A Mom’s Perspective…

Having someone in your life who has autism is both challenging and rewarding in so many ways. They teach you a different view of life and to “slow down and smell the roses”. They teach patience in their own way. They teach you how to be caring in so many different ways that change you as a person, as a family and as a community sometimes.

My son was born an average size and most everything normal; except he was born with blisters all over him, they said it was a virus and within a few days they were gone and untreated. When he was about six months old, he fell below the growth chart and created his own. He was our little “peanut”. Braden was always delayed in learning, making milestones much later than other children his age. He wasn’t fully potty trained until he was about four, with many variables playing a part. Braden didn’t have the interest in using the potty until his younger sister did. We, the kids and I moved to Napoleon, ND about that same time as I was going through divorce from their father. We had some setbacks, but got through them. I was on my own, with a little help from my parents and a couple of close friends.

BECEP, early intervention, played a part in Braden’s life, even though we lived in rural North Dakota. He was in speech therapy early on, having one-on-one sessions in the school when he was four. He then attended kindergarten in the rural community and was evaluated by a school psychologist. He hinted that Braden had PDD (Pervasive Developmental Disorder) but that he could outgrow it. We continued with therapy as much as we could in the rural community.

In 2008, my children and I moved to Bismarck, ND. A big year of changes for our family. Braden was six and attended kindergarten in the Bismarck Public School System. The teachers knew right away that he was delayed and questioned me beyond belief. The journey of the dreaded IEP meetings began, with absolutely no direction from the school or staff. Then CPS (Child Protective Services) and Social Services was involved as they tried to prove some kind of abuse/neglect. They were very active in our lives and always only had a tidbit of the actual truth of how things were going. The following year, the opportunity to have my children attend a different school was an option and we took advantage of that.

We as a family learned very quickly, that routine was a must. When Braden’s routine was disrupted, it was a bad day quickly. He spent every other weekend with his father and his normal routine was not followed at all. And that usually caught up with Braden by Tuesday morning. Often Tuesdays Braden had to stay home and rest to reset and get back into his “normal” routine.

Braden’s second grade year was bad; his behaviors with aggression and frustrations took over. The teachers were trying to have him do work that he couldn’t do and more work then he could do. Braden didn’t know how to express this and the school staff didn’t know how to work with him. Then Braden was hospitalized in the psych ward and put on ADHD medications, without my consent or choice in the matter. Part of Braden’s trouble was that he didn’t sleep or he slept very lightly; which also meant that I didn’t sleep much either. I made a CD of pan flute music to help calm him when laying down for bed. We would start it when he went to bed and it would still be playing in the morning when it was time to get up; it did not have a repeat button. He would restart the CD throughout the night whenever it quit because he was “listening” to the music. Shortly after that, we saw a different psychiatrist and got several diagnoses; including Autism, SPD (Sensory Processing Disorder) and ID (Intellectual Disability), along with ODD (Oppositional Defiance Disorder) and Anxiety; a couple of others too. During this time we also visited a sleep specialist and received the diagnosis of Sleep Apnea. None of that was the answer as his behaviors continued with so much frustration and anger that turned into aggressive and combative behaviors towards teachers and at home with me and his sister. It was after all of this that we as a family got some help. We had a parent aide and Pride staff to help take some of the burden off of all of us, providing some respite care for Braden and giving all of us a short break once in a while.

I remember getting a for sure diagnosis, when there was no doubt that this is what’s going on with my son. It was a tough pill to swallow to say the least. Why people ask? Well, because it gave him labels and as a mom, you never want your child to have a label or labels. All of a sudden, we knew nothing about this young boy that we thought we did because he has a disorder, he has something that is incurable and not going to go away. Life was going to pose challenges that were very unknown and difficult. There weren’t resources other than books to read. We then understood why Braden did some of the quirky and weird things he did, like tapping or drumming on everything. Why he wouldn’t eat hard and crunchy things like potato chips, French fries or cold cereal. Wait a minute! He’s still the same kid, we know his needs and will take care of them. This doesn’t change him, this just changes our mindset and how we need to do things to accommodate him better. He’s the same kid, nothing changed. We won’t change anything, because this doesn’t change anything. We will still love him, no matter what. We will do everything we can to keep more of a routine for him in every way.

We continued to have many struggles and we were able to have Braden evaluated once again, this time by the professionals at Anne Carlsen Center in Jamestown, ND. We, my dad and I spent a day or two there with Braden and many of the staff. We expressed concerns we had, his levels and milestones achieved, etc. We went over reports from the school and his IEP, as well as notes from his therapists. We went over his life in its entirety. They did evaluations and confirmed that he was a very complex child. We were not looking for placement there and were questioned on that. We were looking for some kind of answers because nobody had any for us…ever. The resources were so limited at that time. 

When Braden was in the fourth grade, his aggression was more and his frustrations were always; lessor at home, but we saw it often. That was the worst year ever. I got phone calls regularly and showed up randomly at the school to check on Braden. He had to take naps at school, his grades weren’t good because he couldn’t do the work they were demanding of him. And even worse, he would get so frustrated and combative and he’d scream because the teachers/paraprofessionals (usually four of them) would hold him down and his sister would hear him two classrooms away. He came home with bruises and hated school. He had very few friends, if any. The bad days or tough days outnumbered the good days. We had an IEP meeting with more than 30 people present; including his therapists (speech, OT and counselor) and many other professionals who were very involved in his life, as well as a couple family friends. At that time, we were presented with the opportunity to change schools and start over with different teachers/staff; we opted to stay at the present school as he only had one year left in elementary school. One of their biggest concerns were that academically he was lagging terribly and they wanted him to be where the rest of his peers were. That was impossible for him to achieve. My exact words were, “You can’t make him be somebody he can’t be. Push him to succeed instead of continuing to push him to fail.” Finally, they modified his curriculum a bit. They gave him less work and helped him understand with terms he could comprehend.

Then we had the transition to middle school, boy was I worried. Guess what? It went pretty smoothly and Braden succeeded much more. He had less meltdowns, less aggression at school. He still did annoying things like tapping on nearly everything, eating random weird things he found on the floor, chewing off pencil erasers and so much more. We tried to curb that by giving him gum throughout the day. Things went pretty well…at school. At home, he was still the same boy with aggressive physical behaviors, lashing out at me and his sister and very exhausting to say the least. It was later explained to me that he held it together at school because he had to and home was his “comfort zone” and he didn’t have to try so hard. He could let loose at home and it was ok. That was hard to hear, but it made complete sense. We loved him unconditionally and he knew it.

The time came for transitioning to high school. Well, to my surprise that went well, really well. The IEP meetings were less and not as intense, they fell together. Braden’s needs were mostly met and if not, they were open about it and didn’t hesitate to ask. We had a great team to work with and they did what Braden needed. When Braden was a sophomore, he was invited to 12 graduation open houses. So, did people just invite him because he was the “special needs” kid or were they being genuine? I asked my daughter about this and she said, “NO mom! He’s an idol! They love him.” He helped with the Bismarck High School boys’ basketball team for a few years. He loved it and they loved him. When they didn’t have half-time entertainment (during Covid), he would shoot 3-pointers and the crowd would cheer him on. He’s the short, quirky kid out on the court that everyone knew.

Today, Braden has graduated from high school and learned a few independent daily living skills through Life Ed. He has his own lawn mowing and snow blowing business that he built in our community. We live in a manufactured home park and he helps many of the people with his services at a very low rate, because he wants to help and he takes much pride in that. Nearly everyone in our community knows him. Braden taught our family and friends a lot of things throughout the years. He has helped us become the people we are today and I wouldn’t change that for the world. He’s so caring and has the biggest heart! He is not physically aggressive anymore and has come so far. He still does some of the quirky things he used to, but don’t we all have our quirks!

~Written by Cathy Job with Braden’s permission and encouragement.