I have three kids and they are each quite different people. Even as babies, I could see how different their personalities were. One was very cranky but grew into a very calm, funny boy. One was the quietest baby I’ve ever met but is an Academy Award winning actress in the making. J, however, has always been a bit different than his siblings.
As a baby, he was so easy to care for we nicknamed him the “Buddha Baby.” He started talking in 3-word sentences at 15 months old. He was walking around one-years-old . He loved everyone and would hug you so tight that you never wanted to let go. He gave huge smacking kisses on everyone’s cheeks. This changed somewhere around the time he was age four. I thought that maybe the “terrible twos” had gone on a bit too long, and he was just going to be a challenging kid.
At first, I wasn’t worried. He was just a little more energetic than the other two kids and got mad a little easier. As time went by, I realized things weren’t that simple. He was getting more aggressive, hitting his brother and sister, and at one point, neither of them really wanted to play with him. He also started tearing things up at home. He also hit me. He struggled at preschool- he wouldn’t engage with the other kids, barely talked and even though it was obvious that he was very smart, he just wouldn’t participate. He also stopped giving the hugs and kisses that we loved so much. My J was gone. I’d lost my loving, sweet little boy. I had no idea what had happened to him, but I wanted him back.
I talked to his pediatrician, who recommended an evaluation. That evaluation went well, but neither of us agreed with the diagnosis-, Adjustment Disorder. It didn’t make sense. In the meantime, I started reading up online and in books. I just wanted to know what was going on with J. I wanted to help him, but I didn’t know how. It broke my heart because I loved him so much and knew he needed me, but I just couldn’t reach him.
Everything I read pointed to ADHD and autism.
AUTISM? What? J talked, but he was a bit quiet. He hated change, liked being alone, obsessed over certain things (at one point, dinosaurs, now it’s cars and video games). Other things sounded like him too. I never imagined having a child with autism, but then, who does?
The ADHD? I literally laughed as I read through criteria for this.
By the time J was four, he had broken a foot and arm due to not listening and being impulsive. He had cut a finger so badly he needed stitches. (He broke his arm later that week, five days before his fourth birthday, making that week the worst week in my parenting life until his brother’s hospitalization for heart issues). He had basically no attention span. I talked to his preschool teachers, and they agreed.
Getting a second evaluation wasn’t easy. By this point, my husband and I were clearly on different pages on what to do with J. This is common and probably accounts for why so many couples with special needs children eventually separate. It’s hard to get the other parent to agree. He eventually did, but it took two years and my almost filing for divorce before doing so.
J’s second evaluation was right before Thanksgiving 2011. It was meant to be one day, but went into two because he became uncooperative, which the neuropsychologist told me was common. I got the results in the mail on November 23 and sobbed with relief.
The diagnosis was ADHD, combined and traits of Asperger’s Syndrome. (this was 2011, when Asperger’s still existed.) That was later amended to High Functioning Autism (now Level 2 Autism) by his psychiatrist. I was relieved that I finally knew what was going on and what to do with J. This made a lot of sense. It explained his personality- he’s quiet, and if he doesn’t know you, he probably won’t talk to you. I have to prompt him to speak to people. He took a long time to understand humor, but now that he does, he’s hilarious, with a very dry sense of humor. He’s very smart and asks a million questions a day. He prefers to hang out by himself but has gotten so much better with making friends.
Now that we had a diagnosis, the next thing I tackled was treatment.
J was only five years old and in the middle of kindergarten. He was having problems sitting still in class when he wasn’t hiding under a table. I got in contact with a program at a local University and he began seeing a therapist to help with his social skills. He also began taking medication. That was a difficult decision to make, but he clearly needed it. As the medication began to kick in and therapy began to help, we began to see improvement. J stopped being so aggressive, was able to sit and engage in school and actually started having fun again.
Over the years, he has switched meds, gone through group therapy and changed medical providers. He has come a long way since kindergarten. He just finished the ninth grade. He has an IEP for school and does well with that. There were bumps in the road in elementary and middle school, but nothing is perfect. His middle and high school have been great with him, even during a global pandemic that shut down almost every school in the country. I have always made sure he knows that I love him exactly the way he is and that I have his back- always.
One big thing I forgot during this time was taking care of myself. I forgot how important this is! I had to relearn this. I was stressed out that I lost and gained weight. I developed Type 2 Diabetes, and had a small stroke in 2013. That was a wakeup call to start taking care of myself more, and I have done so ever since. I even stopped drinking in 2017 as it became a huge problem in my life. Today, I enjoy meditation, yoga, listening to music and podcasts, reading and coloring. And I no longer have diabetes.
What I’ve learned about selfcare as a special needs parent:
- Take time for yourself. This may sound difficult, but even 10 minutes a day is better than nothing. Listen to music, read a book, watch a few videos on YouTube.
- Get support. Seek out support in your family or friends, and if you can’t find support there, try finding support online. There are many support groups on Facebook, websites, etc. You aren’t alone in your journey.
- Get your feelings out. Journal, exercise, talk, whatever you need to do. Parenting is rough, no matter how anyone puts it. When special needs are thrown in, it gets harder. Don’t let your feelings sit inside you.
- KNOW YOUR CHILD. This helps in a million ways. Knowing your child’s triggers, foods they WILL eat, etc. will be helpful in many situations. Your child will be glad you know them so well and it will help them feel loved. Support them no matter what.
Special needs parenting is rough. It’s not all rainbows and flowers, but I have learned so much about myself along the way. J has been my tour guide through special needs territory.
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I am so glad that you got the proper diagnoses for your son and that you are taking care of yourself as well! My son is 12 and diagnosed with ASD and mood disorder so I totally understand the stress. Thank you so much for sharing your journey!