.Jackson is 3 and loves cars and building things. He is curious and loves to learn. He is stubborn and determined. He’s happy and creative. He is loving and affectionate and gives the best bear hugs.
Jackson’s was a normal, healthy pregnancy, born ten days early. He seemed to develop normally for the first year except for sitting a bit late. He walked at 13 months and was off running shortly after. He seemed to be a little bit picky about food but had a varied healthy diet. He was content and happy most of the time and we really didn’t have any serious concerns.
Around the time Jackson was 16 months old, at a well baby visit he was referred to a speech pathologist because he wasn’t really saying any words. As first-time parents we hadn’t realized he should have been. Around the same time, we as parents started noticing that he really liked lining up his cars, stacking them or loading up bigger vehicles with smaller ones and doing this over and over. As mom I thought it unusual how he would do this contentedly for 2 or more hours at a time, only occasionally stopping for attention. He also really liked to spin the wheels on everything up close to his face. Would also look at things up closely and study them. We wondered if it was a vision problem.
Some months later at his first appointment the speech pathologist noticed he didn’t make eye contact, or always respond to his name. She asked if we were alright with making a referral for screening for Autism and we eventually agreed after some hesitation. We couldn’t deny that something seemed to be different. She referred him for diagnostic testing, and we got the call for an appointment 11 months later.
At this point we still didn’t know very much about Autism. That quickly changed when Jackson started the testing and we did the interviews involved. Before anyone told us officially, we knew what his diagnosis would be. Jackson was diagnosed as having level 2 or moderate Autism, 3 weeks after his 3rd birthday.
Autism affects our family from the moment we wake up in the morning, starting with that first transition of leaving the bedroom.
Jackson is excited to start the day, but he needs his “t” and blanket to help him feel secure as he moves throughout our home. Nearly every transition is difficult for Jackson, filling him with anxiety. Some have gotten easier as he got a little older but really struggles still at times. Leaving to go to daycare is one as well as going outside to play at daycare. When its time for the group of children to go outside he does not want to stop what has doing, he kicks and squirms as the educators struggle to dress him all the while trying to reassure him. Sometimes he becomes so distressed he will drop to the floor and hit his own body. It is heartbreaking to see. Leaving to go to daycare is getting easier as I am using some of the strategies we’ve learned, but some days are still difficult.
We have a very difficult time with Jackson’s eating. Due to what we think is sensory issues, he mostly eats toast or bread with butter and then has a nutritional supplement drink. No matter how hard we try we just can not get him to try new foods or even ones he eaten before. We also supplement with vitamins, but his health is becoming a concern. At times I have at times been sick with worry over this.
Jackson also still receives regular speech therapy but has only recently started building sentences and answering simple questions. We are overjoyed at his progress but there has been a lot of tears and frustrations on everyone’s part along the way. So many times, we could only wish he could tell what he wanted or what was wrong so that we could soothe him. Many times, we wish he could tell us about his day. We even unfortunately worry that he can not tell us if anything is wrong or how things really are when he is in the care of others.
Around the time of Jackson’s diagnosis, we started a program entitled J.A.S.P.E.R., which stands for Joint Attention, Symbolic Play, Engagement, and Regulation. This intensive program helped Jackson to build on his play skills, such as turn taking and sharing, mixing different toys to create stories. His language has greatly increased in the months during and following. He is less resistant to and more regulated during some transitions. It has indirectly helped him to now join the group for activities and meals. Programs like this are essential to kids waiting for intensive therapy.
His peers seem to love Jackson but he still struggles in social situations because of his difficulty communicating, rigid thinking and emotional regulation. I watch him and can see the desire to interact sometimes but also can see that he just doesn’t understand how yet. He stills plays mostly on his own at daycare unless they are involved in a group activity. Jackson didn’t always join the group. He refused to come to story time or to lunch even. Through therapy and hard work he has started to make improvements and now joins for many activities and is less resistant to some of the transitions that are part of his day.
He still requires significant support at home and at daycare. Though he can put on most clothing items he lacks the focus to get dressed on his own. He also not yet toilet trained though we have been at it over a year and half. This may continue to be the case as he starts school in the fall.
We worry how he will fare in September when he starts kindergarten. His ability to be in a classroom setting is limited, his individual engagement time is limited. He still has regulation issues, especially during transitions.
These are just some aspects in which Autism affects our entire life.
All of this takes it’s emotional and physical toll on the whole family, some of their behaviours are heartbreaking to see. There are a lot of appointments and therapy, and it’s a lot to keep up with. aAs parents we both have mental and physical health conditions. We live in a more rural area, so the distance and the weather always effect things. We are a low-income family, and while we can meet our family’s needs, it isn’t always easy.
Jackson will need significant therapy and support to become a happy, well-adjusted adult. Jackson has made a lot of progress since his diagnosis, but we know that unfortunately he could also regress. It is impossible to predict with certainty what his needs will be as time goes by and he changes with different ages.
The therapy we have received has proven progress is possible, but we are also faced with many issues and behaviours that these therapies do not tackle. My partner and I are determined and willing to do whatever we have to, but we do count on what is made available through the Ontario Government.
We knew we would have a long wait for services, but there was comfort knowing Jackson would eventually get what he needs. However, with the changes to the program, Jackson, may receive services sooner, but it's unlikely to be enough.
$20,000 doesn’t work out to a lot of therapy hours, and for our family travel time and costs will eat into those hours. The recommended amount of therapy could cost up to $45000 or more. We are faced with trying to provide thousands of dollars worth of therapies.
When we first received Jackson’s, we were sad, and we worried, but we felt sure we could help him to still grow up to be happy and adjusted and that he would have many successes in life.
Now we really don’t know what to expect and that’s very scary. He along with every other child should be allowed to reach his full potential. With the changes to the OAP our family if frightened that we can not proved what he needs to do this. How much harder could life for him because of this?
Services should be based on the needs of each individual child, regardless of what their age or family income is. We HAVE to keep fighting for this.