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What No One Tells You About Raising a Child with Special Needs

I was raised to not say “it’s not fair.” Let me rephrase, I was taught not to say “it’s not fair.” The truth is, life isn’t fair and it will likely NEVER be fair and that is okay. Now before I get some hate, I am not going to start this off by saying “it’s not fair I have a child with special needs.” That is NOT where this is going and that has never been a thought that crossed my mind and that is the truth.

I feel like there should’ve been a manual or some sort of guide that gets delivered to you the day you find out you’re expecting. 9 to 10 months to take information and absorb it as much as possible seems like a good amount of time. In my case, it was 6 months. Still, something is better than nothing. I think there should be another manual that comes with raising a child with special needs (superpowers). There are so many hidden surprises in raising a child with superpowers. Nothing really prepares you for it and for some reason it’s all hush-hush as if talking about special needs is taboo. Well, I am here to tell you, it’s not. So let’s get to it.

  1. You learn a few new languages.

I don’t mean Spanish or French. In terms of spoken languages, you’re likely to pick up more Latin than anything. Medical terminology is rooted in Latin and medical terms become almost like your second language- fluent and fluid. You also learn another language and that is the language of love. You learn to express love in a way that may be very new to you and more importantly, it is a language your little one speaks too. This isn’t a made-up language. It’s more about body language and tone. You speak with hugs or a calm tone. A high five may be more than what it appears if your little one is sensitive to touch. Your little one may be deaf or hard of hearing and “I love you” may be more than just a sign. The certain squeezing of a hand may translate differently to a child who has a vision impairment or a child with a cognitive disorder. You learn a new language and quite a few of them.

2. You will compare your child to others.

It is inevitable. You will do it time and again. Parents with children who do not have special needs find themselves comparing their child to his or her siblings. Why and how is this any different? When you stop focusing on how far they’ve come and become hyper-focused on how far they still have to go, you will find yourself unhappy. You’ll find those thoughts starting to eat at you. Nevertheless, the comparison is normal- although I will admit, it is also the thief of joy.

3. Doctors, Specialists, and Therapies… OH MY!

I didn’t think anything could prepare me for the number of appointments we had in the first 3 years. I know insurance was not happy with us We had multiple letters telling us that Mark reached his maximum appointment limit in a few specialist areas. Even in the NICU, I was surprised by the number of doctors and therapists we talked to on a daily basis. To echo the language point- each specialty and therapy have their own language and sometimes they don’t translate from one specialty to another (an example of this is when I told the urgent care doctor that Mark had a lung condition called BPD. She looked at me REALLY confused, laughed and asked if he had Borderline Personality Disorder). There were times we had 7 appointments in a single week and for as much as I love my son’s pediatrician (he was my pediatrician), I was so tired of seeing him.

4. Speaking of Insurance, get ready to go to war with your insurance.

I cannot stress this enough, keep your bills. Keep your receipts. Know your benefits plan and if you don’t call your insurance company and ask for a copy of your coverage. Those hospitals, doctors, specialties, and therapies will charge you an arm and a leg for appointments and sometimes your insurance will overlook the claims, or try to tell you that an appointment, medication, or DME (durable medical equipment) is simply not covered. I will never forget my 7th-grade engineering teacher in middle school. On the first day of class, we wrote down CYR or Cover Your Rear. Which I later learned meant something similar, just a word switched out. To put into perspective, Mark’s NICU bill was roughly $5.8 million. Thanks to insurance and me going to war for almost a year (so to speak) with them, the bill was covered between his primary and secondary insurances. Also important to mention, talk to case management and look into getting secondary insurance. Even if your child doesn’t “qualify” for medical necessity or “disabled”, most secondary coverage plans are offered at more affordable rates. Of course, this varies from state to state.

5. Be patient with yourself and your child

As I mentioned earlier, there really isn’t a manual for everything parenting-related. Some books try and are incredible, but the moment you become a parent it can feel like you’re being thrown to the wolves. I want to clarify that is parenting in general. That does not include the learning curve of learning all things of your child’s superpower. It is a learning experience in itself. I think I mentioned this in another blog post. It all requires patience and that language you’ll learn over time.

6. Show Yourself Some Grace

There isn’t a single day I don’t feel immense guilt, shame, and fear. I feel guilty for everything that happened during the pregnancy. I felt guilty for the feelings I experienced in the NICU. I felt shame for some of the thoughts I had when it came to my ability as a mom. I am afraid that I may not be the best mother for my son. I am fearful of what the future may hold for him. I was afraid during my pregnancy, after that 20-week scan. I was scared in the NICU. I still feel each and every one of these emotions almost on a daily basis. When things get to where you are questioning yourself and your feelings and you feel like you haven’t done enough or aren’t doing something right, just remember to show yourself a little love. Show yourself forgiveness. Show yourself some grace because you are the absolute BEST parent for your child and no amount of guilt, shame, or fear is going to change that.

7. You are going to get a lot of looks and questions (and not all of them are going to be good)

What is his diagnosis? What medications is he taking? What appointments does he have this week? Who is his doctor? What is wrong with him? Is he always this sweet? Why does he have to wear that brace? Why does he have a scar on his head? Does he always cheer when he is that happy? What happened to him? Why doesn’t he talk much? Why is he in that cast? Will he always walk that way? Will he ever be fixed?

It never stops. It is never-ending and this goes back to showing yourself some grace because let’s face it… you will be overwhelmed and when getting hit with so many questions. Whether it is negativity, rudeness, or perhaps genuine curiosity, you begin to break a little at a time. Or maybe that is just me.

8. You will feel isolated

There are very few instances I can honestly say that I have bonded with people who have children with special needs. I think this is mainly because my interactions with their parents have been in waiting rooms or maybe the parent pick-up line at my son’s school. The point is, there aren’t a bunch of playdates being scheduled for children with special needs right now seeing as there is a pandemic and we happen to be in the middle of it. Not to mention, the term “special needs” goes beyond conditions you can see with the naked eye. Some children are immunocompromised or immunosuppressed like my son Mark. Let’s not forget that many of our scheduling conflicts have to do with overlapping those many appointments I mentioned earlier.

You may not feel like there are people to talk to, or maybe you feel that people don’t or won’t understand. It is taxing and it takes its toll on mental and emotional health. This is one of the many reasons I decided to start this blog. If it never goes anywhere, that is fine. I didn’t do this to make a buck or to put my name out there. Instead, I simply did it so that you (or whoever else reads this) don’t feel alone or isolated.

9. You are a force to be reckoned with

Whether you are a fierce mama bear or a papa bear, let it be known that you are a force to be reckoned with. You were blessed (not just given or handed or dealt) with the life of raising a child with special needs. Our children have superpowers. Some abilities come from within themselves and other traits are learned- such as compassion, understanding, and acceptance.

Your child will lean on you to guide them through what is already a difficult journey known as life. They will turn to you to protect them, make decisions that hold their best interest at heart, and love them when they are going through trenches of their own. You will be their Northern Star and they will be the sun which your world revolves. They say Mother Nature is the most powerful and unforgiving force. No wonder she bears the term Mother. Because as a parent, you are the very same when it comes to your child(ren).

10. You are allowed to grieve for the life you thought you would have.

But don’t forget to celebrate the life you have. I would be lying if I said I didn’t experience a sense of grief. Pregnancy is supposed to be planned from beginning to end. Scheduled appointments during pregnancy, you’re on that exclusive new daycare’s waitlist and perhaps you have visions of future family vacations and athletic scholarships dancing in your head like the sugar plum fairies. Having a child with special needs doesn’t stop any of that. It simply changes it. Perhaps you feel like your plans have been thrown out the window. Now they’re dancing like a plastic bag in the wind on the side of the interstate, and you’re allowed to be sad about that. Your sense of normalcy and the future you envisioned is changing and it’s unpredictable. You can grieve for that. But don’t let that take away from the silver lining of your situation. You have a gift. Life very rarely goes the way we want it to.

As I mentioned earlier, life is full of lessons. Sometimes this is a lesson in slowing down and not getting ahead of ourselves. Maybe it’s a little reminder that your child is going to be who they were meant to be and that you don’t get to live vicariously through them. You can grieve for the life you planned for, so long as you embrace the new life you have.

If there is anything I have learned through my journey with my son who has superpowers, is that life has a funny way of telling you to take a left instead of a right at the light. You end up in the same place, the journey is just a little different and life is much more beautiful that way.