Special Needs Parent

Updated on November 11, 2018
m-a-w-g profile image

Chris' son has a rare syndrome by the name of Mowat-Wilson Syndrome. Though challenging, it is one of the best things in life.

Parenting

In general, most people reading this are parents are soon to be parents. Welcome to the club of uncertainty, insecurity, and self-reflection. Or at least I hope this is the club you are joining. I personally think parenting is something that should be questioned. Not by your kids though, but by you.

There are many things that all parents should have in common and it all boils down to wanting the best for our children. Sometimes we have have to enforce a rule to teach that there are consequences, often that is probably harder on us parents than on our children. I want my kids to be happy, but in the long run I want them to be reliable, accountable, compassionate, responsible, thoughtful, charitable, and accepting of others. To be graceful in life and with others.

We all have concerns about our children getting hurt and taking risks. There are different scales of protectiveness here. Someday I want my daughter to find the love of her life. That person who will stand beside her no matter what, accept her and cherish her. I don't want her to feel the hurt of a painful breakup, but she probably will.

When our kids are hurt, I wish I could take their pain away and make them better. But in many cases, the hurt is from not being careful and it does teach a lesson. As stated though, most every parent feels these things and we need to let our children experience life and continue to grow.

Modern Disfunction

While doing research for this article, I found 628 million Google results for "special needs parents" but while searching for things that most parents have in common I searched for "what do parents share" there were 1.110 billion results and they had to do with sharing custody of children.

I am glad that people are looking for information to make that process easier, my parents divorced when I was in 4th grade and I can say it wasn't an easy process at all. Having to discover how to make a successful marriage work is hard enough when you have examples, trying to figure it out on your own is even harder.

What I am shocked by is that Google's algorithm changed me to a completely different topic than I was thinking about because it is searched and clicked so often. And that there are almost twice as many resources for custody as there are for special needs parenting. Marriage can be a scary thing because we love it so much.

Do you not see how necessary a world of pains and troubles is to school an intelligence and make it a soul?

— John Keats

Disabilities

To start with, let's clarify what I am talking about. What are special needs? There are four types of special needs:

  1. Physical
  2. Developmental
  3. Behavior and/or emotional
  4. Sensory

An individual may fall into one or more categories. Rylan falls into each of these categories. Physically he has impaired mobility and lacks fine motor skills. Rylan has been diagnosed with cerebral paulsy and he has seizure disorder. Developmentally he may be a couple years old, although chronologically he is nine. Rylan was diagnosed with autism several years ago as well. Possibly having Attention Deficit Disorder and having Post Traumatic Stress Disorder from countless surgeries and hospital stays with an inability to clearly communicate because he is deaf-blind as well as non-verbal which puts him in the sensory disabled category as well.

Our Case

This is a short resume, Rylan has had over 40 surgeries for:

  • Heart surgery
  • Intestinal malrotation
  • Multiple ear surgeries
  • Genital surgery
  • Gastrostomy tube implant
  • Central venous catheter implant
  • Dental surgery
  • Colon surgery

Rylan has been in a coma for five days because of how two medicines reacted, life-flight because of a major seizure, transported to hospitals from other hospitals at least a dozen times, at one time had at least 23 specialists, stopped breathing during two seizures, anaphylactic shock, and I could continue but I don't think it is needed.

Click thumbnail to view full-size

Feel the Future

There are times when the future looms in front of you, and these are generally bad times. Holding a child in your lap while trying to figure out what is wrong. One second walking out the room the next on the floor and non-responsive. Checking for twitching or jerking to see if a seizure, noticing no movement in the chest, no breath from your child's lips. Going through a checklist: checking the time, making a note of where your other child is, communicating with your spouse, CPR, a cough and a shuddered breath in, what a relief. Hold sideways to prevent pulmonary aspiration, verify medication dosages for hospital because the ambulance is on the way.

The bad part of that is the feeling and knowing one day you will be separated from your children, but these are the moments that teach you to love the moments you do have and be thankful that you get to have those moments and make more of them.

Gratefully a Special Needs Parent

Being a special needs parent is a double edged sword. We wish our children were typical, but they are not and will never be. This is probably one of the hardest truths to accept on an emotional level.

The other side of that sword is the moments we get. I celebrate the small things, when Rylan feeds himself with a spoon or when he learns to open the pantry and open a bag of pretzels...

There are so many small things in life that matter and most people take them for granted. When it comes to Rylan, I am grateful for his laugh, signing drink, more, please, pulling me by the hand, climbing on my lap to watch something, how he dances to Koo Koo Kangaroo, when he is exhausted after a seizure and rubs his face on the bed, I have many of these moments that I don't think I would appreciate or cherish if Rylan hadn't made me a better person.

Always More

This has mainly been focused on Rylan, but our daughter is an amazing influence on me as well. One of the most compassionate people I have the pleasure of knowing. I am proud of her on so many levels. This is one of those places that I have a difficult time saying special needs parents are different because of this or that reason. I think our special needs son has put life in focus and helped me prioritize. I would not be the person I am today if the events that have happened to me would be different. Talking with family, I asked how Rylan changed them. Here are some of the answers.

Because of Rylan, I learned the name of every special needs child in the school and made of point of talking to them. I had avoided that before because I was uncomfortable and didn't know what to say. But I would want people to talk to Rylan, so I made a point to talk to all of the kids at school.

— NB

Commitment

I am grateful that Rylan taught me commitment. Rylan may have been put into my life to make me a better person, I will always be there for my family. It will not always be easy but I married my wife because I love her. I don't know why we wanted children, but I love them with everything I have and will be there for them.

Matters that I thought were important in the past, I have discovered to not be important. I have realized that my family is important. Being a special needs parent doesn't go away, so you need to learn to adjust and focus. I am grateful that my life is better in so many ways because I am a special needs parent.

He shows me God, because he loves and is happy even with all the stuff that has happen to him. People love him and even when he gets into my stuff, I love him so much and know God.

— EA

Questions & Answers

    © 2018 Chris Andrews

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        Joyce Dykstra 

        5 weeks ago

        Beautiful

      working

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