  That’s how much he loves it.  I used to plan never to hurry when we had to leave.  This way I could give him time to process it and be okay with it before we got into the car to drive home.  Usually when I told him we were going home, there would be resistance, anger and sometimes tears.

One time he threw a temper tantrum so bad for such a long time before we had to leave. He was crying and screaming.

It has slowly improved.  Usually I promise him a really fun activity when we arrive home and I give him some choices so that he has something to look forward to.

Today, however, I was so impressed with him.  I packed all the stuff in the car ahead of telling him that we are leaving so that everything is all ready when it is time to go.  I had the calendar with the days marked off that we would be home and the day that we would return to the cottage.  I didn’t even have to promise a fun activity or give him a new item (both of which I was prepared to do).

I just talked to him and told him we were going home for camp and that we would be back up in a week.  I showed him the number of days on the calendar so that he could visually see it.  And that was it.  Voila!!  Calm and relaxed for the entire drive.

I was almost waiting for some resistance or something to happen, but it never did.

I am so grateful for these moments.

I am so happy that we have arrived at this point.  It makes me believe that anything and everything is possible.