The Journey – Sabrina
This is our journey into the spectrum of autism and the many faces it carries. I guess we should start at the very beginning.
My pregnancy was a difficult one and the day of his birth was predetermined and scheduled by my doctor as ultrasounds indicated that at 36 weeks he was already close to 10 lbs and my blood pressure continued to rise every week. Due to spinal issues of my own I could not have an epidural so I underwent anesthesia. The doctors worked as quickly as possible and when the Monkey took his first breath in this world, weighing in at 10 lbs 7oz, he was blue and groggy. The doctors think that it is possible that the anesthesia was the cause but coupled with that he had extremely low blood sugar levels and had to stay in the NICU for the first day. I understand that gestational diabetes can cause the increased weight and the low sugar but I did not have this during my pregnancy and the monkey continues to be much taller and muscular then most children his age. Regardless of the issues he had that first day he came home a healthy pink baby boy with chubby cheeks and a vigorous appetite.
After the first month, in my opinion, is when all the issues began. The monkey developed thrush and an eye infection. Thrush is common in infants that are delivered vaginally but not so common in an infant that was delivered via C-section. We treated the thrush with an anti-fungal medication prescribed by my doctor. It took 2 months for the thrush to fully leave his mouth. During this time he was also given and antibiotic cream to treat the eye infection that he had and here starts the rounds of antibiotics and where the issue lies. By the age of 18 months he had had 6 ear infections, 2 urinary tract infections, 2 instances of thrush and 2 eye infections. What is wrong with this picture? He was on anti-fungal medication twice and on antibiotics 8x. Between the infections he would then also receive his vaccines. When I look back on it now I feel like I did not educate myself enough and that although I knew all these chemicals must be doing more harm than good, I like many of us, listened to my doctor and followed her instructions.
At around 18 months I noticed that the words the Monkey had become fewer and fewer. I mentioned this to my doctor and she said if his speech did not improve by the time he was 2.5 we would re-evaluate. I knew something wasn’t right though and looking back on it I wish I had pushed a bit more for answers. The tough part here came with the fact that my husband had joined the military and in May of 2010 we were posted to Ontario and the monkey was celebrating his second birthday in a new province without a doctor. This is when our world went from fearing something might be wrong to knowing something was wrong.
At age 2 the Monkey stopped talking completely and the research began on my part to figuring out what was going on. This would be the first time I had ever really heard anything about Autism. Over the next year the following behaviors began and/or worsened: He started throwing extreme meltdowns over what to us seemed like the smallest things. He began to collect and line things up rather than play with them. He developed an extreme attachment to toy cars and needed those with him at all times. He disliked everyone but Gary and I so would scream and throw up whenever we tried to leave him with anyone else. He could watch an entire movie from start to finish and scream to watch it again (this is actually something he was doing at age 1 as well).He disliked going to the store and every time we went we were meet with massive meltdowns. Transitioning from one activity to the next was never easy and usually consisted of a good 30 – 90 minute screaming fit until he was too tired to scream anymore. When we would go to other people’s houses for play dates he would sit in the entry way screaming and crying for 30 minutes before walking into the actual house and then he would proceed to collect cars but never really play with the other children. This is when I wrote a letter to every doctor’s office with in a 2 hour drive from where we lived to see if I could get in to see them and although I had a hunch this was autism I still was not convinced that the Monkey had it but we were able to get into a doctor early 2011.
Then in March of 2011 there was a documentary on TV about Autism which Gary and I both sat down to watch. Since I had been reading up on it for the last several months I wanted to see what children with autism act like not just read about it. As we watched the documentary it became abundantly clear that our little boy was on the spectrum. He behaved exactly like the little boy in the documentary who covered his ears to noises, who toe walked, who lined up all his toys, who threw massive meltdowns during transitions. This little boy was exactly like the Monkey and this was our wake up call. I made an appointment to push our doctor into starting the process of getting him diagnosed.
Not too long after this I met with the lovely Jessica, who I can personally call a friend, whose husband worked with Gary. Their son was diagnosed with autism so I asked Gary to get her info so I can try to get a play date with her. My initial reasons were to see how her son behaves and also to see if she could see it in our son, because honestly I think I was still in denial and needed a bit more validation that I was on the right track. She was a godsend and helped me into the world of autism through all that she had learnt with her son. Through her I began to learn how visual schedules can dramatically help with the transitions and I learnt all the right questions to ask my doctor. I owe it to her for helping me believe that this was the right diagnosis and that things can be done about it.
With the information I got from Jessica I began to use daily visual schedules, we used pictures to help communicate with our son, I got him registered and into the Early Years Developmental Program that was offered in our community, and they helped get the Monkey into speech therapy. This was the start of life accepting that our son would be diagnosed with Autism once we waited received the appointment with CHEO. During this time I continued to read books and research on my own and threw another friend Dawn, that I could never thank enough, I learned a lot about ABA therapy.
I began turning my house into a 24/7 ABA session and it worked. The Monkey started talking again at 3.5 years of age. He began engaging more with others and we were able to transition into things a bit more easily now that we could understand why he screamed at certain things. Children with autism sense things differently than we do so when he could finally talk we discovered that he had an extreme sensitivity to temperature changes. This meant that every time we were giving him a bath he would always have a huge meltdown because to him the water was too hot. When we started to let him tell us when the water was good bath time became enjoyable so long as water never made it to his face. Once those words started pouring out of his mouth many of our questions for why were answered.
In my opinion diet played a big part in his dramatic change as we also switched him to a Gluten free diet and saw dramatic changes in his moods/ behaviours, his eczema on his legs disappeared and his infections were no longer. We also went from being Vegans to being meat eaters and found that this helped all of us all around. I know many others who have tried the GF/CF diet and have seen no change this merely shows how different and unique each of our children are however seeing as I think the root cause of the Monkeys delays may have been caused by a yeast overgrowth and over use of antibiotics it makes sense that the diet helped him.
This brings us to the diagnosis which took over a year to finally get. On June 6th 2012 at age 4 the Monkey was diagnosed with High Functioning Autism with extreme anxiety. Finally we had a diagnosis now to access therapy right? WRONG. We were put on another wait list. I couldn’t take it any longer I felt so defeated. Our child needs this early intervention and all the literature I had read specified that the earlier the intervention the better and yet here we are at age 4 just getting diagnosed. I was disgusted with the province of Ontario and their lack of services for these children and their families. I refused to wait another 2 years before I could obtain any services for my son. This is when my husband put in a request to get posted back to New Brunswick. It was not guaranteed but we were going to try to at least see if we could get services more quickly if we moved back to the province he was born in and luck would have it in September of 2012 my husband’s request had been approved and after selling our house we were back in NB by December of that year.
During the 6 months that proceeded the diagnosis the Monkey continued to make strides, although it was a bit slower now, as we continued to learn from each other. I used routine
strips for everything and that made life much easier. After moving back I contacted the Autism Intervention Center and we were in with them and starting therapy by April. April!!!Not 2 years just 4 months. I could be nothing more than happy. However life in a military household with a mother who also works makes things for the Monkey hard. All the changes that occurred with the move back has caused his anxiety to be so extreme that even his senior worker has no idea how to gear his programs in a way that will work best for him. He has now pulled away from most other children except for Rebecca’s daughter as you will learn through our posts they clearly were a match destined to be together. His vocabulary, although still behind, is amazing considering he has only truly been talking for less than 2 years and it continues to develop. His pre – academic skills are far ahead of a child his age but because his social skills have actually dropped and his anxieties have actually increased I fear that the ABA therapy he is getting through the center here just isn’t helping him with the things we actually need to teach him.
Now today I am on my own mission in trying the best way I know how to help him learn to cope with his anxieties and to help him understand that life cannot be 100% predetermined even though he thinks it can. We still deal with a host of meltdowns weekly but we have learnt for the most part that we are a strong family and we will stand by the Monkeys side and try to help him the best way we can.
***UPDATE: Over the last 3 months with help from his workers and some new programming the Monkey is making HUGE strides in recognizing when he is anxious and learning to vocalize his needs.