Dear Parents of…

Because of a busy schedule, I would have liked to post something once a week this October as it’s Disability Awareness Month but had already decided to offer my 5 Part Mini Course related to my writing life, instead.

Disability is a part of everyday life, it’s something I deal with and it’s something I help others also deal with and teach them ways to surmount their daily challenges both attitudinal, physical and personal mental blocks people have around accepting and moving past their condition.

In essence, whatever I would end up writing, for me, just wouldn’t scratch the surface and I feel that way about this post but am going to post it anyway. I have been thinking though over the last year, through a bout of illness this week and in my work with persons with disabilities that I should address at least SOMETHING and so I decided to write this little list to Parents of children with disabilities… Special Needs…challenges – whatever you want to call it.

I want to make a disclaimer, this is my blog, this is my experience. It’s okay to disagree with what I’m saying, I don’t mind that at all. But do so respectfully. I’ll go ahead and also disclose that I’m not a parent but I don’t think that makes any difference. For the purpose of what I’m saying here, I was both “parented”, and I was disciplined and I am a professional that sees lots of different young adults every single day.

Finally, I so respect all the decisions that my parents made with my care and my well being in mind, AND all of their choices and the way they raised me. I’m grateful for their bravery so with what I’m saying, I’d still believe that not being a parent doesn’t reduce my observations and make them any less impactful.

So, here they are a few:  Things I’d Wish Young Parents to know about Raising Children with Disabilities…

  • Do whatever you can to FIND opportunities for your child with a disability to do creative AND physical “other/extracurricular” things. As I get older, I realize that so much time was spent

Finding a job – get job

Stick with job

Get health insurance

Get steady income

Do job,

do job,

do job….

This is the way it is for most people with disabilities that once gainfully employed, many (if given the opportunity) simply stay there. There is nothing wrong with staying in a job. I’m saying that if you think about it, because of a disability, the sports and the after school programs and the opportunity for special camps, etc., are largely omitted. It’s sad to think that some don’t get that opportunity to explore what you like, what you’re not that good at and what your interest can be given the opportunity to taste a little of this and that. It’s like if you have a disability the only real things that many old thinkers thought were open to you included such programs like Debate and Chess Club and Yearbook Club -which are fine if that’s what you WANT TO do. I’m saying wouldn’t any one with or without a disability have LIKED the opportunity to explore MORE?

I didn’t really discover writing until my mid 20’s. That is not super late, but not that early either. Let your child dream, learn and yes, trial and error their way through. If the powers that be, a coach, a teacher has never had a child with a disability participate in their particular domain, well you punch them in the face. I’m JOKING. Don’t do that.

But, YOU, PARENT find a way and perhaps even give the challenge of his/her participation to the other kids and look to THEM to find a way to help someone get involved. Imagine the unlimited possibilities (and the awareness) the kids, the coach/teacher and you and your child will have instead of just giving up at the first “No”. Nobody is ever better after the first “no”. Guess what else? You are in an awesome time where people are more open, more creative and more willing to be inclusive. How awesome is that? That wasn’t the case when I was a child.

Please give your child as many opportunities as you can afford so they can experience different things, even things you THINK they can’t do. There is a way. This will challenge them to be creative and later, they will make the best choices for their skill set (and their likes/dislikes) in mind, which will make them healthier and happier adults.

I dare to think that fashion designer or washi tape/journaling guru have been something I’d enjoy if only I’d had more ability to explore these avenues – Erin Condrin? Girl bye! (Uh, I like Erin Condrin planners and washi tape, sorry).

  • MAKE THEM DO SOMETHING FOR GOODNESS SAKES – even if it hurts you. In my new book, Pack Light: Thoughts for the Journey and in speeches I give, I talk about how my dad made me get a manual wheelchair first. Man, that absolutely sucked. But he wasn’t afraid I’d be hurt, or tired (and he didn’t know I’d hire my friends to push me around but no one knew that it was my secret). My dad knew that it had been best at that time for me to try to use my muscles and push myself (or at least do so at home). Would I eventually move to a power chair? Yes and fast, thank you Jesus. BUT, you cannot be afraid your child will break just because you make them use their muscles or their mind, or their mouth or whatever they have. Swimming, adaptive three wheeled bikes that are hand powered, get on with it, NOW.

Even if you see them struggling, just go in the other room and cry. Can I be candid, I know a parent of a child with a disability – okay I know tons of them, SOME, (a lot) sit around and do everything for their child. This actually pisses me off because you know what this causes? Underdeveloped muscles, scoliosis to the worst spine curvature you’ve ever seen, inward spines, collapsed lungs, tight muscles and gnarled hands, fingers and feet and a host of other problems physically AND even mental limits that all paint a dismal picture of that child’s future, IF THEY LIVE THAT LONG.

Muscles exist even in the weakest child -I’m weak people but compared to some, I’m doing all right, I made it to 40 when so many doctors didn’t think I would. Might I even dare say that doing everything for your child (disabled or not) is the leading cause of what we now call our precious “Entitlement Generation?” DO NOT allow doctors to put limits on you. Hear what they say and then run the hell away! ONLY because of my Mom and Dad (and God) can I still feed myself and cook my own food. Sounds petty to you, well keep watching and living.

I’m sure it hurt my Mom to push me (and don’t tell her, she could have pushed a little harder now that I see what I can and cannot do and am grateful for what I can) or watch me struggle until I did something by myself. I had little bouts of triumph doing this or that. I got to feel a sense of accomplishment even in the midst of my resentment for them not doing it for me. I still struggle with things but I keep trying and all that struggling inspired drive and determination. What’s sad about requiring nothing of your child with a disability, you won’t even know if a little push could’ve prolonged their life. Try it.

  • WHY CAN’T WE WORK AND GO TO SCHOOL (or school and volunteer or multitask)? I worked and I went to school. ME, the person with the disability. It’s not for everyone but if you have a physical disability, I’m simply asking what would happen if you tried? No one gave me any money for school, only a small advance from my parents toward the very end (about to graduate), to pay for the very last two classes toward my degree. No one gave me a car to get to and from campus and no one drove me to and from school. Uh, I took the freakin short, dilapidated bus with the mean bus drivers. Took me longer? Yes, but that was not based on limited funds. Student loan debt? Nope. My point isn’t about working AND going to school, my point is the thought that people with disabilities are somehow always expected to do less. Nowadays, this is an obsolete and out of date view of the capabilities and human potential people with disabilities have as oppose to our peers. Our greatest detriment isn’t inaccessibility (it’s a problem, oh yes) but our other greatest obstacle is the attitudinal limits placed on us by peers and parents.

Man, get outta here.  (Say with a New York accent, sounds better.)

  • Next, expose you and YOUR CHILD with special needs. What does that mean? The greatest issues I see, grown men and women with intellectual disabilities desperately seeking friendships in all the wrong places (like with an transit driver -ask me about my awareness workshop for this very purpose), it’s real. What’s worse, there’s a sex offender registry waiting for their name to be added and the DON”T discriminate regardless of what really happened.

I’m very serious. Friendship later in life, are one of the largest issues that no one has the cure for. In school you’re stuck together for eight straight hours, and through that you’re A. less likely to get in trouble and have idle time and B. Bound to find someone to talk to for the better part of your day and make a friend that way.

As you become an adult, many of those friendships AND that free transit to and from school, begin to dry up.

Try to develop these relationships early, and be sure to get them in the neighborhood where you live, NOT far away if your child happens to still be bussed to a special school (which should no longer be the case but still is). Not everyone is the play date parent, I know, but work on this, play dates, groups and whatever else you have to do to get little Johnny and Susie out making friends is PARAMOUNT. After issues with housing, employment and transportation; gateways to friendships and social interaction are the next most difficult issues to overcome.

  • To continue a little bit with # 2 – Socialization and Working with strangers will be another issue. TEACH children about touching and inappropriate behavior and how they should conduct themselves and to report suspect behavior IMMEDIATELY. I can’t believe how many parents are afraid to broach this subject and the only person that will suffer if you don’t; is your child.

Moreover, teach them to be cared for by other people, not just YOU. AND If you do number 2 above, when they’re 27 and 35, they’re social framework will be stronger. Keep pushing them to talk, interact and provide them with opportunities to make friends with other people.

This is also impactful on their ability to work with aides, caregivers, teachers and medical professionals in various fields. I’m sorry but NO ONE will cater to your child like you do. You have a special connection and something called LOVE that produces a special bond (only for you). Of course, we wish that anyone that ever worked with little Johnny or Susie could see their “potential” and witness a “best day” but even if they did, this wouldn’t mean that they could then be the surrogate parent to your child in the event of your inability to care for them. It’s just not going to happen.

Outside of your immediate family, they care but they don’t necessarily love your child and they don’t have you. BUT, if you show some resistance right now in every day parenting, when their caregiver says NO, or they don’t always get what they want, they will have heard NO from you and they won’t be prone to throwing a tantrum or showing signs that clearly let others know that no other human being has denied them anything.

If they have the ability to get along with people, their caregivers and other medical professionals; guess what? When you’re nursing home age, you can wave goodbye knowing you made the right connections and you TAUGHT them about behavior (and even outright rejection) so you don’t end up with a child (in an adult body) that has no ability to take direction and won’t run off every caregiver ever brought to them to work with.

This is a very real issue. I’ve seen young adults who can’t deal with anyone but Mom and Dad. I know, in this instance, they may have an intellectual disability, but even a baby can handle some level of disappointment. I’m sorry, as Mom and Dad, you did not receive a “live forever” card when you procreated. It’s just not happening. YOU should set the example and you will have only so much control over their life, as you age. Being tougher hurts you more than it hurts them.

I realize sometimes you have an impossible issue with your child, their behavior may be beyond what you can control and had you started early, it wouldn’t make a difference. Okay but also note that you cannot suddenly be firm when they are sixteen. It’s okay to admit that behaviors are beyond just a little “talking to” but then decide to seek the resources and additional help to give you alternatives and to learn. Help is out there.

Now, go raise an awesome child.

I’m just saying.

Note, some of these are blanket statements and generalizations and I realize that. I’m ONLY discussing SOME issues I have seen and I know had things been done just a little differently, the future would be better. It won’t work for all, that’s not my goal -to give you a solution to fix all. My goal is to enlighten the ones that I can. If it works great. If it doesn’t and you’ve tried, then you have to let go and try a different approach or decide to move on. At the end of the day you do what you feel is best and be committed to that. 

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