little girl with backpack on

This year my daughter turns 3. She ages out of the comfort and security we’ve come to know with Early Intervention, and enters the world of school. Preschool looms on our horizon, and to me she is still my baby.

little girl with backpack on

Because you are a special needs preschool teacher, I know her delays are not foreign to you. I know you have many strategies in your toolbox to help her continue to grow and learn. Please do not lose patience if I ask why you chose the one you did. I’m not questioning your education, I want to learn how to help her too.

As she struggles to take off her coat or put a shoe on after it’s fallen off, please remember she was unbuckled from her rear-facing car seat this morning. Please remember she has only been walking for six months. And please be patient when her little fingers don’t have the coordination for buttons or zippers yet.

As she cries or hits when she doesn’t want to do something, please remember she doesn’t have words to express herself, and I know she must be so frustrated. Please correct her behavior, and guide her toward expressing herself with words and signs like we do at home.

As she proudly uses her utensils to eat her own lunch, please gently wipe her face, covered in applesauce, as she beams with pride that she’s a big girl. I know it’s an extra step in your day, but she needs that independence.

As she climbs on her little bus in the afternoon please don’t think I don’t yearn to be the one picking up and dropping her off each day. I’m not absent from her school day because I don’t care. You won’t see me because I have my own class of 25 third graders across town. Please don’t judge her home life based on a glimpse of her day. I am entrusting you with a piece of my heart.

As she walks down the hall, wearing a bookbag as big as she is, please do not underestimate her. She is tiny, but she is strong. Don’t allow her size to become her crutch; she will rise to the expectations given to her. And we’re shooting for the moon.


A Special Needs Mom

Have you seen the first film with a national release to star a person with Down syndrome? Check out the film “Where Hope Grows” today!

Available for purchase on Amazon and iTunes.


“Look up.”

As simple as that. While we were in the midst of this journey, that was the advice my husband gave me. I can’t remember exactly how long we had been living the weird, distant lifestyle, nor where our son was in terms of his recovery. I just know I was having a difficult time managing all the stress, the medical information, the heartache and emotions, and I had to tell him.

After all, he was the only other person in the whole world who was on the same journey as I was. He was the only other person who knew exactly what it felt like to be away from home, in a completely different landscape, away from your other children and waking up every day fearful it will be your last with your sick child.  He was the only one who knew every little detail of what I had been through up to this point.

So I tried to get the words out, probably in a rush as that is what happens when you are so full of anxiety, fear, anger and loneliness. I probably got teary and let those tears fall in the comfort of his presence because that was the only time I was allowed to. In that moment I let down my guard and he could see all of what I was or wasn’t and what was fueling my train of thought. I admitted my weakness. I admitted my worry that I was failing as a parent. I admitted my ignorance in underestimating the severity of the issue. I let him see the broken pieces of me.

He understood. He was broken too.

“I find it helps to look up when you walk down the street.”

Really? It sounded so simple and trivial and kind of odd coming from him. He wasn’t one to be motivational, but in this moment he was.

Look up.

husband and wife sitting on stairs
Boyo Photography

Too often we get so caught up in our journey that we keep our heads down and watch every step we take with care. We keep our eyes focused on the road, our heads too heavy to lift. We forget to look up towards our destination and enjoy the scenery as we pass it — and we will pass it. We need to lift our chins, raise our glances and take a deep breath. We need to let the light from the sun surround us, hug us tightly, and give us the strength to carry on.

We need to look up.

“Wow, you’re amazing.” I hear those words a lot from people. I’m baffled every time. How? I wonder. How do I appear to be so amazing?

Special needs moms are often compared to superheroes, like we’re supernatural. Like we’re doing things that are unthinkable, unheard of. Some people believe we were the chosen parents, that we were only given what we could handle. That children with special needs are given to special parents.

My eyes are outlined most days with dark circles from lack of sleep and stress. I’m always running out the door, positively late for something. I have surely aged, ungracefully, over the past few years. I can see it in pictures.

I’m amazing, they say.

I don’t feel so amazing when my alarm goes off in the morning and I’m certain I haven’t slept yet. I don’t feel amazing when I spend all afternoon on the phone with the insurance company and got nothing else accomplished. I don’t feel amazing while I’m holding my daughter so they can get more blood work from her already overly poked arm. I don’t feel so amazing when I need to choose between play dates and therapy for my daughter.

I don’t feel so amazing while I’m explaining and preparing my 5-year-old for another hospital stay. Or when I have to explain her conditions over and over again to the same people. I don’t feel so amazing when I feel a cold coming on or when I’m sick and I automatically begin to stress because I don’t have time to be sick. There’s no one to step up and step in to help me out. I don’t feel so amazing when my anxiety is overwhelming because I have extreme fears of not being around for my kid.

Amazing, astonishing, astounding, stunning, breathtaking, awesome, sensational, spectacular, extraordinary — just a few other words one might use to describe amazing. Not one of those words resonates with me.

However, in between the moments of what feels like survival some days, underneath my mask and cape, I do feel like a mom. A very determined, often tired mom who behaves just like any mom would given my circumstances. I’m a normal mom doing normal mom things — it just happens that my “normal” is different then yours.

I’m a mom who’s helping their child grow and blossom and thrive, just like you. Motherhood is as unpredictable on my road as it is on yours. The last thing I am is a superhero, expect hopefully through the eyes of my daughter, which would be an honor. I was not given special talents or special armor. I fear, I cry, I laugh just like all moms do.

My daughter does all the work. She’s the real superhero. All I can do is be her mom and cheer her on. That’s the easy part. She’s amazing, I say.

Dear Well-Meaning Doctor,

You saw me struggling to hold it together in your office that day. My son, Davy, was 6 months old, and his many medical needs were taking their toll on me as I navigated my new life as a medical mama

He hardly slept, cried almost constantly, turned blue and choked multiple times a day and had a feeding tube. I was exhausted, and the mom guilt from not being able to balance his needs with the needs of my other three children was wearing me down.

You saw all that, and you made it a point to look me in the eye and ask me how I was handling everything. I saw the concern on your face, and I knew you cared.

“The only way I’m surviving right now is by reminding myself that it won’t always be this way,” I said brightly, trying to pretend I was happy even though I was absolutely miserable.

My parenting mantra that had gotten me through rough patches before was “This too shall pass.” I knew Davy’s situation was unique, but I was applying my mantra to my daily life with him liberally anyway. It was my hope and my saving grace at that point.

Gently, you replied, “You need to realize that it probably will always be this way.”

I was stunned. I wanted to cry, but I didn’t. I got through the rest of the appointment and fell apart the moment I got back in my van.

I know you meant well. I know you were trying to prepare me for what could lie ahead. But you stole a piece of my hope, and it took me months to get it back.

When Davy was 10 months old, we switched to a different health care system. I wish I could take him back to see you again so you could see who he is now. You saw a malnourished, screaming, sickly baby with significant delays. Today, you wouldn’t recognize this sweet, lovable, 2-year-old boy who laughs all the time and loves to give hugs. I can’t go out in public without multiple people swooning over how adorable and personable he is. He’s an amazing little boy who only has mild developmental delays and whose medical concerns are mostly under control at the moment.

I was right. It did get better, and it’s not as hard as it used to be.  

The next time you come across a mom like me, please don’t take away her hope. It might be all she has left. I’m not saying you should lie about a prognosis, but you don’t know what the future holds for her little one. Realistic hope is still hope.

Disassocation: noun
○ separation of normally related mental processes, resulting in one group functioning independently from the rest, leading in extreme cases to disorders.

Every day I lose time — literally. There are days when I remember half of the day. There are other days I can barely remember three hours. When I was a child, my mind was conditioned to blank out, go away and go to a better space while I was being molested by my grandfather. The coping mechanism of dissociation tends to be a lifetime battle. Dissociation is probably one of the hardest things to explain to those who don’t know what it’s like.

Triggers, for me, can be boredom, smells, words, pictures and pretty much anything. What happens when I disassociate? My vision gets hazy, most of the time if I catch it before it progresses. At this point, I can physically ground myself and stay in the present.

Sometimes episodes happen faster than I could possibly catch. The haze takes over and I am lost. It’s like watching a movie of myself. I can still communicate, mostly with short answers and a blank stare on my face.

Most people don’t even notice when I’m disassociating. On the outside, I look “normal.” I hardly smile in general, so my face is neutral and has my normal expressions. I sound disinterested or unenthusiastic about the topic, which isn’t hard for people to understand. I am either unenthusiastic or very passionate about topics.

I don’t know whether my “normal” state is a coping mechanism, where I am stone faced and unenthusiastic as I disassociate, or if it is just a coincidence. I don’t know if I will ever figure the answer out. I do know it’s scary not remembering a good portion of your life.

My sisters often bring up memories of theirs about our childhood, and I’ll have no idea what they are talking about. Apparently we used to have a swingset in our backyard. My sisters have told me we used to play on it every day. I can’t picture the swingset. I don’t even know it existed. It’s become a game I play with myself, when I hear my sisters talk about fond memories of our lives.

Think really hard Nishea. Is there a picture of that in your brain at all?

Most of the time, I can’t remember and it saddens me that I don’t remember the good memories my sisters have of all of us. It’s feeling like your life is not yours. Someone else is controlling what you see, what you don’t, what you remember and what you can’t. It’s a depressing game to play, but I always hope that pushing my memory in that way will surface more memories. I usually end up upset because I can’t remember.

I found that preventative self-care is the best way to combat disassociation. It doesn’t cause it to go away, but it helps lower the hold it has on me. I learned when I’m exhausted or stressed, it causes me to disassociate more often. So I have to make sure I sleep at least six hours a night in order to stay clear throughout the days. (Insomnia gets the best of me most nights.) I have to release the anxiety by lifting heavy weights. Some nights, I have to stay at home and lay on the floor with my dogs.

Every day is different. Different things ground me different days. So recognizing my body and what I need has become an important part of handling my episodes. Disassociation is hard, but it doesn’t have to disrupt your life completely. You just have to learn what makes it better and try to combat what makes it worse with those things.

By 4 p.m., the panic sets in.

I begin to think about dinner, cleaning up, baths, stories, and hopefully bedtime, and I realize yet another day has passed and things don’t feel like they’ve changed much. When my children eventually settle to sleep, my mind will run through all the missed opportunities, all the forms I never quite had time to fill in and all the moments I left my children to entertain themselves. Did I do enough today to help them? Did I do any of the exercises the physiotherapist told me I should? Did I ensure my daughter had her insoles in to correct the turn in her feet? Did I teach them anything or encourage any social skills?

Even if I did something, was it enough?

If I read my children’s speech reports I am reminded of all the times today I forgot to use pictures to reinforce understanding, and why do I suddenly remember all about makaton signs the second my child has fallen asleep?

Then I remind myself I am not a speech and language therapist. Even more important, I am not my child’s speech and language therapist. I am his mum. I can never be “enough” for his speech and language development, as that is not my speciality. What parent can say they honestly do all the exercises with their speech-delayed child all the time?

If I read my child’s physiotherapy report, my heart sinks. We never did those leg strengthening exercises she hates or invented games that require rolling. When I was busy cooking I noticed she was sitting in that “W” shape again and I left her too it. I didn’t do enough. Actually I don’t think I have ever done enough to satisfy her physical needs. I feel guilt about that daily, but then I am sure all parents feel like this sometimes? Maybe it is just me?

I left my nonverbal son to watch videos on his iPad today. Not the most ideal thing, according to therapists I know, but sometimes I just can’t do it all. I even put my two autistic children in the car and went somewhere today without first reading them a social story about it, showing visuals and going through the route on Google Street maps. No brownie points for me today.

The fact is, they survived. I survived. We lived to see another day, and yes I will always feel guilt at what we didn’t do in terms of therapy or research or exercises, but in many other ways I was more than enough for my children today.

mom reading to her two autistic children on ipads

They had more than enough of my time. 

They had more than enough to eat and drink.

They have more than enough toys and technology.

They have more than enough clothes to wear.

They have more than enough access to medical and educational support. 

They have more than enough love.

Fellow special needs mum, remember this: never let any professional make you feel less than enough. Never let your child’s struggles make you feel less-than as a parent. You are enough! Your love, encouragement, support and dedication will be enough. Did you make it through another day? You were enough today, and you will be enough tomorrow.

This post originally appeared on Firefly.

Real People. Real Stories.

150 Million

We face disability, disease and mental illness together.