After the Autism Diagnosis…. Now What?
Even though I saw my son’s autism diagnosis coming, nothing prepared me. It knocked me down, even though I was ready for the impact. Now what? Navigating through this is not going to be easy.
When J was two we enrolled him a preschool program, that was 2.5 years ago. At the time, we were in the wait and see stage, of his diagnosis (read My Son’s Autism Diagnosis for more info) which lasted several years. J did not do well in the preschool program. He cried, plugged his ears, and wanted nothing to do with the staff. He wouldn’t eat or drink or play with the other kids. I tried to arrange ways to comfort J with the staff and even though they told me they would do these things to help, at the end of the day when I would pick him up they would proceed to tell me that they can’t accommodate those needs. With no phone call of concern from the center about his behavior, I became very worried. If he isn’t participating, eating, drinking, and crying all day parents should be notified, especially when they have already made a plan of action. They told me they would help get him settled, and they didn’t. From then on I decided, he was not ready for preschool.
After discussing it with his pediatrician, she diagnosed him with anxiety. J ended up staying home with me because I could not put him through the anxiety of what preschool brought to the table. And without a diagnosis, he did not have access to services.
Now that preschool was out as an option, this meant, that I had limited time to work. Nap time, waking up early, and staying up late became my working hours. Luckily, I did work from home so I was able to be flexible.
Through Facebook, I met a fellow mom who lived very close to me. After meeting her and discussing J’s needs, she agreed to help watch him a few hours a week so I could work. She had experience taking care of special needs kids, which helped the situation a lot. The arrangement worked out well until this lovely lady decided to go back to college to finish her degree. I miss her help to this day. I don’t think she realizes how much help she actually provided for myself and J. The value of the help she gave me is priceless.
After searching several different places and people for a replacement, I never did find one. J had too many challenges, and honestly, I felt like someone would get frustrated with him and hurt him. Since he couldn’t talk, it made it even more difficult.
Don’t get me wrong, I LOVE my job. But taking care of 3 kids (one with special needs) two dogs, a house, all the errands that come along with being a parent, PLUS working, was very overwhelming. And I had no outside help. My husband was very helpful, but he works 45+ hours a week, outside of the home, which keeps him away from the house for a majority of the time.
No mom, no dad…. not a neighbor to borrow sugar from. It is going to be a hard maze to navigate.
Now to look at the positive side of this situation. Even though my oldest brother lived states away, both he and my sister
in law have been a huge resource for me. They’ve helped me any way possible. Their amazing support, love, and understanding astonish me, and I’m so lucky to have them in my life. Thank you Dr. D and family.
But I’ve also realized that I need a village. Not only for my kids but for me too. I have huge mountains to climb with my boys. The hurdles seem so large that not even an airplane would be able to clear the stick.
But where to start? Now that I had a diagnosis, we can get access to services. With my stack of papers in hand, I jumped right in.
We received a book from J’s psychologist called 100 Day Kit For Newly Diagnosed Families of Young Children, Written by Autism Speaks. I skimmed through it and the first tidbit I read was about telling the people you love about your child’s autism diagnosis. One blurb from a mother of an autistic child stated that when she shared the diagnosis with her mom, she quit her job to be available to help with the care of her grandchild. That is absolutely the best solution to the problem. But what if you don’t have a mother? Really not a good first bit to read when you’re a motherless parent searching for a tangible solution
I had a bit of a meltdown when that happened. I miss My Mom. And I know she would’ve been such an incredible resource, advocate, and Omi. If it were only that simple…. to call on mom. For those of you that have that option…. embrace it. Soak it up. Make time for her, because you never know when it will be over. At that moment, I had to put the book down.
If money was not an object, my solution to meet all my son’s needs would be wrapped up in the hiring of his psychologist. She knows exactly what he needs and how to provide that for him. The only thing I know about autism is what I’ve read from Google before the diagnosis.
Finding the Right Services for Autism
Research shows that for J to thrive, it is recommended that he receives a certain type of therapy called ABA therapy. After learning about this tidbit I started researching ABA therapy. It sounded like the help my son needed, and it had worked for so many other families. The problem that I soon found out is that the state of Idaho (where we reside) does not have any requirements for providing services to kids on the spectrum, so ABA therapy is extremely hard to find in my area.
The problem that I soon found out is that the state of Idaho (where we reside) does not have any requirements for providing services to kids on the spectrum, so ABA therapy is extremely hard to find in my area.
Among the stack of papers that were handed to us on the day J was diagnosed, was a brochure for an ABA preschool. It looked very promising, but the only problem was that it was about a 45-minute drive one way from home. Next to impossible to meet those times when I have other children to look after. So, even though that was the most promising lead, it was eliminated.
While I’m researching therapies, ABA preschools, and other habilitative services for J, we are going through the motions of accessing services. This brought on a few different interviews with insurance agents and case workers. With every appointment, I thought we were done but was surprised to find another interview and forms had to be completed first. What a pain in the butt. It had been YEARS that we waited for a diagnosis, and now we are stuck among paperwork and appointments.
Along the way, I found out about a pilot ABA preschool program that starts in the fall of 2017. J would get one-on-one help in a preschool setting. His HI (habilitative interventionist) therapists would be available just for him. The program is a big commitment, and it is a bit of a drive from our home. Weighing everything, and the options we had available to us, my husband and I decided to enroll him in this program.
The preschool center will accommodate his special needs. They will even let me stay with him while he gets adjusted to the new routine. I just hope that we’ve made the right decision. In the meantime…. we wait for the paperwork to be finalized and his plan to be sent to the center. If you’re in the middle of this mess too, feel free to share your frustrations and solutions.