Where do I go from here? The diagnosis aftermath. I remember when we got the official diagnosis in January of 2014. Carter had just turned 2 and a half and I was ready to hear someone actually say the words – “You’re son has autism.” We had been going through a particularly tough couple months with Carter pinching and hitting since he was not able to communicate with us his wants and needs. We had been trying sign language for the past 9 months with no luck. Trying to get him to sign ‘more’ was a nightmare. You had to prompt him by touching his arm – he just wasn’t getting it or seeing what it could do for him. I gave up. I thought he will never learn to sign, what’s the point in trying.
Well, thank God for the diagnosis, because it helped us get ABA (applied behavioral analysis) therapy, speech and OT covered by our insurance with no limit to services (if you don’t know about habilitative vs rehabilitative speech and OT, ask me and I will do another post about navigating private insurance). Carter started receiving private services in March of 2014 and we saw immediate improvement. He was getting 2-30 minute sessions of private speech and 20 hours of ABA therapy a week. He started learning signs at a record pace and his problem behaviors went away almost immediately.
Carter started developmental delay pre-k in the fall of 2014, so he was going to pre-k in the morning, usually speech or OT in the break between pre-k and ABA, then ABA therapy. He was going from 8-5pm Monday through Friday. I was exhausted. I can’t imagine how tired a 3 year old would be doing all this, but he handled it like a pro. We had tried ABA at home and that didn’t work for us. Carter is extremely attached to me (and still is to this day) and wouldn’t work with anyone else if I was there. So we luckily found a center-based ABA therapy in Edmond and were fortunate that is was in-network.
I know that the diagnosis can seem overwhelming and the tasks ahead daunting. But remember that the work put in now will make a world of difference when your child is older. I look at Carter now and see the progress he’s made and couldn’t imagine having gotten here without all of the therapies. I sometimes think about his first therapists and how impressed they would be with my little boy. He surprises me everyday with how much he can do and I want to give him the best opportunities I can. That’s why we moved – to give him the best services we could find.
You will be bombarded with advice and people telling you what the best thing to do. What medicines are the best, what therapies are the most effective, what diet to try next…just do what works for your child. We have tried things that have worked, tried things that have failed and tried things that didn’t seem to change in any direction. Be willing to think outside of the box and when in doubt, ask God for guidance and direction. Most of the information I found the first few months to a year after his diagnosis was from other parent blogs and late-night google searches. God directed me to different sites and I was able to gather information important for services and validation of my feelings. Learn to lean on God during this time and trust that he will direct your path.