The Emotional Rollercoaster of Parenting a Child With Special Needs

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Recently, we’ve been working with our 5 year old daughter on understanding the difference between daytime and night time. She used to wake up almost every night in the middle of the night, and that would turn into hours of meltdowns which ultimately resulted in a lack of sleep for both of us. In an effort to not lose my sanity completely, I finally gave in one night and brought her into our bed.

Before you start to judge my parenting skills in your own mind, let me just tell you that prior to this moment, I was 100% against ever letting my child sleep in my bed. I’ll even shamefully admit that I internally judged other parents who allowed this. So I get where you’re coming from if your reaction is not one of empathy in this moment.

parenting child with special needs

Both fortunately and unfortunately for me, my daughter instantly went back to sleep in our bed and I even enjoyed getting to cuddle with her. Sadly, this was not to be a one time occurrence. What had started in my mind as a single night, where I would catch up on some much needed sleep, quickly turned into a nightly routine. Each night my daughter would fall asleep in her bed, only to wake up around 1am crying for me. I would get up and bring her into our room and back to sleep we both went.

So back to the present, we’ve been working really hard the last several months to get our daughter to sleep all night in her own bed. The success of this has mostly come from helping her understand that when it’s still dark out, it’s still night time and at night time we sleep in our own bed. Ive been blessed that most nights she’s been sleeping until about 5:30 or 6am, which is when I typically get up anyway. On the nights she has woken up and wanted to come in my bed, I remind her it’s still night time and with some minor back and forth, she goes back to sleep.

On the weekends, like most Americans, we like to sleep in until 7am or so, but by 6am the sun is up. Our solution to grabbing that extra hour of sleep after the sun rises and our daughter gets up? Youtube! That’s right, bad parenting moment number 2, we gave our 5 year old an old iPhone we no longer use so that she can watch Youtube while we sleep a bit longer.

Hey, sometimes you’ve just gotta do what you’ve gotta do. 

Before I continue, it’s important I mention that my husband travels for work about 80% of the year. He’s frequently gone anywhere from about 3-10 days, home for a few days and then gone again. At the moment, he’s been away for work about 5 days, so this week I get to play single mom.

mother and daughter

It’s Saturday, so sleeping until at least 6am really shouldn’t be an issue. Sadly, the life of a parent is not as predictable as the sunrise. 4am comes around and my daughter is wide awake! I manage to convince her to rest in her room for about 30 minutes by showing her it’s still night time out, before I cave and let her watch Youtube early.

As 7am rolls around, so does the realization that my daughter has been watching Youtube for close to 3 hours now and I get to start my day off feeling like a bad mom. I roll out of bed, get myself and my daughter ready (never an easy task), and head downstairs to make breakfast.

My daughter has Cerebral Palsy (CP), Sensory Processing Disorder (SPD), Seizures (though we have been fortunate to be seizure free with medication for a few years now) and several other yet to be labeled challenges. I’ll save you the long version but after a perfect pregnancy, our daughter had an in-utero stroke at birth. We spent a total of 11 days in the NICU, the first 3 of which we had no idea what was wrong with our daughter. When we did finally receive her diagnosis, it was done in the worst way possible. The hospital neurologist, who we nicknamed Dr. Doom and Gloom, painted a very scary and dreary picture of how our child would grow up. At only 3 days old we were bluntly told that a large portion of her brain was dead, she would likely always struggle to walk and use the right side of her body, and they had no idea what her cognitive function would be.

Devastated doesn’t even begin to cover it. The first moments of motherhood are already so overwhelming and this news was almost impossible to process. Thoughts of “why me? Why her? Why us?” along with the terrible feeling of thinking it was maybe somehow my fault. That I ate the wrong food or didn’t get enough exercise. Truth be told, I didn’t even know babies could have strokes! I had little knowledge of CP and we didn’t know any friends or family who had a child with special needs.

special needs mom

With this multitude of conditions, some which we learned at birth and others later on, we were behind on almost all of her milestones. She never crawled and didn’t walk until she was about 2 1/2 years old. The amazing thing is, that even with all of these setbacks, at 4 years old now she’s able to go up and down our stairs on her own (while holding the railing), but today she did the entire staircase without holding onto anything! I was both amazed how much her balance has improved and terrified that she would fall and I wouldn’t be fast enough to catch her. My own fear or not though, this is a huge milestone celebration for us! While most parents of mainstream kids might just naturally assume that their child will do this, it wasn’t even an option that crossed my mind. To say I was on could 9, proud parent moment, would be an understatement.

Now comes one of my redeeming qualities. I make a hot breakfast for her almost every day! #ParentingWin

I’ve already mentioned it’s Saturday and every Saturday at 10am, my daughter goes to a dance class. As a side note, I was very fortunate to find a dance class that was willing to work with her different abilities and happy to have us in their program.

Back to today though, we actually have a pretty good start to our morning after recovering from the 4am wakeup. Breakfast goes smoothly instead of the usual pestering her to eat for 2 hours. I get her hair done with only a minimal amount of distress, if you have a daughter you know what I mean here, and we actually manage to leave the house on time! Which is also not usually an easy task.

dance class

Back down the emotional hill however; is the short car ride to dance class. We get in the car in a great mood and less than 10 minutes later we’re getting out of the car with me tossing out empty threats about not going into class and going back home instead. Never a proud parenting moment but I’ll sadly admit that I am an empty threat-aholic. One short and very public parking lot argument later, I manage to get my daughter into dance class only a few minutes after it’s started.

I now have an hour where I don’t have to give 100% of my focus to my daughter. I still have to stay in the lobby of the dance studio so it’s not really an hour of free time, but I get to sit with other adults and surf Facebook without interruption, so that’s typically a high for me.

As class ends and my daughter and I head to my car, I’m thankful to find that at this moment, she’s in a good mood. After dance class is always hit or miss. Sometimes, like today, she is all smiles and actually listens pretty well; while other days are instant meltdowns that leave me feeling humiliated in front of the other parents.

So back my high emotional moment where my daughter is now in a good mood. I think quickly on my feet about how I can really make the most of this good mood, since I have several more days before my husband comes back into town. We’re low on groceries and I know my daughter likes to go to the store, though she often makes me regret bringing her, so I decide that we will stop at the store on the way home.

She’s all smiles, even lets me sit her in the cart without a fight, and we actually have a pleasant shopping experience. So much so in fact that when she sees the balloons and asks for one, I decide to reward her good behavior and get it for her. Sadly, just like a real rollercoaster, you can only climb so high before your coaster car glides over the edge and you begin plummeting back toward the earth.

What started as a reward quickly turns into a driving hazard and a game of “laugh and don’t listen to mommy” while I attempt to navigate traffic with a giant balloon floating around my car. Any attempt on my part to get my daughter to keep the balloon out of my line of sight, is rewarded with her kicking my seat, screaming at me, pushing the balloon more into my way, etc. My frustration grows but as I get the car parked in the garage, we seem to have plateaued a bit.

Now we’re inside the house and it’s just about 12pm. I have 2 choices. Try and spend the next 2 hours feeding my daughter lunch and fighting with her about taking a nap until it actually becomes too late for her to nap at all and we both end up grumpy, or skip lunch & go straight toward the nap. She had a big breakfast only a few hours ago so I decide to try for just the nap. I know that will still be a battle but at least if we start earlier, I might actually win with enough time to get an hour or so of peace.

Five Things To Do During Nap Time

To my surprise, getting her up to her room and even out of her dance clothes turns out to be pretty easy! I’m riding high again and in a good mood as I give her a few hugs and kisses and tuck her in for her nap. I knew it was too good to be true though and boy was I right. I’ll spare you all the angry and frustrated details but leave you with this… Over an hour later and at one of my lowest points of the day, she’s finally asleep at 1:30pm and I get to celebrate by eating my lunch in peace! Truth be told she’s really outgrowing naps at this point but I’ll admit to selfishly not being ready myself to let her give up nap time.

I let her nap for about 2 hours and I use the time to clean up around the house, organize, get some work and laundry done, you know… mom chores. I wake her up at 3:30pm to find her in a surprisingly good mood and decide on the spot to see if she wants go to the park for an hour. I don’t take her to park often as we live in a place where most of the year it’s too hot to really go out an enjoy it. I also don’t personally love the outdoors but that makes me feel like bad mom, so I’m really trying to make more of an effort to let her get out and play. Now that it’s spring here, it’s under 70 and the perfect weather to spend an hour or so outside.

She’s thrilled by this idea and getting ready to go proves to not only be easy, but also a low stress activity. I want to drive to the park (it’s about a 15 minute walk away since her CP means that she can’t walk very fast) but she insists on walking and I cave with her promise to behave and listen. High again we have a fun time at the park where I push her in a swing for an hour, but even while I’m having fun, I’m also having an internal mental battle.

My 5 year old is in the baby swing at the park. You know, the one that has leg holes and a full torso surround so you can put a baby in there and they won’t fall out as you push them. It’s not safe for my daughter to swing on the older, flat black swings, as there is nothing to keep her from falling and she can’t hold on well on her right side. This leaves the only swing option, as the baby swing. We’re lucky in a sense that she’s a very small 5 year old and actually still fits in the baby swing, or I’m quite certain I would be describing a meltdown right now.

playing at the park

At first, we’re the only family at the park and I’m having fun just basking in my daughter’s happiness as I push her swing. I mentioned it was really nice out though so as you would expect, other families begin to show up at the park as well. Most of these families have kids around my daughters age and before too long, it’s back to feeling low again for me. This time though it’s not because of the dynamics between my daughter and me.

I know we’re not supposed to compare our child to someone else, but no matter how hard I try not to, I still do it. I see a kid my daughter’s age or even younger who can ride a tricycle (my daughter can’t) or who can climb a jungle gym (mine can’t do that either) or swing in a standard swing, and I mentally plummet back into a low spot. This time it’s not because of an argument or fruition, it’s envy.

I envy these parents who don’t have to wonder if their child will ever be able to do these things. These parents have 100% confidence that their child will. To them, it’s a natural progression of their child’s life. But not for us. As amazing and strong willed and determined as my daughter is, and as much as I try to never put a boundary on her and assume she can’t do something; the truth is that she may never actually be able to climb a jungle gym or go across the monkey bars.

It’s trivial really because these types of activities don’t determine who she will be at all. It’s just some kids having fun. I know one million percent that I am SO blessed to have her in my life. My daughter is by far the best thing that has ever happened to me. She’s made me a better person in so many ways that I could never list them all. She’s smart and determined and beautiful. She radiates happiness and at only 5 years old she has a deeper understanding of love than most adults.

I am so grateful to have her in my life and as you’re reading this, I don’t want you to mistake my envy in moments like these, for anything other than the fact that I am human. I don’t need or want any pity, in fact, most of the time I’m the lucky the one! But that irrational part of ourselves always thinks the grass is greener on the other side.

In the end, we have our fun at the park and make it back home with a minimal amount of coercion. We have a relatively pleasant dinner together and even hang out on the couch before it’s time to get ready for bed. Our bedtime routine is a rollercoaster all on its own, probably much like yours is, but we manage to fit in a little cuddle time before I actually get her into her own bed. A few more ups and downs, hugs and kisses, and by about 8:15pm she’s asleep.

special needs mom

My work for today isn’t over. There’s still laundry to fold, dishes to wash and work to be done, all before I turn into bed myself around 10pm. I know I’m not alone. I’m not the only mom of a child with special needs or even mainstream, that feels this way; though I do think that when parenting a child with special needs, our rollercoaster tends to have a few more twists and turns than the rides other parents might be on. In the end though, we’re all on the ride. Sometimes we’re at the top of our game and other times we feel like total failures.

As I ride this emotional roller coaster, the thing that helps keep me sane and keep me going, is making sure that I take time for myself. That being a special needs mom is not what defines who I am, it’s just a part of my life.

 

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Chantelle Paige Turner

Stronger Mommy

Special Needs: How to Win the Game of a Special Needs Diagnosis

Chantelle Turner began her online entrepreneur journey shortly after having her first child. During this time she was also working hard to get her daughter the medical services and support she needs, due to complications at birth. As she found ways to help her own daughter, she realized many other parents who had kids with special needs, were not getting the support they needed either. With her learned internet and marketing skills, she founded her company; Stronger Mommy. Stronger Mommy aims to ‘Empower parents who have kids with special needs, to live a life beyond limits’. Stronger Mommy does this by helping special needs parents focus on taking care of themselves so they can then get the resources, services, support and community they need for their kids. In less than 1 year, Chantelle built a community of over 2900 special needs parents, who she now empowers and supports; and that community continues to grow daily.

 

 

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