If you missed Part 1, you can check it out here: https://wordpress.com/read/blogs/63769527/posts/561#comment-142
In August of 2008, I received a phone call, from the Developmental Pedi’s office, 6 months earlier than the initial wait list time I was given, with a cancellation appointment! I jumped at the opportunity to get Jayden in to be evaluated. Upon arrival, the Developmental Pediatrician, a Psychologist, Nutritionist, Speech & Occupational Therapist, began their testing and looked to Jayden’s father & I, for parent reports on his development. They scheduled an appointment for 2 weeks later, to go over the evaluations. At this point Jayden was now 2 years and 4 months old. We received the news that based off of the teams evaluations, Jayden had been diagnosed with Mild to Moderate Autism, Global Developmental Delays along with a Feeding Disorder.
The Developmental Pediatrician then ordered that Jayden have an MRI of his brain to determine whether or not he had any brain abnormalities or any signs of damaged scar tissue that would indicate a lack of oxygen to the brain from when Jayden was born, as the umbilical cord had been wrapped around his neck. She also suggested that Jayden have some blood work done for genetics, to see if Jayden’s autism diagnosis could be genetic. All results came back normal.
Now that Jayden had been officially diagnosed, I was able to get him on waiting lists for outpatient Speech, Occupational, Physical and Feeding Therapy. Once Jayden would turn 3 years old, his services with Early Intervention and ABA would end and he would have to transition in our Public Schools Special Education Department and begin receiving services through the school department. I hoped that Jayden would come up on the waiting lists for outpatient therapies by that time so he could receive outpatient services in addition to his school services.
Shortly after Jayden’s 3rd birthday, he was evaluated by the school department and qualified for an IEP (Individualized Education Plan) and had transitioned into the school department. He was granted a placement in a substantially separate, full time, Pre-K classroom, for children with special needs. Jayden began receiving Speech, Occupational Therapy and Adaptive Physical Education, in addition to academics, social, self help & care in his school setting. Shortly after this time, Jayden was picked up for outpatient services in addition to his school services.
Jayden was not initially granted Physical Therapy in his school setting, because they determined that he could safely navigate his school. He was also denied ABA services because the school department did not offer this service. Once Jayden turned 3 years old, his state insurance was not responsible for covering the cost of ABA therapy. If we chose to continue ABA therapy at home, we would have to pay out of pocket, which would have been upwards to $50.00 an hour. I reconvened the team to request Physical Therapy be added to his school services, due to his toe walking and tight heel cords. Jayden’s Orthopedist suggested that Jayden receive this service as well, to work on stretching and increasing his range of motion and dorsiflexion, which hopefully would help Jayden to avoid complications in the future. I also, again, requested ABA therapy. Physical Therapy was added to Jayden’s service grid but ABA was not.
For the next 3 years, Jayden remained in this same Pre-K setting, including an extended year where he would attend school for 5 weeks in the summer. Although the classroom staff was nothing less than amazing, I had to fight tooth and nail for what Jayden needed, service and staff wise. We decided to retain Jayden for an additional year in his Pre-K setting, instead of moving him on to Kindergarten. He had made many gains in what was supposed to be his last year in Pre-K and the Kindergarten placement that had been proposed for Jayden to move on to, was not able to appropriately accommodate Jayden’s needs. With the progress that he had made, we did not see the point in moving him on to Kindergarten, where not only could his needs not be met but, with fear that Jayden would regress in the skills he had learned. The School Department agreed to retain Jayden in his Pre-K Program based off of our concerns and observations of the proposed Kindergarten placement.
During this time, we maintained his hectic therapy schedule outside of school, which at this point consisted of, Speech, Occupational, Physical, Aquatic, Feeding, Music, ABA & Hippo Therapies as well as working to maintain a household and cover the additional costs and co-payments for therapy that wasn’t being covered by insurance.
An outside ABA agency had come in to the school department to provide trainings to staff and Jayden was one of the first children who received the “ABA Methodologies” in his class. Although they were brief consultations, it was a start. They were able to arrange for Jayden to have ABA discrete trials run throughout the day in his class as well as parent consultations, where I would go into school bi-weekly to carry over and help Jayden generalize these skills at home. Eventually, we were running programs at home in conjunction with school programs and collecting necessary data, which would be reviewed bi-weekly at school, to help show that Jayden did in fact, benefit from this type of therapy. I reconvened the team multiple times throughout the years to have his IEP amended to request service times be increased and additional services be added to his service grid, additional staff be added to his classroom, an assistive technology evaluation to be done (to determine whether Jayden could be successful using a device to communicate), requests for independent evaluations and to update goals and objectives.
During Jayden’s 2nd year in Pre-K, the ARICA bill was passed which would require health insurers in the state to cover the diagnosis and treatment of autism spectrum disorders for individuals. Unfortunately, the state insurance was exempt from this bill. However, there was an opportunity for families to “buy into” a private insurance, with the opportunity to be reimbursed for the monthly health insurance premium. This was an opportunity for Jayden to receive ABA therapy at home, covered by his private insurance, with the exception of the cost for co-payments, as the state insurance was not required to pick up co-pays for this service. This helped us secure the home based ABA therapy for Jayden again only having to cover the co-payments versus the hourly rate for the therapy, which wasn’t affordable. If Jayden had received 10 hours a week of ABA without being covered by insurance, this would have run us roughly $500.00 a week, which clearly is insane! I jumped on the opportunity to enroll Jayden in the private insurance. Even if we didn’t qualify for reimbursement of Jayden’s monthly insurance premiums, the cost of the insurance would still be less monthly, then having to pay for ABA out of pocket. Luckily, we qualified and Jayden began receiving ABA at home again. We were excited for Jayden, as he had done well in the past with this type of therapy.
At this same time, between the ages of 2 ½ -4, Jayden was no longer sleeping through the night. He had not had any issues with sleep disturbances or sleeping through the night, unless he was not feeling well, since 5 weeks old. It was absolutely terrible…for all of us! Jayden would go to bed and wake up each night as if he had just laid down for a nap and not going to bed for the night. He would cry for hours on end, kick his legs and was just completely inconsolable, no matter what we tried. We ended up having to break the lease from the apartment we had lived in because the woman, who lived downstairs, would continuously call the police for disturbing the peace. Each time the officers arrived, they felt awful about having to respond to the call and recognized that there was nothing we could do about it. They suggested we keep records of all the complaints that were made on Jayden, to help us break our lease and move from the apartment. We began taking Jayden for rides at 2-3AM to help him fall back to sleep and to avoid having the police come to the door! It was completely exhausting, to say the very least.
Jayden was eating 3 foods at this point; crackers, applesauce and oatmeal. We were worried about how picky and limited his diet had become. He began vomiting and gagging at the sight of food and swiping entire plates of food off of the table. It got to the point where in order for Jayden to eat, he had to be fed before us or he would not eat his food. We went to see a nutritionist who agreed that Jayden wasn’t getting the nutrients he needed but, he was maintaining a healthy weight for his age. She had suggested that Jayden begin to have 3 cans of Pediasure each day. During this same time, Jayden would not move his bowels for 4-5 days at a time. I was certain that constipation was playing a major role in his sleep disturbances as well as the excessive crying and kicking of his legs at night.
From here, we made our way to see a Gastroenterologist. Jayden first had blood drawn to test for food allergies. A KUB (X-ray of the kidney’s, ureter and bladder) had been done. The results from the KUB showed that Jayden was significantly impacted, so much so that you could barely see any clear spots of his stomach. G.I. suggested a “flush out” protocol, to rid Jayden of all the stool that had backed up. Once this flush out had been completed, it was suggested that Jayden be sedated so they could perform an Upper GI Endoscopy. Once Jayden was scoped, they clipped lining of his stomach for additional allergy testing. Everything was clear and the endoscopy did not show any internal issues. All allergy testing came back normal. I was grateful and relieved that Jayden didn’t have anything internally wrong but I was also discouraged that they didn’t have an answer as to why Jayden was no longer eating a wide variety of foods and what had been contributing to his extreme constipation.
Jayden had also suffered from chronic ear infections. It seemed he had an ear infection every month! Jayden was referred to an Ear, Nose & Throat Specialist. A Caloric Stimulation test was done to determine whether or not there was damage to Jayden’s acoustic nerve (the nerve that is involved in hearing and balance and also checks for damage to the brainstem). A Tympanometry test had also been done (to determine any problems within the middle ear). Both tests came back normal and showed no damage in his ears. The ENT suggested Jayden go on a low dose of antibiotics as a preventative. A conversation was had about the possibility of Jayden in the future, needing surgery to have tubes put in his ears. With the history of ear infections, if this had continued, this would be an option. I was not thrilled at the fact of Jayden needing to be on antibiotics daily. I questioned what would happen if he really needed antibiotics and his body had built immunity to them but, I was desperate for Jayden to get some relief and hoped this would help and prevent surgery in the future. The ENT ensured me that this was safe and a good preventative option.
To be continued…