The First Diagnosis: Carter's Story

The story of Carter's autism - the beginning and now: Please refer all ** marks to Disclosure statement at the bottom of my post, also feel free to visit my Disclosure Page page on the bar on the right hand side of my blog. Links may be included in this post. Summary: This post is the story of how Carter was diagnosed with autism, all the trial and error to get where we are now, and how far we have came. This post is special to me and I hope you enjoy reading it as much as I enjoyed writing it 😃 To skip to the autism related topic: this is usually where I include the heading for the autism coaching subject included in my post; however, as this post is centered around Carter's autism, the whole post pertains to autism. The diagnosis Carter was diagnosed with autism at 2 1/2 years old; that is very early for a diagnosis, and as time went on I was not sure in the first couple years if that was accurate. A few years down the road, I realized this diagnosis was correct, hand flapping and all. At the time, I was working with a parenting coach as Carter's behaviors had spiraled out of control and I had a hard time understanding why. The daycare could not handle his behaviors, and my mother took on the role of his babysitter while I was at work.  This was while I was pregnant with my second kiddo, Maddex. Shortly after the baby was born, I was very overwhelmed; Carter acted hyper all the time, running around yelling in gibberish-type language and I had a hard time grasping what he was trying to say. This then lead to the meltdowns and destructive behaviors I am sure most of you autism parents are aware of. Going to the grocery store or running errands became such a power struggle I could not bring Carter with me. My mother again watched him while I was out and about getting what I needed to done. Thank you mom for all you have done to help me through this, from the babysitting, to the meltdowns, and all in between. I could not be more grateful to have your support and love throughout this journey. I am truly blessed. There is a local agency in town for autism diagnosis and in-home therapy for children on the spectrum. The parenting coach I worked with recommended I bring Carter in for an assessment. This assessment was three hours long, and afterwards, both of us were completely exhausted. A few weeks later I received a packet in the mail with the diagnosis: Autism:PDD-NOS. Here is the definition from **Google: "A pervasive developmental disorder not otherwise specified (PDD-NOS) is one of the four autism spectrum disorders (ASD) and also one of the five disorders classified as a pervasive developmental disorder (PDD). ... Even though PDD-NOS is considered milder than typical autism, this is not always true." Source: here. I have included the source of this definition as this is directly quoted from the site and is not my work, just to be clear.  After reading through the whole packet, the scores for each section, I cried. I cried for a good while, thinking to myself, "How do I even handle this? He is my first child, what is normal? How can I tell the difference between a meltdown and just a child disobeying his mother? What do I do now?". I felt lost, unsure how this would all play out in a few years when he would start school. "Would this ever change? Is it going to get better?" I thought to myself. And, that it did, in time.  Therapy, IEP's, and medications The autism agency that assessed and diagnosed Carter was able to provide in-home ABA therapy for him from 2 1/2 to 5 years old. Carter attended preschool without any issues, I was lucky his teacher could accommodate to his needs without an IEP. I also had him enrolled in an in-home speech program. This greatly helped with his communication. I was not a fan of this ABA therapy, once Carter turned 5 years old, I cancelled the sessions all together. At this time, the speech therapy also ended, as it was a program for only certain age groups which he had outgrown. After preschool, as I had moved to a different area of town, he needed to attend a different school. This is when the first IEP came about.  All day Kindergarten was a far stretch from a few hours of the preschool environment; this was also a special education class of only six kiddos. He needed a cold lunch packed as he did not take well to the menu the school had for the kiddos. His food aversions became so bad, he ate only a few foods, and that didn't change for a few years. Every day I packed him a peanut butter sandwich and juice box. I also sent along two changes of clothes as he was still in pull-ups at this time. I would drop him off to school every morning, as he really enjoyed the alone time with me, and it helped his day to start off better. He did take the bus home, which never went well. As part of his IEP, a harness was used to keep him safe. He often became disruptive on the ride home. Frequently the school called and stated I needed to pick Carter up as his behaviors disrupted the entire class, or he would not get on the bus. I was angry, sad, and frustrated.  Something needed to be done. Even with an IEP the school struggled with his behaviors. They brought in a speech therapist, OT, and a special education teacher's aide. Even with that, the behaviors were not improving. All this support at school and nothing changed. Finally, after a few conversations with family members, I called the doctor. Upon meeting with the family physician, I described all of Carter's behaviors, listed off the triggers I could identify at that time, and struggles with school. Carter was with me for the appointment. The doctor referred us to a psychiatrist for medication management. I was reluctant to attend this appointment, as I was strongly against any prescribed medications for my son.  As we entered the psychiatrist's office, I was nervous. This was against my beliefs, however, with all that was going on, I was willing to try a new approach to get the behaviors under control. Carter currently is still seeing the same psychiatrist, two years later. He takes two medications, one in the morning, the other three times a day. I also occasionally give him melatonin (for sleep) which is approved by his doctor. The behaviors lessened, Carter became more regulated. There were still meltdowns, however they were not as intense.  The school (in my opinion) was pretty horrible, and I did not feel comfortable with even the secretary. It seemed to be all the staff were a bit off. We moved to a different area our in town and I was able to open enroll him to the school he was currently attending. I did the best I could during the IEP meetings during the school year to express my concerns, to address the issues at hand going on at school, and to communicate how I felt I could help. Even with all of that, nothing improved; I was still called to pick Carter up from school, I received incident reports in his backpack almost every day, and one week I kept him home to give him a break. I cannot get into the exact details, I just feel the school did not have the support systems in place to accommodate to Carter's needs. Once summer break came around again, I was so happy - I planned to send him to a different school (again, and I hoped this would be the last time) and did some research on the schools within our school district. This was a different school district than where we lived before, so I had high hopes. During the summer, I reached out to a county worker (social worker) for some help with resources. She was able to connect me with a program that focused on social therapy, versus ABA. Once I met with the director, I was excited to start these sessions for Carter. We are still utilizing this program today, and the majority of my autism knowledge came from this program. At this time, I cannot include the name of the program, I am hoping during Carter's next session to see if I can get some information on the program to post here. If I am able to do that, I will include a page with their information. Once the school year started, the IEP team determined a full day of First Grade was too long for Carter. Part of his day he spent at an ABA therapy center along with the rest of his day in school. This worked out great for a while, then after the honeymoon stage, we had a few challenges. As the school year went on, it seemed the ABA therapy center was not enough. Luckily, there is an alternative school for children with behaviors, both special needs and mainstream. The team agreed upon Carter switching from the center to the alternative school for part of his day. We are still on this schedule, and it will continue next school year. How is Carter doing now? Carter is now 7 and finishing up his First Grade year of school. We have a good plan set in place, I am happy with his IEP team, and the supports I now have which have stemmed off this social therapy program. Carter is able to run errands with me for up to four hours, he likes to go to the grocery store and put items in the cart, and he LOVES going to the gym daycare. 4 1/2 years later, and we are finally in a good place. I would like to thank all involved in Carter's therapy, past and present, and I am so grateful for all of you. I have learned so much, and so has Carter. As I say often in my posts, patience is key. I waited years for a regulated, calm child. I still see meltdowns here and there, sometimes still receive incident reports from school, but all in all it is far from what it used to be.  My closing thoughts Autism is not something people outgrow, you just learn how to modify everything from basic hygiene to attending college or keeping a job based on your kiddo's needs. I have high hopes for Carter. He wants to go to college and create lab-made diamonds. I am so proud of him for his determination, bravery, and humor after all we have been through. He knows when he has meltdowns, is learning to self-regulate, and we are now processing after a meltdown to address the trigger and find a way to modify the situation or change behavior for next time. He is currently asleep on the couch (five minutes before bedtime) while he was watching **Minecraft videos. I understand now the autism will always change as he grows, and it will not just disappear. Carter may need to live with us all his life, or he may be able to move out and get an apartment at 18. Who knows? For all you autism parents out there, I encourage you to have hope, be patient, and do not be afraid to reach out for help. If I did not reach out to that county worker, I would not have the great support system I do now for Carter. I really hope you enjoyed reading my story of Carter's diagnosis, it brought back a lot of memories, good and bad. Thank you for reading, enjoy your day all 💙 **Disclosure: Reviews of products & referenced links are not sponsored by any affiliates and are solely the opinion of the Author; these are strictly opinions and honest advice, which should not be considered consumer or health guidelines. The Autism Soup and/or The Author are not responsible for any injuries or damage due to procedures listed above. Please consult with your doctor in regards to health concerns.