Being the middle of seven children, I have seen the gambit in behaviors. Everything from stitches and fights to games of “War” and dances. I have been blessed to always have a sibling on my side when life turns a sour leaf and family around for holidays…and sometimes when I don’t want them.
But, not everyone is as blessed.
Special needs children are one of the largest groups of children in America…and unfortunately, one of the most often forgotten and ostracized. Many hear the words “special needs” or “Autism” or “Down Syndrome” and immediately think “stupid,” “hard,” and “pity.”
They could not be farther from the truth!
Our little bundle of joy was diagnosed with Autism at age three. And, like all parents who hear that, there was some fear and trepidation (a discussion for another time). At the time, and up until he was about five, our kiddo did not speak. There was loud screams, throwing, tantrums and the like because speech communication was not possible. Getting dressed was a chore as he could not put socks on by himself much less zip a zipper to his pants or button his jacket.
Hard? Yes. But, do I need to be pitied? No!
You see when my son first started to say small sentences – PURE JOY! When he started to be able to zip his pants – JUBILATION! When he started to got straight A’s having to be pulled from class on a daily basis for doctor’s appointments – PRIDE would be an understatement. I even told my husband my kid was the smartest because he did what streamlined kids did in half the time!
What living with a special needs kid has taught me is… [Read more…]
1. Celebrate Life
In our day and age, it is really easy to get down and out. We are inundated with negative thoughts and reality. News broadcasts deliver only negative news and life hits hard when it hits. Seeing the negative is like pouring a cup of coffee – most of us do it without even thinking.
Living with Autism teaches celebration of life. When you can constantly find growth it is easy to be optimistic. When you can see that life is not in a diagnosis but a person it is easy to enjoy the beauty of a hand-painted birdhouse or a freshly made pot of coffee.
Life is about teamwork. And when you have a great team (my husband is a rock star!) the support makes life that much more colorful and brilliant.
2. Enjoy the Little Things
I will admit there are days when life feels like it will sucker punch me every chance it gets. But who’s life doesn’t do that? Living with special needs does not mean that life is easier or harder than for anyone else. It just means we (those of us who have special needs in our lives) face different challenges.
So, like every other family, we celebrate the little things.
We celebrate cutting a straight line. We celebrate our little one talking and playing WITH a peer. We celebrate the full sentence. We celebrate jokes.
These little celebrations may seem little but they are HUGE accomplishments. And they remind us that we are more than scary words. Doctors do not always know best. Just like with every other kid, our kid is more than the sum of his doctors’ visits and school meetings.
3. Don’t Sweat the Small Stuff
Prior to special needs, I would sweat the small stuff. Little things like my sister not emptying the lint trap in our family dryer or how much the scale tipped when I stepped on it were heavy weights on my shoulders.
Autism taught me life is more than the small stuff. There are bigger things to worry about in life like family, doctors, and school.
If it is a choice between my son thumb sucking while focusing on homework or throwing a tantrum because he does not want to do homework, guess which one I am ignoring?
If it is a choice between not reading and reading a comic book, guess which one I am telling his teacher he gets to read?
If it is a choice between rocking in his seat and being quiet or jumping out of it screaming, “Pick me! Pick Me!”, guess which one I am telling the teacher to ignore?
There are big battles and small battles and some battles you just don’t fight. Special needs have taught me how to better see the difference.
4. Don’t Miss Out!
I know many families in the special needs world. Many on the Autism Spectrum. A lot of families think this diagnosis is an end-all to life as a family. Many do not leave the home…ever. Vacation – thing of the past. Trips – never going to happen. Movies – dream on!
When the word “Autism” came into our lives, our son was not talking, not potty-trained, screamed 90% of the time, was very hyperactive and threw tantrums that would make The Hulk look like a mouse. But, we made the choice early on to not let the diagnosis dictate our lives. We made the choice to hold our son to the same standards as any other child and not let his diagnosis be his crutch.
(I know I hit a nerve with some of you just now. I know there is a spectrum and big trips are hard. I know about Regressive Autism. I know first hand about the challenges of tantrums, non-verbals, and the complete difficulty it is to even get childcare for a couple hours of respite. I understand the reason some families choose to stay home. No judgment. It is just not what we chose.)
We chose to take our son out in public to things like museums, theme parks, and, yes, movies.
We did not do this without a plan. We made sure to follow all applicable guidance. But we did discover, that for our kiddo, the exposure helped with social situations, speech, and relationships.
We have a don’t miss out mentality that has served us well.
5. Make Time
It is easy to forget to set time aside for yourself in a regular run-of-the-mill-under-the-radar kind of life. But add in multiple weekly doctors appointments in different cities on different days, school IEP’s, parent-teacher conferences and regular life of working full-time and it becomes really easy to forget about yourself and your family.
I don’t mean you forget your family. What I mean is that it is easy to forget to spend quality time with them.
We have learned that time apart each day whether in a workout, reading a book or playing a video game (yes, I said it) is essential to sanity!
We have learned that game nights, arts and crafts and reading together unite us beyond diagnosis and beyond the stress of the battle.
We have learned that date night does not always (and usually doesn’t need) a sitter. We enjoy a movie night in front of the fire with a glass of wine. We enjoy reading to each other. We enjoy sitting out in the hot tub and talking about life. None of these cost a lot of money. None of these require a baby sitter. And all are an essential investment in our marriage.
More to Life
So, does special needs mean a life of hard work? Yes! But whose life is not hard? Does it mean my life is different than most? Yes, but who wants a normal life? Does it mean I am to be “pitied?” No! If nothing else, I have been blessed beyond most. I have learned more than most. I have enjoyed life more than most.
Don’t let the diagnosis stop you from loving and living life. Don’t let a diagnosis of others scare you off from participating in their life. Don’t let the social understanding of special needs (which is highly lacking and often a misrepresentation) be your understanding of them. Be open. Be honest. Be willing. Your life will never be the same again.