An Autism mom’s fight.

Ike has always been a hyper, outgoing child. I would say 95% of the time he is happy. He’s always had a love for life. I love that about him.

At the age of 3, he started daycare/preschool. His teacher told me “Ike is probably the most hyper child I’ve met.”. We started coffee in school. We knew he liked it. He always drank ours. It helped calm him down. Coffee is a natural stimulant. Stimulants are known to counter act ADHD. So it only seemed right. I didn’t want him on medication. But after two years, and uping the coffee intake to two cups a day. Medication was the only option.

So at five, he started therapy. He was diagnosed with sever ADHD. The diagnosis didn’t sit quite right with me. But we were on a path to helping him. I accepted it. He started with low meds in the morning. It helped for awhile. But then we were back to two cups of coffee. That quit working too. Up the dose again. Crap… not working. Up it again.

We had a roller coaster. It was too much on his body. The meltdowns weren’t even touched. He was aggressive. He was emotional. He was a jerk when he wasn’t happy. Constant text and phone calls daily. I was constantly talking to him about his behavior. He just didn’t get it.

At the age of seven, I went to the school with a letter requesting they evaluate him for autism. They dropped the ball. They kept pushing me off. Even writing a letter. Which I didn’t write. My mother with a master degree and a 20 year career in mental health wrote it. They did nothing. This fight continued for two school years. I even reported it to the state. The state informed me they didn’t have anyone in our area to help. Wtf good was that. Ugh! So… back to therapy we go.

We started the second evaluation for therapy in three years. He was eight years old now. Meltdowns. Aggressive behavior. Pulling his own hair. Hitting himself, me, his sister. I just cried every day. I didn’t know what to do. The school wanted me to correct his behavior. I wanted to help but I just didn’t know how to help him. I was trying so hard. No one would help me, help him. This was my only hope.

At the end of the evaluation process that took three days… She said it. “I would like to have him evaluated for autism.” The shock took over me. Someone else seen it. Someone else was going to help me fight. It was no longer me against the world. I had someone in the mental health field there to stand in my corner and she did help. She sent us an hour south to have him evaluated.

The woman doing the evaluation went over it all. His past. His present. She sat with him and tried to play with him. But he didn’t know her. He wouldn’t let her into his world. Would not make eye contact. Which wasn’t uncommon. He didn’t make eye contact with me. And I’m adored by my son. Hours and hours passed by. We even stopped for a lunch break. Then back to it. She finishes it all up and says…. “I don’t need to score this to tell you, your son is autistic. He’s high functioning and that is thanks to the effort you as parents have put into helping him develop. The next step will be getting him into ABA. I will be getting back to you in a few weeks.”

The whole ride home I cried. Not because I was sad. But those years of fighting. Those years of begging someone to listen to me. Those years of being the warrior for my child. Finally paid off. Someone listened. Someone sat with him. Someone finally evaluated him. He was finally going to receive help. The help he deserved. May 31 2018. My boy finally was seen.

That summer his family doctor was changed. She changed his medication. He was happy again. His father and I fought tooth and nail on switching schools. The school he was in didn’t care. He was just another troubled number to them. I need a fresh start for him. I needed him to feel seen. I needed him to like school again. I needed him to start developing again. So we changed schools.

It was a new year. A new school. New medication and we had his diagnosis. I went into the school to speak to the principal about the past years. Give him the documentation that stated my child was autistic. He was sweet. He listened. It was unlike his past school. It was calming. I knew it would be good. But his lack of making new friends scared me a little. We were taking a big leap. A leap we needed to take.

It was a great leap. His new year started off great though. He had an amazing teacher who cared about each child’s need. She understood kids are a pancake. Not a cookie. None of those kids would fully stay in that cookie cutter and she understood Ike’s pancake was spewing out everywhere. But with her patience and understanding; he made friends. His grades got better. If he was having a bad moment. Thumbs down and he was allowed to walk down to the bathroom and get a drink. Calm himself down and come back to class. I was in shock there were no phone calls. No text messages. No meetings in the school. I was waiting for the foot to drop.

Parent teacher conferences came and when I walked in… there sat the principal. I thought I kept my feelings inside. The instant feeling of “ugh crap. It’s going to be the same crap.”. The principal smiled and said “I’m sitting in for all the conferences for this class.”. I calmed a little. Alright. It’s not just my kid. That’s new.

It started like it always did. Ike’s faults. His crying meltdowns. His downfalls. But it didn’t end with that. It went into what they were doing to help him. What tricks or coping skills they helped him with to help him. He asked me about starting him in a behavioral group to help teach him better skills. More accurate ways to handle situations. I left that meeting in tears. It really was going to be a better year.

While I was in the meeting, like all the other kids waiting for their parents. My kids were playing in the hallway with other children. Laughing and joking. Talking to the different tables. They had art club and marathon club. A few others but those were the ones my kids really wanted to do. What better way to help an autistic child socialize than to put him in clubs with their peers. so we did. His sister signing up with him because she adores him like the plants adore the sun.

To this day, it still shocks me what a road we’ve had. But I’m glad I didn’t give up. Im glad I kept fighting. I’m glad I made the decisions I did for my child. He does not carry an iep. His 504 plan has expired. But in this school he doesn’t need them to receive the benefits he needs. They want these kids to receive they help they need individually. He’s made friends. He’s got a best friend again. That adores him for who he is. He’s happy again. He’s my ray of sunshine. His needs maybe the center of our world at times when he’s overstimulated. But the fact is. My sweet boy is back and I wouldn’t have that if I would’ve rolled over and let anything stand in my way of what he needed.

Autism isn’t a single person thing. It’s a family. It’s a community. It’s a fight you can’t do alone. And I’m glad to say I finally have a group of people to back him up when he needs it.