I remember the exact moment my world started spinning. It was February 17, 2017 at approximately 11:00 AM. “Let’s test James for autism.” We were at his three year visit when his doctor dropped this bomb on me. Truthfully, I had been questioning what was “wrong” with him for a year. But for a professional say it out loud felt like someone kicked me in the stomach. We waited seven weeks for that next appointment where a child psychologist would perform the ADOS (autism diagnostic observation schedule). At the end of the appointment, we would be told if our son was on the spectrum. During that time, I didn’t look up anything on autism. I did watch him with a different set of eyes — trying to catch something that would tell me one way or another. Could it really be? No way.
The Early Signs.
James is my first child. I am the youngest in my family and one of the youngest cousins. Instead of babysitting growing up, I pet sit. When my mind starts wandering into those unforgiving places, I sit and wonder if, had I known anything about babies and kids, could I have detected this earlier? James wasn’t talking at 12 months and had very few words by 18 and 24 months. I enrolled him in speech therapy just after he turned two. He now has a normal range of words for his age, which made it that much more difficult to notice. Boys talk later than girls. This was the first excuse.
James rarely sought out interaction with his peers. He’s shy. He made me repeat EVERYTHING he said. He’s reassuring himself that I understand. He would line up his cars in perfect order, pick them up, hold one an inch from his face and stare while spinning the wheels. He likes cars. When something excites him, he jumps up and down and briefly flap his hands. He’s animated. He doesn’t like loud, startling noises. Who does? He didn’t mimic me, other kids, or do make believe play. So what? Becoming fixated on non-toy objects can be his norm. For example, he likes to watch closely how the toilet paper roll moves. He’s exploring. He was absolutely inconsolable once he melted down. Hello! Terrible twos! I sat and wondered — what am I doing wrong? Something just does not seem right.
BUT.
He smiles. He loves his cousins and the boys up the street. I can drive to his grandparent’s house a different way, and it doesn’t phase him. Once he found his voice, he talked. He is social once he warms up to people. He is silly, tells jokes, and sings songs. When we go for walks, he waves and says hello to each person that passes. I can leave the house with him without a plan, and he (usually) smiles and enjoys the ride. I have taken him on upwards of fifty airplane flights without one incident. And he is mine. He’s mine, and I am not strong enough to handle this. There is no way he is autistic. Right?
The evaluation.
On April 5, 2017, James and I sat in a room while two child psychologists assessed him using the ADOS. One psychologist played with James, asking him questions, interacting with him, and observing how he reacted to various situations. The other talked with me, asking me questions about James. It felt like the biggest test of my life. If I answered wrong, I was sentencing him to a life of disability. At the end of the 2.5 hours, they both left the room, promising to be back withing 15 minutes with an answer. “Sit tight. Do you want a water?” More like a vomit bag.
My world started spinning seven weeks later. I lost control with the confirmation that my instinct was correct. James was on the spectrum for autism. The next half hour of the appointment was filled with sobs, vanishing dreams, paperwork with information, and promises that everything would be okay. James is high functioning, which is why not even my husband or anyone else except myself and his pediatrician suspected it. Nothing can prepare you for parenthood. Nothing. I felt like the dust of the early and (impossibly exhausting) years with James and adding his younger sister had settled. We were starting to get the hang of it. And just like that, our world flipped upside down again.
I spent the next two days crying.
A haze came over me. This poem so perfectly described how I was….am…feeling. I sent the kids to my in-laws so I could wallow in my self pity, guilt, and utter sadness. I drank a lot of wine, wondering if I did anything to make this happen. Should I have brought it up to his pediatrician the first time I suspected it? Would it have changed anything? Will he ever get married? Have kids? Can I still send him to Catholic schools? What if he never has friends? Will he go to college?
I also felt a weight lifted off my shoulders.
His past behaviors that I struggled to deal with now made sense. Now, there exists a whole network of professionals and families that we belong to. I struggled to find a place to belong in this whole world of parenting. I’m a loud-mouthed northerner living in the south. But now? Now there are people who just get it. They remember that day their child was diagnosed and immediately offer support. I could finally get him the help he needed so he could be the most successful person he could be.
I spent two days crying and feeling angry and sad. Then it was time to get to work.
Pregnancy gives you several months to “prepare” for your child. When you get an autism diagnosis, you are shoved backwards into a very confusing world filled with information, wait lists, and uncertainty. There is still so much that is unknown about autism — making it even more challenging to navigate. I pride myself on being an organized person, but I was completely overwhelmed and didn’t know where to start.
If you are new in this journey, welcome.
Here is what I did the first month after my son’s diagnosis. (I am not an expert. FAR FROM! I am simply a mother trying to navigate this incredibly confusing world.) While a lot of this will be more helpful to those living in middle Tennessee, it is a good start for anyone new to this journey. Take what helps you, and leave what doesn’t.
Tell (or don’t tell) people.
This diagnosis is yours to do with what you want. We told everyone we knew. As soon as his pediatrician suggested we get him evaluated, I contacted his speech teacher and let her know. The next week she switched her lessons from one on one therapy to small group sessions where he worked on social skills with peers. James attends a daycare twice a week. We told his teacher, and she immediately was more aware of helping him interact with his peers. People will help, but you have to let them in first.
Say it out loud.
I sent an email to my family and close friends. I also told them I didn’t want to talk. It was so much easier to hide behind an email. The first time I said it out loud to someone, I thought it was going to break me. Tears would well in my eyes the first few weeks I said it. But it gets easier each time.
Cry.
It’s okay to cry. I cry because I’m tired, I’m frustrated, I’m scared, and I’m angry that this seeps into every moment of every day — and it will continue to do so for probably my entire life. Because I see other neuro-normal kids, and my heart aches because I don’t know if I will ever have a “normal” conversation with James. I don’t know if he will ever tell me he loves me because he wants to and not because I prompt him. I cry because being a special needs parent is really, really, really hard. Cry.
Allow yourself to grieve. And then wipe your eyes and get back to work. Your child cannot do this without you, and it will not go away if you ignore it.
Make a Target run.
I know, I really have to twist your arm, right? Buy a few large 3-ring binders (I bought three), a 3-hole punch, pencils, highlighters, paper clips, post it notes, a small notebook, and a small calendar. Buy something for yourself too.
Print out the 100 Day Kit from Autism Speaks.
This gives you a week by week “to do” list.
Organize your information.
I have one binder for all general things related to the diagnosis. My second binder is for James’ speech therapy and occupational therapy information. My third binder is for his IEP (individualized education plan) and future school information. For this post I will focus on the autism binder. To date, mine has the following sections:
- Contacts – medical, therapy, support and other
- 100 Day Kit
- ABA
- Phone and Email Record
- Vanderbilt – all information from the psychologist, Vandy support groups, research, etc
- General Info
Join support groups.
- There are Facebook groups specifically for parents with autistic children. Join them. These men and women are filled with information, compassion and kind words.
- I got lost in this blog. Chrissy is a mother to two young boys, both on the spectrum. She is real, witty, full of information and has a way of writing that makes you feel like you are not alone.
- Nashville has a special needs kids playgroup. Email [email protected] for more information.
Outline your plan.
The psychologist will give you a summary of the ADOS evaluation and in it contains a brief outline of what they recommend. Early intervention can improve the quality of life for your child and your family. My (very condensed) list looked like this:
- Get evaluated for an IEP (individualized education plan)
- Implement visual supports– visual schedules, first-then boards, timers (more on this in another post)
- Continue speech and occupational therapy
- Start ABA (applied behavior analysis) services
- Parent support
- Get involved with research and resources
Read.
Knowledge is power. These are great books.
- Ten Things Every Child With Autism Wishes You Knew by Ellen Notbhom
- Overcoming Autism: Finding the Answers, Strategy, and Hope That Can Transform a Child’s Life by Lynn Koegel and Claire LaZebnik
- Chicken Soup for the Soul: Raising Kids on the Spectrum by Dr. Rebecca Landa, Mary Beth Marsden, Nancy Burrows, and Amy Newmark
- Teaching Social Communication to Children with Autism by Brooke Ingersoll and Anna Dvortcsak—This book is fantastic! And great for teaching all children, not just those on the spectrum, to use their voice.
- An Early Start for Your Child with Autism by Sally Rogers, Geraldine Dawson and Laurie Vismara
- From Emotions to Advocacy: The Special Education Survival Guide by Pam Wright and Pete Wright—Read this before your first IEP meeting!!
Explore local resources and activities.
These sites are filled with information, contacts, research, workshops and short online parent training videos like this one (All you are required to do is register). There are a lot of websites to sort through. Decide which one will be most helpful to you. Here are a few places to start:
- Vanderbilt Kennedy Center
- TRIAD (Treatment and Research Institute for Autism Spectrum Disorders)
- Autism Tennesse
- Support and Training for Exceptional Parents (STEP)
Start searching for local businesses that offer special needs time slots for kids. Sky High Trampoline Park in Nashville has a Special Needs jump time every week from 3-6 PM. Distractions minimized, music is turned off and children and adults with special needs and their entire family can jump for only $5 a person. Regal Cinema theaters launched a program called My Way Matinee where various locations around the country offer special sensory-friendly showings for children with autism. Opry Mills theater is your Nashville location. The Nashville Children’s Theater offers sensory sensitive shows. Check out the list here.
Explore advanced resources.
Be careful about what information to read and decide is true. There are a lot of “experts” on the web these days. Never hesitate to contact your child’s psychologist.
- Autism Speaks
- National Autism Center
- The National Professional Development Center on Autism Spectrum Disorder
- Autism Internet Modules
- Autism Navigator
Go shopping.
Take a drive to south Nashville and check out Therapy in a Bin: Mindful Toys. They have countless tools that will help you and your child. Visual supports, fine and gross motor activities, sensory toys, empathy board games and more. Bring your child because they have an entire room dedicated to sensory needs. They also know people to support you in this journey. Just ask.
Get an IEP for your child.
An IEP is an individualized education plan for each child that needs special education in the public schools. I will expand on what is involved in the initial assessment and how to prepare for your first meeting in a future post. For now, your first step is to contact your school district and request an application to start an IEP. If you are in Davidson county, Debbie Umans is your contact person at 615-259-8702. Once this arrives in the mail, complete the packet. This step took me DAYS. Paperwork to fill out, documents and evaluations to find. Get all of it. Do not miss one piece of information. One missing piece will delay the entire process.
Find an ABA therapist.
First you will need an MD order with signature’s from both your child’s pediatrician and psychologist. You will not get anywhere without this. After you have this paper, find out what places accept your insurance. This is a good list to start with. The therapist assigned to your child will come to the house to gather as much information from the parents as possible before having the first official session where they start their observations. During that first meeting you will go over your child’s strengths and weakness, what the behaviors are you want to address, a brief overview of how ABA works and schedule the next meeting.
Start calling and emailing.
Keep records of who you contacted, what day, what it was about and a summary of the communication relayed. I called and emailed over a dozen ABA therapists. Do yourself a favor and stay organized here so you know who you have tried to reach, if you talked to someone or left a voicemail because you won’t remember. Write it down.
Follow up and take charge.
Do you know who has to do the work to get your child the best interventions? You. Be annoying. Call. Email. Call again. Do you know how I finally got an ABA therapist to start the process of getting insurance to approve and a first appointment set? I drove to the office and didn’t leave until they had all the paperwork, information and numbers they needed. They will tell you there is a wait list and you are number 29. Put your name on the list and keep calling other places. Find a way to get on busy schedules. Be persistent.
That handheld notebook you bought?
Write down thoughts and questions as they pop in your head. I sent the psychologist an email every week of questions I had in the first month. You will have so many questions that pop in and out of your head constantly. Get answers to them, no matter how dumb you may think the question is.
Gather supplies to make first-then boards and visual schedules.
Children who live with autism are often times visual learners. Browse Pinterest or google and see what kind of visual schedule or reward chart would work for your child. In the meantime, use”first then” in your daily vocabulary. Keep sentences short and to the point. “James, first eat breakfast then you can watch Curious George.” “James, first go potty then we can go outside and play.” I couldn’t believe the difference this simple tweak made in our lives.
Advocate for your child.
Learn to speak up. If you don’t like the way something is done, say so. Learn to say NO. Demand action. You know your child best. If something doesn’t feel right or a therapist doesn’t mesh well, or a “supportive” person is anything but, leave it behind. Form a relationship with his or her teachers, therapists and doctors. They will be a part of your life for a long time. Be open and honest and keep communication going back and forth. You must stay involved. Your child cannot do this without you. You cannot sit back and hope this diagnosis will resolve itself on its own.
Surround yourself with supportive people.
You will encounter people, online or in person, who will cast blame on you. “Vaccinations caused this.” “You didn’t do X enough and that’s why this happened.” “Your child will never be able to do X.” You don’t need them in your life. Parenting can be lonely. Parenting when your child is diagnosed with a disability promises to intensify that. Many kids (mine included) who live with autism don’t look different from their typically developing peers, so other people don’t realize how challenging the job is for the parent. Ignore the comments, ignore the stares, ignore the judgment and focus on your child. The people in your life that care, that really truly care, will come to your side.
Don’t forget: Your child is a child.
Yes, they now have a label you didn’t ask for. But they are still the same child you have known and loved all this time. Nothing has changed that.
Take Care of Yourself.
Take a break. If your parents or in laws live nearby, ask for a night off. I took a weekend away, no kids or husband, to visit old friends and it was exactly what I needed. Be selfish. Sleep. Go sit in your car and scream away your anger and sadness. Remember this scene from This is Us where Kate gives that gut-wrenching scream? Gives me chills. This is exactly what I need to do sometimes to make myself feel better and release my stress. No one needs a burned out momma.
Spend time with your other children and husband.
They need you too. It’s easy to get lost in the chaos of the diagnosis. Don’t forget the other people in your family.
There isn’t an hour that goes by each day I don’t think of this diagnosis. I’m constantly on high alert. And you know what? It sucks. It’s okay to say that and feel it. But it’s going to be okay. It will.
I hope this has been helpful if you are in the early days of your child’s diagnosis. I am here to answer any questions to the best of my ability. Remember: “If you’ve met one child with autism, you’ve met one child with autism”. The spectrum is broad. Not one individual will look, act, or need the same services. That is why it is best to educate yourself in all areas. Find what works for your child and for your family.
