Early intervention is key to helping your child on the Autism Spectrum! If I could tell anyone who may see some of the signs of autism or think that their child may have autism it would be to go and have your child evaluated!
This can be difficult to do. All of us as parents want our children to be “perfect” without any label or disability. It is hard to pick up the phone and call. It is hard to imagine what having an autistic child will be like. But ignoring the signs or not trusting your instinct could possibly make it harder for your child in the future. And my child as well as your child, is the most important factor. As a parent we want the best for our kids. We want to give them every opportunity to succeed. We want them to be loving, compassionate and to be contributing members of society. By making a phone call to set up an appointment to see if your child is on the spectrum is doing what is best for your child.
Jake’s story is like many others I have heard. Jake met his milestones but there was something that was just “off”. He was not imitating or saying simple words like mama or dada. He hated to be held or cuddled. He ate like a horse. He loved to look at the ceiling fans or any other toy that spun. He walked on his tippy toes. By the time he was walking and was able to play with toys, he didn’t really play as toddlers do. He would line his toys up, lay on the floor and stare at them. If a toy was out-of-place he cried. If we spoke to him he cried. If I tried to rock him, read to him or sing to him at bedtime he would scream. I remember how my best friend’s daughter came to babysit and we were talking about bedtime. I told her to just put him in bed, not to look at him or talk to him. I told her to just turn out the light and walk away. If she didn’t do this he would scream. The look on her face was questioning. I felt embarrassed that this was Jake’s bedtime routine. I remember wondering if she thought I was a bad mother for not snuggling him and singing or reading to him. But Jake couldn’t tolerate that close interaction.
What prompted my first phone call to our states early intervention services (Jake was about 17 months old) wasn’t that I thought he might be autistic but because he wasn’t talking. I saw a post on Facebook from a friend saying her daughter, who was the same age, was starting speech therapy. I thought, that’s what we need to do as well. A few weeks after my initial call a therapist came to my home and evaluated Jake. He failed all categories by a large margin. I was surprised to say the least. It was all hard to hear and process. But we dove into different therapies which helped. But along the way I knew I needed to have him evaluated for autism. This is going to sound a bit odd so hang on for a minute but when the developmental pediatrician said he was in fact on the autism spectrum, I was relieved. It meant I wasn’t a bad mom. It meant I had done everything “right”. I finally quit beating myself up. I stopped wondering ‘if only I had forced myself on him more that maybe he wouldn’t have so many delays’. I felt ready to dig my feet in and help this boy because I knew I had to do something.
By the time Jake was 2 1/2 he was involved in at least 4 hours of therapy per day. Most mornings we started at 7:30 where a therapist would come to our home and we would have an hour of speech, OT or developmental therapy. We would also go to an autism treatment center for ABA therapy for 3-4 hours depending on the day. I learned all that I could so when we weren’t in therapy we were working on what the therapists taught me. There was always a therapist at our home working with me and working with Jake. Our only free day was Friday and I lived for Friday’s!! It was hard. It was depressing. It was discouraging at times. But I prayed that it would help.
Many times I wondered if I would ever hear Jake talk, I wondered if I would ever see him play or enjoy being read to. My heart hurt for this child and selfishly my heart hurt for myself. I wanted so desperately for Jake to climb in my lap and sit with me to read a story. Jake would rather hide in a corner by himself. Jake would scream if I picked him up to hug him. Jake screamed if something disrupted anything he was doing. He didn’t enjoy being touched unless it was rough. He didn’t like to be talked to and he didn’t seem to like anyone near him. Much of the time he sat or played alone. My heart was so desperate for some type of response from my child.
Little by little, after many tears, after many meltdowns and after many very long days he started to interact with us. Slowly Jake found his voice and although he mainly repeated the words we said he had words and he had a way to communicate that was somewhat less frustrating for him and me.
On Tuesday of this week we had our annual IEP meeting. These are always long and somewhat depressing as we review all of Jake’s weakness’ and his strengths. Hearing all of his weaknesses that need to be worked on usually outweighed the strengths. But this meeting was different.
For the first time since we started preschool and more than a handful of meetings this IEP held nothing but positive affirmation that Jake is succeeding. We discussed how far he has come since we started going to this school. Three years later Jake is performing in the 90% of all kindergarten children, that is typical and neurotypical! Jake is able to be in a kindergarten classroom with no behaviors. Jake is playing with his peers, raising his hand, standing in front of the classroom to help his teacher or to write on the board. Jake is happy. Jake has reached most of his IEP goals. Our main goal for Jake when we entered preschool was to prepare Jake for kindergarten. To prepare him so that he would be able to attend a typical kindergarten class with minimal support. And we have met this goal!!
You heard correct; we met our number one goal! This is huge for Jake! I say we but Jake did it with our help. He is the one who goes to school every day and applies all that has been taught. He is the one who has to make the choices every day whether to melt down or use his words. Jake is the one who works his little tushy off to succeed. We were able to give him the tools but Jake deserves all of the credit for where he is at this point and time.
There is a saying in the autism community which states “when you’ve met one person with autism; you’ve met one person with autism.” I have yet to meet another child just like my Jake. My sons symptoms are different from some of my friends who have autistic children. But they are similar. Something I have learned on this journey is that what works for Jake might not work for another child and what works for another child might not work for Jake.
Because each child on the spectrum is their own unique person it can be quite difficult to find a program or programs that works best for your child. There is no liaison that can tell you what to do or how to to go about getting the services you want and need. I have had to go with suggestions, then do my research and figure out what program, strategy or plan works best for Jake. It is daunting to say the least. My friend and I have often said that I need a liaison!! Someone to do the research for me and help point me to what is best for Jake. Someone to guide me in making the best decisions.
But the best person for this job isn’t a stranger. It is me, the parent. I had to do it because I know Jake best. I tried to approach each new program without emotion. I tried my best to be realistic in what Jake could or couldn’t do. I had to go with my gut instinct and if something didn’t feel right I had to remove Jake from that situation. This was hard at times especially when others kept saying “it’s the best one”. I didn’t always do this in the beginning. I remember one instance where I was sitting with a paraprofessional and we were teaching Jake to use a spoon. He was screaming. He wouldn’t stop screaming no matter what the para tried to do. I wanted to put a stop to this but I knew the paraprofessional was doing what my BCBA (Board Certified Behavioral Analyst) told her to do. I sat there with tears in my eyes not knowing what to do. Finally my BCBA excused the paraprofessional and we worked on getting Jake to a calmer state. After he was calm and went to play she told me something I will never ever forget. She said “Laurie, you can say no at any time. Jake can’t speak for himself so you have to speak for him. It is okay to voice your concerns. If you don’t advocate for him, no one will.” In that moment I knew she was right. You see I am a people pleaser by nature. I don’t want to rock the boat and at this point and time I thought ‘who am I to say no, this must be how it goes’. Also because I was a new autism parent I figured everyone else knew better than I did.
But I listened to Jake’s therapist and from then on if I saw that someone working with Jake was not a match I made sure that person didn’t work with Jake again. It wasn’t personal; I had to stand up for my boy. This was by far one of the hardest jobs I encountered at the time; advocating and using my voice to speak for Jake.
I am so proud of where Jake is today and much of his success is because we started early. And I have to say it is so rewarding to look back to where we were 5 years ago to where we are now. It feels amazing to see how far Jake has come. The emotions I have are nearly indescribable. The years of early intervention have paid off. To see Jake now is like witnessing a miracle. I had faith. I had hope! I continue to have faith. I continue to have hope!
‘We have this hope as an anchor for the soul, firm and secure…’ Hebrews 6:19