1. GET TO KNOW US
I’m starting with this to point out that just because a family may be raising a child with special needs doesn’t mean they are any different than any other family, so take time to get to know more about them. With that, and before I get into the basis of this post I am going to share a little about my family so that you have a better better understanding on how blessed we have been with four intelligent young men and how I have been blessed with an amazing and supporting wife who continues to astound me with her warm heart, patience, dedication, love, and daily sacrifices for her family. I know that I would not be able to carry the load alone so I thank God for her every day.
Between the two of us, we have four amazing boys. The oldest is 22, recently married, and is active duty Air Force intelligence. Next would be our 20 y/o who graduated valedictorian, currently on the deans list in college, and soon to be an Army officer. Then we have a 12 y/o who although diagnosed with ADHD he amazes us with his intelligence. He read the entire Harry Potter series before turning five, and currently maintains straight A’s while in all honors classes. Last but not least is our youngest, Matthew, who is 3 y/o. He is the happiest little man in the world and the reason I am writing this post, so now that you know a little about our family let’s get to what I would like to share about raising a child with special needs.
2. ALL DISABILITIES CAN’T BE SEEN
At first glance, people can ever tell that our Matthew is any different from other toddlers. No matter where we go, complete strangers are always making the same comment: “That’s the happiest little boy I have ever seen,” because he always has a smile on his face, but when they get close to him he erupts or hits them. Many times they take it personal and/or feel they have done something wrong, or that we need to do better at teaching him manners. What they don’t realize is that Matthew was born premature and has sensory defensiveness, as well as major delays in his motor, speech, cognitive, and social skills which all add to why he responds this way. It has nothing to do with how we raise him, that specific individual, or anything anyone has done. Unfortunately, it is very hard due to you can’t see his disabilities so in appearance he is just a normal toddler.
3. GETTING A DIAGNOSIS ISN’T EASY
Initially, Matthew was diagnosed with global developmental delays (GDD.) This was soon updated to Autism Spectrum Disorder, only to help our family get additional testing and support, due to our insurance company wouldn’t approve any further testing until they had a diagnosis. We spent the next two years taking Matthew to see more specialists than we even knew existed. All in hopes of determining what was causing his delays. When Matthew was 2 1/2 and still wasn’t able to talk, walk, or crawl the specialists all decided that they needed genetics testing to rule out a few other possibilities. Unfortunately, our insurance denied the testing and sent us a letter saying the following: “Genetics testing has been denied due to a diagnosis will not change ongoing therapy needed.” As you can imagine this was not only upsetting it was heartbreaking for they clearly didn’t understand how important a diagnosis is for our family or any family for that matter. A diagnosis would help us change the way we were approaching his delays, so instead of fighting with the insurance company we took the letter to our pediatrician and the specialists we had been working with and asked for help. If not for their ongoing support and guidance we would probably still be fighting with the insurance company, so we are thankful to: Dr. Alecia Hanes, Eileen Braun, Drew Cratsenberg, Dr. Carlos Bacino, Dr. Klaas Wierenga, and the diagnostic experts at GeneDX because they helped us get the testing needed which led to Matthew’s official diagnosis of “Angelman Syndrome.” I know you are thinking the same thing we did: What is Angelman Syndrome?
It’s a rare genetic disorder that causes disabilities and neurological problems, such as difficulty speaking, balancing and walking. The good news is the main characteristics are: frequent smiles, outbursts of laughter, and happy, excitable personalities.
The great news is that with the diagnosis we can now better prepare ourselves on how to help Matthew in ways we would have never known prior to the diagnosis so again thank you to the aforementioned individuals for their help.
4. YOUR PERCEPTION IS NOT REALITY
Most of us have the perception that it takes a special person to raise a child with special needs when the reality is that a child with special needs inspires you to be a special person. Matthew has changed my entire view on life. In a world where people tend to perceive what someone is like based off of looks, financial status, and/or performance it is only natural to start viewing yourself and others through that same lens. However, having a beautifully sweet and innocent child born with a disability that he didn’t ask for and watching him work so hard to try and perform basic functions such as: standing, walking, trying to talk, etc., quickly broke that lens and now I see life the way it was meant to be seen. As another special needs parent wrote so eloquently: “You don’t know the depths of victory and joy until you see your child with special needs overcoming basic challenges.” For me, it’s been the simplest things, like the way Matthews eyes light up waiting for me to acknowledge when he puts his cup down softly instead of throwing it, the smile on his face when he climbs off furniture without any help, the clapping of his hands after he uses sign language to say “thank you,” or my favorite—the high-pitched dolphin-like sound he makes when he hugs me to say “I love you!” Those moments are when I realize how blessed I am and what life is truly about.
5. WE STRESS ABOUT EVERYTHING
All who know me can attest that I joke all the time and I am a very open person who can talk to anyone because I truly love people. What many don’t know, including my closest friends and family, is that after Matthew’s issues arose, I rarely express my deepest feelings. Instead, I internalize the problems we deal with and swallow them whole, for I feel like that is what what a strong father, husband—a strong man—is supposed to do. I don’t want anyone to know how terrified I am at times because I often worry; Am I helping him too much? Am I not helping him enough? What if I’ve missed something—a treatment or a diagnosis and that window of time to treat it? What about his future? Will he ever drive a car? Will he ever get married? Will he ever be able to live without support or independently? I fear thinking of the hurts he will experience if he doesn’t catch up and is tagged as “different” by other kids in this harsh world. I am scared about finances, but my biggest fear by far is who would care for Matthew if anything were to happen to my wife or me.
6. THERE IS NEVER ENOUGH ENERGY
All parents can attest that parenting is an exhausting endeavor but parenting a child with special needs pushes us to an entirely new level of fatigue. Even if we get a good night’s sleep or have time off, the level of emotional and physical tiredness is always there due to the weight of tending to every one of Matthew’s needs. The hospital and doctors’ visits are multiple times each month instead of a few times each year. The therapy sessions are multiple times each week. Paperwork and bills stack up and spare time is spent catching up on cleaning, working with Matthew in hopes of improving his walking, trying to teach him sign language, or searching the internet in hopes of finding other families experiencing the same things or finding ideas to help him learn. Then there is the time spent advocating for him in the medical and educational systems. The emotional stress of raising a child with special needs has peaks and valleys that seem so much more extreme than those found in regular life and I truly appreciate my employer (Dell, Inc.) for their support and being the epitome of a company that supports the work/life balance. They have allowed me to arrange my schedule around Matthew’s appointments, work from home when needed, and understanding if I need to do rush to an appointment for a last-minute fill-in if my wife isn’t able to.
7. WE ARE OVERLY PROTECTIVE
Due to a fear that something could happen to Matthew since he can’t protect himself the way a so-called “normal” child can. We worry since he can’t say “stop” or “don’t” or that he won’t be able to express this until it’s too late. We worry that people simply won’t understand him and have already experienced the sideways glances and rolled eyes from strangers when we go out to eat because he may throw food or does something they consider rude or disrespectful. As well as the previous mentioned incidents when strangers approach him. They don’t know he has Angelman Syndrome so it makes going out even more difficult and sometimes we feel as if our family are now outsiders.
Get-together’s are far less often due to we end up by ourselves, whether or not we have Matthew with us or not. If he’s with us, we are constantly watching him to make sure he’s okay. We take turns in making our rounds and say “hi” to everyone but we can’t stay and mingle for the reasons mentioned above. If he’s not with us, then we’re worried that something will happen to him when he is away from us. We don’t go out with friends the way we used to because it’s too frightening to leave him with someone who might not understand what he’s trying to say or sign. Sometimes it’s even too hard to get your own family to understand just how stressed out we are so instead we just limit going out.
8. WE ARE ASHAMED TO BE JEALOUS
Even with the beautiful family and the blessings we have been given, there are times when we can’t help but feel a small pang of jealousy when a so-called “normal” toddler runs past us or is carrying on a conversation with their parents in a way that we wish our little boy could. Then we feel terrible because that child didn’t ask for our son to have a disability. That child doesn’t realize when they call out “I love you daddy” I sometimes think, “Why? Why did this happen to my son and why can’t I hear my son say that?” Then the guilt comes flowing in like a wave crashing ashore so we push that thought as far away as possible because that is not fair to the child or to our Matthew. We am so proud of everything Matthew has been able to accomplish. Our little boy has worked harder than any of our other boys to be able to walk and learn some sign language. Of course we wish that it wasn’t so hard for him but it’s no one’s fault and we can’t let jealousy or envy try creep in when Matthew makes us so very happy.
9. OUR STORY WILL CHANGE YOUR VIEW
Our son is awe-inspiring. Some days we may want to shout from the top of a mountain about how funny and cute he is or how he accomplished something. Other times, when we are having a rough day due to Matthew is sick again, we might not say much. We don’t often share with others, even close friends and family, the depths of what we go through when it comes to Matthew. We feel as if something is always going on, and we know that everyone has their own battles so we don’t want to be a burden or seem negative. We do appreciate when people ask us about our son, but if we are not sharing, please don’t think that there isn’t a lot going on underneath or that we don’t want to let you in.
Matthew has helped us clearly see that true love is meeting someone exactly where they are—no matter how they stack up against what the world thinks they “should” be.
Raising a child with special needs shatters all the expectations that we build our lives around and pushes something else to the core instead, that something being: love and understanding.
If Matthew is ever able to read this we want you to know that we have NEVER regretted a second with you for you have made us better parents, better people, and a stronger family. You amaze us every day with your accomplishments and your smile is what gets us through every day.
We only wish that you were our first child because we missed so many things with your older brothers that we can now see we shouldn’t have because we didn’t realize how important every second of every day is.
10. YOU CAN HELP
To our friends, family, and future friends that we haven’t had the pleasure of meeting yet, or strangers who may know and love a special needs family somewhere please strive to include, work to understand, go out of your way on occasion to help a family who has a child with special needs. Realize that the stress and strain take their toll. We’re doing our very best to be more engaged and to survive. If we seem to seclude ourselves or if we’ve have offended you with our words or our actions, we ask that you forgive us for our moments of weakness. Hopefully, this post helps you understand more of why we may not attend your event, socialize as much as we used to, seem like we are not fully engaged. Always know that we do our best to make our family life look normal and to act like all is fine, yet inside we hope that you might see through that facade every once in a while and understand that we truly appreciate the slightest effort to make us feel as special as our special little man.
Read more of Mike Post’s writings and connect on LinkedIn https://www.linkedin.com/pulse/10-things-you-need-know-special-needs-family-mike-cook?platform=hootsuite