“I never planned to be a mom of a child, much less two children, with special needs. But few actually do. We take the circumstances we are given and do our best with them.
With my son and oldest child, Alex, I knew something was different with him when he was about two and a half. We were sitting in the bathroom, working on potty training. I was sitting on the tub next to him as we waited. And I just got this feeling he would be different from the typical kid. I wasn’t sure what to do with that feeling, but I held on to it, waiting to see what that difference might be. A few months later, he was diagnosed with a speech delay and we started speech therapy. Every week, his dad (my ex-husband) and I would meet up at the Children’s Hospital Center and he would do his speech therapy as we watched on a computer screen from another room. Progress was slow and frustrating at times, but it was still progress. Yet, that feeling was still in the back of my mind.
We contacted our local school district to ask about preschool, thinking the extra socialization could help. We asked about an IEP and they did a screening to see if he qualified. They came back with speech and development delays. He qualified and we started the process of an IEP and then starting preschool. I was surprised by the development delay they stated. I wasn’t expecting him to be so behind in several areas it warranted a listing on the IEP. Was this my fault? Did I do something wrong? Did I not do something I should have been doing? I felt guilty, like I had failed my own son. That feeling I had about him being different still stayed in the back of my mind.
I still remember that day it all changed. Alex was three and a half by this point. His dad and I were sitting with him in the waiting room, waiting for his time in speech therapy. He was hyper, even more than usual. He was climbing over and under chairs, not listening to us when we would tell him to stop, unable to sit still for longer than a few seconds. We looked at each other and knew. Alex had all of the textbook signs for ADHD. We had seen it for a while, but never at this level. It felt like the pieces of a puzzle falling into place. We agreed he needed to be tested. We knew if he did have ADHD, having that paperwork with the official diagnosis would give us access to more resources for him. That feeling was no longer in the back of my mind. I knew.
I called the Children’s Hospital Behavioral Center and set up the appointments needed. We knew it would take time and the sooner we could get things moving, the better for Alex. What surprised me most was the pushback I received from my friends. They told me, ‘He is a kid. He’s too young to get an accurate diagnosis if he does.’ ‘He’s being a kid. Let him be a kid. Stop trying to force medicine down his throat.’ ‘They won’t give you a diagnosis. You’re wasting your time.’ I was crushed. We didn’t want a diagnosis in order to medicate him. We wanted to know so we could help him. I ignored them. His dad and I were on the same page and our son was what was important here. I continued on with the appointments. They have very strict guidelines for a child his age to be diagnosed with ADHD. We were surprised by the list, but I trusted my instinct and knew I was doing the right thing. Several months later, we got the answer. He checked every box for a diagnosis of ADHD Combined Type. I felt relief. Relief because I knew I was right. Relief because now we could get him the additional help he would need to learn to manage his ADHD and be able to enjoy his life.
We did eventually start him on medication when he turned six. It had reached a point where it felt like the next logical step for him. It has helped a lot and we have had to tweak the dosage as he gets older. But by realizing he was not typical early on and not hiding our heads in the sand and denying it, he has had a better time in school and activities than if we left the ADHD unchecked. Things were looking good for him, for me, for us. But then life leads you down a far different path than you expected.
I was dating this wonderful guy and I found myself unexpectedly pregnant. We were scared. Then we were excited. But I was also worried. I was in my early 30s and had that feeling there was something wrong with the baby. I told my parents and boyfriend about this fear, but they all assured me everything was fine. We had strong heartbeats at every appointment.
We made a special gender reveal ultrasound appointment so we could bring Alex. We wanted to find out the gender together, and I didn’t want him at a medical appointment just to be safe. They showed Alex all of the different parts of the baby: the head, the legs, the arms, the beating heart. And our baby was a girl! Alex cried because he wanted a brother, but the tears were short-lived. He was soon excited again because he was a big brother.
A month later was the 20-week anatomy scan. They confirmed the gender and told us a doctor would need to read the ultrasound and would let us know soon. She had not given any indication anything was wrong, and I stopped worrying. At my next OBGYN appointment, I was told they could not find a nasal bone on the anatomy scan and this is a soft marker for Down syndrome. My heart sank. I could barely remember what else she had said, aside from referring us to a Level 2 ultrasound. I barely made it to my car before I burst into tears. I was scared. Two children with special needs? Would I be able to be a good mom to both? I didn’t even know what to expect with Down syndrome. With ADHD, I had family and friends with it. I knew what to expect. But this? This was unknown and the unknown scared me.
A week and a half later, we had our Level 2 ultrasound. It had the same results, so we opted for an amniocentesis to give us a proper Yes/No answer. The next day we got the call: results show she has Trisomy 21, better known as Down syndrome. We cried a lot that day. We cried for the fear we had in the unknown. We cried for hopes we had for a normal childhood for our daughter. We cried for our daughter, worried about what struggles she might face. We told our friends and family and the support poured in. The ‘I have a loved one with Down syndrome’ was far more numerous than we expected. The love never wavered.
Three months later, Mary was born, and the only feelings that day were happiness, excitement, and love. Alex was very excited to meet his baby sister and asked to hold her every chance he got. He became her favorite person very quickly and I believe she became his. It’s a very close bond they still have to this day, despite being six years apart in age.
I am not going to lie and say it has been easy. It hasn’t. Alex having ADHD means regular doctor visits for his med checks, extra appointments with the school to check in on his progress, and a lot of extra patience as he learns to control his impulsivity. Mary having Down syndrome means a lot of doctor appointments with various departments to check her health, bi-weekly early intervention therapies to help keep her progressing, more illnesses that last longer than usual, and overall worry about how the world will treat her.
But there are some things that make it all worth it. The hugs and kisses from Mary whenever she feels affectionate will melt your heart. Hearing Alex talk about something he is very passionate about can be both exhausting and heartening. Watching Alex try to teach Mary the rules of play sword fighting is both adorable and funny as he tries and she just wants to sword fight. My favorite thing is watching them sit together as he reads her a book or they watch a show together.
I still have worries about their futures. It’s still unknown and I still don’t like unknown. But my children are known. And they are loved. And we can do this.
The thing I want people to know is special needs do not have to be a scary thing. Yes, it’s different, but probably not as different as you think. And soon, that difference becomes routine and normal. You are stronger than you think. And it’s okay to ask for help. A parent of a child with special needs does not become a super-parent overnight. They are a parent doing the best they can for the child or children they love.”
This story was submitted to Love What Matters by Bryan and Lissa Burke from Cincinnati, Ohio. You can follow their journey on Instagram and their website. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.
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