I had no idea when I started writing here, that so many of you would say, “Me too.”
Isn’t that just the way of things?
We think we are so alone, the only one. For me, nothing makes the load feel lighter than another mom sharing her experience and saying, “Me too.”
This post was written by a Not The Former Things reader on her new blog – Snips, Snails and Puppy Trails. She is honest. She is real. And she is living life, every single day, autism diagnosis or not, with intention and joy.
I write this list to prepare you, not scare you. No one prepared me, and I was caught off guard many times. It will be hard, BUT it is also filled with so much joy, love, and celebration! Just wait until your sweet child hits their first missed milestone.
- Breathe, and remember God gave you this child exactly how they are. He will equip you to handle what is ahead.
I knew that my husband and I were strong people; we have endured quite a bit together in regards to our kids: 4 rough and sometimes scary pregnancies, 3 NICU babies, and a horrifying airlift transport to the PICU with Charlie at 2 weeks old.
After all, we had 4 kids, boys none the less, all within 5 years, but Autism! This threw us for a loop, but we are closer than ever and navigate this new world the best we can. Some days are harder than others, but we press on, always remembering God has a plan. It was no mistake that God gave you this child.
- Contact your local regional center as soon as you suspect your child has Autism.
In our area, they have 45 days to even respond to a request. Everything in the arena of Autism takes time, so the earlier you reach out, the better. Your local regional center can not give a diagnosis, but they can provide services for your child with little or no charge to you. Also, they make the transition into the school district at the age of 3 much smoother.
- Get a formal diagnosis from a doctor.
This can take time, so don’t hesitate to make your appointment as early possible. A diagnosis means services, so the sooner you can see the doctor, the sooner your child can receive therapy.
Be prepared for your appointment, which I will discuss next, and look somewhat professional. You want to be taken seriously, so act the part. This is your new job; you are your child’s biggest advocate.
- Document everything!
Before we met with the doctor and Regional Center, I typed up a list of all of Brayden’s “odd” behaviors, delays, and hardships. I brought a copy with me to every meeting and appointment. I am certain this helped my son receive 30 hours a week of ABA from our insurance company, as well as 2 hours each of OT and Speech weekly.
In addition to this list, you will want to keep notes on all big appointments and insurance promised time lines. Keep all your paperwork organized. If you are organized, the professionals will take you seriously. Remember, the doctors can approve or deny services. Let them know you are serious about your child’s care by being prepared.
- Learn ABA and/or Floor Time or any other therapy that you think would be helpful.
To start, I employed Floor Time, which is basically playing with your child on their level, playing their way whether it is functional or not. I then moved onto ABA which I prefer, but I vacillate between the two. I will post another article laying out the steps I used to start play therapy with my son.
- Accept help and support.
I did not like accepting help from anyone, but I have learned over time that God provided us with a community of people to help us navigate the strains of life. My family is my community, and I am thankful every day for the help they provide.
During an exceptionally hard season of life, my mom, grandma, and my mom’s friend helped me with laundry and dishes regularly. It was hard to accept, but I am so grateful for the sanity and reprieve it brought.
In regards to support, find someone to talk to. This journey can be extremely lonely, and despite your friend’s attempts, it is hard for anyone to understand what you are experiencing unless they are in the same boat. Once Charlie started school, I met a great group of moms who I meet with monthly over coffee. It is a relief to share the same experiences with someone else. It makes this world feels a little less lonely.
- Get a hobby or keep up your hobby.
Before I had kids, my hobby was work. I worked 12 hour days and loved it. When I became a mom, my gears shifted, and my hobby became my kids. Then once my son received his diagnosis, my hobby was learning everything about Autism. Every night I would read books and blogs about Autism and how to help my son.
I read all about the history of Autism; I learned therapy strategies. I also read horrifying stories almost every day. Finally, this wore on me. I decided to turn my focus once again. To be an effective mom to all my sons, I needed some reprieve and revival. Currently, my hobby is writing. I find it very therapeutic and freeing.
Try to find something that brings you joy and energy. You might not have much time, but do your best to fit in a hobby even if it’s only a few minutes at a time. It will help keep you sane and recharged for this long journey.
- Be prepared to fight for whatever your child needs.
I hate to say this, but it’s true. Autism comes with many battles. Some are minor, and some will knock you down. When you begin, you may be fighting for services, and once you receive those services, you may be forced to fight for good, or as you should say when speaking to the professionals: ‘services appropriate for my child’s needs”.
My son was actually denied OT services, because his behavior was too severe. Yes! I was told that my son was too severe to be approved for therapy. Needless to say, he goes to OT for 2 hours a week and has for almost a year now.
Currently, I’m battling insurance to provide experienced therapists versus brand new therapists that are only making life more difficult. I’m also battling the school over diapering issues with my son. We can go months without an issue, then suddenly, we are swimming in fights and endless meetings over my son’s services.
- Be patient but always persistent!
Everything takes time! We waited 45 days for Regional Center to come to our home to evaluate our son. Usually people wait months to meet with a Developmental Pediatrician to get a formal diagnosis, but because I advocated for my son, we secured an appointment in one week. Unfortunately, several specialists missed the blatant signs of my son’s Autism. I documented the incidents and time frame and demanded an appointment as soon as possible, hence only waiting a week.
Then, it took us months to finally start ABA. After the diagnosis, the doctor requested an evaluator to observe our son in 3 different settings, on 3 different days. The evaluator had a month to write her recommendations. Then the insurance company had to review the report to determine how many hours they would approve.
Once our insurance company approved the hours, we had to find an approved ABA company. Most companies have a wait list of 3 weeks. That was my experience anyways. I am not telling you this to scare you. I was not prepared for all the waiting and felt desperate every day for help, not knowing when it would come.
- Know that the paperwork will end!
It may feel like you are drowning in a sea of paperwork, questions, and surveys. It will end. I’m not saying you won’t be inundated with paperwork again, but it’s not forever.
I struggled with all questions about my son’s behavior. I felt like I was only focusing on the negative qualities. I felt the need to constantly out-weigh these malignant behaviors with good qualities. It’s normal to feel this way, but remember, you are merely stating facts about your child’s current issues. This list does not define or confine him or her. Your child can move past these hurdles.
Good luck on this journey! It is filled with twists and turns, but it’s also filled with milestones accomplished, joy, and happiness.