As a parent and professional in this field, I am often asked about our journey thus far, Jayden’s regression leading to his diagnosis of ASD and our thoughts on therapy options, school programs and placements, diet changes & biomedical treatment, amongst many other topics.
In writing my next few blogs, I would like to share our journey with you. I know for many, there will be similarities & opinions that may arise regarding some of the topics I write about. The truth is, we do not choose this life, it chooses us. Sometimes it is amazing. Sometimes it is scary. Sometimes you feel on top of the world. Sometimes you feel like you don’t know what to do next. It is important to know that there is no right or wrong way on this voyage. Each of you should choose what fits best for your family and child. Just because you are parenting one way or choosing certain therapy options over others, does not make the next person wrong for not doing the same.
My hope with this series of blogs is that those families just starting out can see that although their journey may be different, they aren’t alone, even though I fully understand how hard it is to feel like anyone else in the world is going through what you’re going through. I was one of those parents. I remember what I felt like…alone, scared, angry, sad…Alone because I felt like no one understood what was happening and what we were going through. Scared because I had no idea where to begin in getting the help Jayden would need, possibly for the rest of his life and ours. Angry because I couldn’t understand how something like this could happen when I had a healthy pregnancy and I never did anything that I wasn’t supposed to do and Jayden had developed typically and out of nowhere, we were robbed of that. Sad for the hopes and dreams I had on what my life would be like when I became a Mother and all of the hopes and dreams I had for my child.
Bear with me, as I begin Part 1 of a series of blogs about a day in the life with my sweet, handsome boy…
Jayden is a handsome, happy, fun and loving 11 year old boy. He loves music, swimming, surfing, being read to, riding horses, his iPad, being outdoors and spending time with his family and friends. He developed typically and met all of his developmental milestones up to the ages of 15-18 months old. Jayden began sleeping through the night at 5 weeks old and was such an amazing baby! Jayden had language; Mama, Dadda, Baba, No, Go etc. He was able to imitate finger plays to songs like patty cake, twinkle, twinkle little star and play peek-a-boo. He played with his toys appropriately. He waved good bye, blew kisses, clapped and shook his head yes and no. He fed himself finger foods and could eat with a spoon. He had an enormous appetite and would eat just about anything! When Jayden’s name was called, he’d come and see what you wanted. He was a very happy baby. He smiled all the time. He was connected to the world.
Between the ages of 15-18 months, Jayden’s father and I began to notice that Jayden was losing some of his skills. In this time, he lost all of his words. He no longer imitated, waved good bye, blew kisses, clapped or shook his head yes and no. He wouldn’t respond to his name and he lost all eye contact. He now preferred to spin toys close to his eyes and stare into toys that lit up, rather than playing with them functionally. He started to become a picky eater. Jayden started to flap his hands and walk on his toes. He also started to get chronic ear infections and colds. Jayden became very disconnected from the world around him. He seemed sad or sick more than he seemed happy.
I scheduled an appointment with Jayden’s Pediatrician immediately, as we knew something was very wrong. Initially, based off of parent report, Jayden scored very low on the M-Chat Questionnaire (Modified Checklist for Autism in Toddlers). From this point, Jayden’s Pediatrician referred us to see a Developmental Pediatrician. The waiting list was 12 months to get an evaluation! We were beside ourselves…What could we possibly do for an entire year without any insight to what was happening to our boy?
We had to miss many family gatherings or had to leave after a short period of time because Jayden would cry and be so upset. We couldn’t take him to the store, zoo’s, parks, or anywhere else for that matter. He didn’t mind visiting family at their homes, as these places were comfortable and predictable for him. This was so upsetting to his father and I, as our families are extremely tight knit and get together often, especially during the summer months and holidays. Although it would have been easier for all of us to just stay home, we still took Jayden to expose him to different environments, even if we had to leave within the first 10 minutes, hoping that in the long run, this would help Jayden feel less upset and anxious about going places.
In the meantime, I contacted our local Early Intervention Agency to have Jayden evaluated to qualify for home services until we could get him in to see the Developmental Pediatrician. Jayden’s Pediatrician also wrote a letter suggesting, in his opinion, Jayden was at high risk for Autism Spectrum Disorders and should begin ABA (Applied Behavior Analysis) therapy, in conjunction with his Early Intervention services, as soon as possible. Luckily, the ABA agency we chose to work with Jayden, accepted the letter from Jayden’s Pediatrician. Typically, you must have an Autism diagnosis to receive ABA services. There weren’t as many options for ABA therapy during that time as there are now and the criteria to receive services was pretty strict with the agencies as well as getting insurance approval. Because of the letter, Jayden was able to begin ABA therapy 6 months sooner than he would have, with the help of his Pediatrician.
While waiting for Jayden’s appointment to see the Developmental Pediatrician, I contacted the office and asked if we could be placed on a cancellation list, in hopes that Jayden’s appointment would come up sooner than the 12 month wait we were initially given. At this point, Jayden had been receiving Speech, Occupational, Physical, Aquatic, ABA & Hippo therapies in and outside of our home. The next step from here, while waiting to see the Developmental Pediatrician, was to have Jayden’s hearing tested to be sure that hearing loss was not a contributing factor to what was going on with him.
Jayden’s first hearing evaluation was a disaster. He was scared and anxious and did not participate. A second appointment was scheduled to try again. Once his second appointment rolled around, Jayden again, did not participate. After these appointments, the Audiologist determined that Jayden suffered from significant hearing loss. She suggested that Jayden was deaf. I immediately called Jayden’s Pediatrician and requested a referral for a second opinion. Neither Matt nor I, felt that Jayden’s hearing anything to do with what was going on.
After doing some research, I requested that Jayden have a sedated ABR (Auditory Brainstem Response) done, which is a hearing test done while sedated. The process works by attaching electrodes to the scalp and placing ear buds in the ears. The sound waves sent through the ear buds, at different amplitudes, are then picked up by the brain and determine whether or not the brain is responding to what it is hearing. At the end of the testing, the Audiologist came out and said, “You’re boy does NOT have any hearing loss! In fact, he had fluid in his ears (due to him just getting over an ear infection) and his brain was able to pick up the lowest sounds sent through the ear buds!” We were so happy to have pushed for the second opinion and get this news! The results were sent over to Jayden’s Pediatrician. We continued with all of Jayden’s therapy while we waited for the appointment with the Developmental Pediatrician.
To address Jayden’s toe walking, he was referred to see an Orthopedist. Although the Orthopedist was certain that Jayden’s toe walking was related to sensory issues, he suggested a trial of AFO braces to insert in shoes to help keep his feet flat and keep him off of his toes. We put AFO’s on Jayden for 6 months, everyday. Jayden refused to walk with them in his shoes and would crawl or drag himself around the house. He eventually began getting very upset every time he saw a pair of shoes and resisted wearing shoes. This clearly became very difficult as Jayden was now 2 years old and needed to wear shoes to walk outside. After 6 months, we revisited Ortho and explained what a struggle the AFO’s had been. The next step from here was to have Jayden serial casted, which would be a noninvasive procedure that could help correct Jayden’s toe walking.
Jayden was fitted for casts on both legs, from the knee down. He had to wear these for 4 weeks. 4 weeks had come and gone and I took Jayden to have his casts removed. He walked around at the Ortho’s office for a bit and was not going up on his toes. We left with a follow up appointment for 6 months out and were told to call with any issues before then.
Upon arriving home, within 20 minutes, Jayden had made his way back up on his toes. He was shaky and his ankles seemed a weak but, he was on his toes. I immediately called his Ortho and explained what had happened. He gave me 2 options…Jayden could be brought back in and re-casted right away or we could wait it out and continue with his stretching so at least his heel cords wouldn’t get any tighter. Because the Ortho believed it was due to sensory issues, it wouldn’t make sense at that time, to try Botox injections or a heel cord lengthening surgery with Jayden but, he did tell me that these would be things to keep in mind for the future, if he continued to be tight or worse, if his heel cords locked up. This was a difficult decision for Matt & I to make so we waited and put Jayden on waiting lists for Physical Therapy and Aquatic Physical Therapy, once his Early Intervention services would come to an end. We also had a stretching routine that they did with him every day.
To be continued…