Journey of Acceptance: My New Normal as a Special Needs Mom

When I became pregnant with my first son, I was already 34 years old, and considered a “geriatric mother” at the OB/GYN, since I’d be 35 when my first child was due. Even as an “older” mother, I didn’t think to myself that I was ready for motherhood. I just gave into the idea of it, thinking that I was as ready as I’d ever be, and (let’s be honest) time was ticking on my ability to choose to be. I had no idea that it would become the single most challenging and lonely experience I would ever have up to this point in my life.

I had a shadow of an idea of the difficulties, but despite other mothers experiencing their highs and lows, they all seemed incredibly joyful and grateful for their little ones. So I thought, surely the challenges would all be worth it. I never even considered the possibility that my child could be born with a disability.

My baby boy came six weeks early at 4.0 lbs, and spent a bit of time in the NICU. Seeing his tiny body in those early days in the hospital made my heart swell. He’s a survivor, I thought proudly, feeling blessed and optimistic that although he was premature, he’d be just fine. It wasn’t until his “terrible-twos” started early at the year-and-a-half mark that I began to worry. He was still not walking on his own, his speech development seemed to be regressing, and he just wouldn’t stop crying. It turned out that it wasn’t just my imagination; I wasn’t spiraling into negativity and victimhood. He really was a more difficult child than most. He was later diagnosed with Autism Spectrum Disorder and ADHD at age four. 

Before I knew any better, I believed I was up for the challenge. I was equipped with books, articles, and personal stories from friends about best practices in raising a baby. I knew I wanted to feed him a healthy diet, make sure he got lots of developmental play time, and socialize him as much as possible with other children. I was researching the strategies of encouraging him to become an early reader and the importance of giving the least amount of screentime as possible.

I sort of had to throw all that out the window, as everything I planned just completely and utterly failed. He was always sick - more so than other kids, even needing to be hospitalized a few times. He was hurting himself, banging his head on the wall. He destroyed everything in sight for years, and he still does this to a degree. His potty training did not go well to say the least. (I won't go into detail here, but let's just say I have a bit of PTSD around number 2 accidents now.) He didn’t sleep well, taking too long to fall asleep, waking up multiple times in the night, and waking up too early in the morning. This would then lead to him being too tired and irritable during the day.

I became completely exhausted. The once full-of-energy persona I’d embodied was completely depleted, and optimism gave way to numbness and feeling jaded. I had no energy to do anything but take care of this child. All other areas of my life suffered as my needs took the backseat. I was in complete survival mode. 

For a really long time, I felt completely alone in the experience. I thought that if I shared my difficulties, I was going to be seen as a complainer. All moms had insurmountable hardships, and so many of my friends and family seemed to be able to do it all with such grace and gratitude. Why was I the only one secretly spiraling down into negativity and defeat? What was wrong with me? So what did I do instead of sharing these darker thoughts? I hid them. I put on a smile and forced myself to forge ahead, pretty much in complete denial of the hardships I was going through. If I couldn’t do this motherhood thing with grace, then at least I could pretend to.

Then, the pandemic hit and we were all left alone; our sadness and loneliness amplifying all that which was wrong within ourselves. We even moved states for my husband’s work at this time, taking us further away from family and friends. My son’s disability symptoms became worse and more pronounced, and nothing I was doing or could do for him seemed to be helping much. Appointment after appointment with doctors and therapists also helped very little. I did what I could outside of that - any alternative therapy I could find, any nutritional or detoxifying supplement that could help, we tried it. I dove deeply into trying to “fix” my child like a crazed person. I felt I had to, because he was a ticking time bomb of constant tantrums, violent outbursts, destructiveness and refusals. It could not go on like this forever because if it did, I might drown and face certain death from the crushing weight of burden… or so it felt like I would. And my husband and younger son would be pulled under with me too.

And it was true, my health suffered both physically and mentally. I didn’t just take the back seat in my life, I laid dead in the trunk. Every inch of my body constantly ached and exhaustion overcame me at every turn. My immune system was so compromised I was sick 80% of the time. I was so depressed I couldn’t remember what it felt like to genuinely smile. I forgot how to converse with other adults without mentioning motherhood and my son, and getting teary eyed. I became a walking, talking sob story, feeling sorry for my son’s lot, and most of all, for myself. I couldn’t recognize the person I had become when I looked in the mirror, as if I had aged ten years in the span of four.  

By the time my son turned five, I had reached a sad point in my health where my waistline was overexpanded, my blood-sugar dips and spikes became very pronounced, and I was having strong heart palpitations when I hit the gym. I felt scared. If I continued down this morbid path, what would my son do without me to support him? For the love of my son, I told myself, I needed to turn things around. I made a commitment to build my health back up, but I knew that I needed to do it gently, taking the long and patient path. I already tried my old health tricks that I learned in my 20s and 30s of hitting the gym too hard and intermittent fasting, and they turned out to be dangerous at the state I was in and in my 40s. 

During the past two years I slowly started putting myself first. I hunkered down and unabashedly rested when I needed to. I invested in quality supplements for myself and for my sons. I learned to strength train at the gym at my own pace. I rediscovered my personal nutritional needs for my age and where I am. 

I let go of the control I had over “fixing” my son. He didn’t need fixing, he just needed my love and support - a support I wasn’t going to be able to give him if I wasn’t supporting myself. My son is now almost seven years old, and he has come a long way since his multiple-times-a-day violent tantrums. He is slowly becoming more self-sufficient and confident. He’s doing better in school with much less refusals and elopements. He’s even starting to make some modest progress in friendships and social life, as his mood swings have somewhat stabilized. I can’t claim that everything is perfect now because like everyone else, we still have our ups and downs. But he’s finally starting to blossom into himself, and observing these positive changes in him makes my heart sing. 

I believe that things turned around because I finally learned to put myself first. I let go of controlling the situation, over-focusing on trying to make it go a certain way. Instead I found a way to focus on my own needs. I finally found that grace I was looking for.