Fellowship Fridays: Dealing with Special Needs
July 3, 2009
So many of us deal with “special needs” issues at some point or another. Maybe we have them ourselves, or one of our children does. Sometimes a family member or close friend has complicated life issues that they didn’t choose, but must deal with nonetheless. Being able to successfully cope with these additional challenges has a lot to do with our attitude about our lot in life.
There was a time of about a year and a half when my son, Hunter, was a special needs child. He had a first surgery that went wrong, leaving him fragile and in excruciating pain for six months. Then he had a repair surgery that required him to be in a halo for three months, and on “safety mode” for a year or two after that.
During this time we went through the usual procedures: too much time in the hospital, too many MRIs and CTs, too many doctor appointments and physical therapy sessions, and far too much wondering about why this had to happen to him… to us. It was an emotional roller coaster for us because we were scared, frustrated, confused, worried, angry, sad, and feeling a little bit cheated.
I remember being jealous of other parents whose kids could ride their bikes, run on a playground, or jump into their arms. I remember not knowing if Hunter would EVER be able to do those things again. I remember crying… a lot.
My point is, I know that the term “special needs” has a special meaning to those who have had to deal with these sorts of challenges and questions. So, for today’s Fellowship Fridays I wanted to share two stories about dealing with special needs that I found particularly inspiring.
1. Hannah’s Story from Donnell King’s blog, Trisomy Kids Are Special.
I met Donnell in passing one day when he emailed me to ask about my “closed comments” policy Tuesdays through Thursdays. We traded emails for a while, debating the pros and cons of several alternatives, and eventually ended up talking about life, kids, and special challenges. It was then that I read about his daughter, Hannah, and the beautiful way Donnell described their situation. What inspired me was his positive and grateful attitude. You’ll see… when you read it.
2. Welcome To Holland, written by Emily Perl Kingsley in 1987.
This story changed me. It changed the way I see the world, and particularly the way I view the curveballs often thrown our way when we least expect them. I wish I could tell you more about it, but that would ruin the experience for you. You should have the pleasure of “discovering” the story, and its message, as I did.
The extraordinary thing about both these writers is that they have managed to stay positive about their special needs circumstances. I’m sure they still go through a lot of the emotions you would expect, but they don’t let themselves linger in angst or despair. They don’t give up.
If you have had to deal with “special needs” circumstances, how have YOU managed to stay positive? What good things have resulted from your challenging situation? Do you feel there is good to be found in every circumstance? Have you accepted your challenges as part of your life?
If you are currently struggling with one of life’s curveballs, please know that you are not alone. If you want to vent to someone, without fear of judgement or repercussions, please… PLEASE… email me at MyQuestForBalance (at) gmail (dot) com. Don’t keep it to yourself and suffer in silence.
Thanks!!!
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Posted in Fellowship Fridays, Overcoming Challenges, compassion, family, helping others, love
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I feel like I should have some special wisdom to impart, some great insight to share that will help everyone deal with the “special needs” in their lives, but I just don’t. Despite being physically disabled for my entire life, and in a wheelchair for the past 6 or 7 years, I don’t have any special ways to cope that would make it any easier for anyone else.
I do know that growing up, I was treated no differently from my brothers or sister. I did my fair share of the farm work despite being disabled. I chopped wood, carried water, picked up rocks, fixed fences, and fed the animals just like everyone else. I got zero sympathy from my siblings or my parents. That might sound harsh, but it taught me that I shouldn’t expect any consideration or leniency in “the real world” simply because I was disabled. It also taught me strength, perseverance, and determination. These are the greatest gifts that any parent could give a “special needs” child….or even a child without special needs.
Jay Schryer´s last blog ..The Road’s Still Long
Wow, Jay… you know, when I was reading your description of being expected to do what everyone else did (without much sympathy) I was thinking that it sounded pretty harsh and cruel. But then I realized that, like you said, it really was the most loving thing your parents could’ve done.
If you had been treated differently, either babied or set aside, that would’ve been awful for you and/ or your siblings. As you’ve pointed out, we do all have to function in the same world and by the same rules. It might be a little (or a lot) tougher for you to get around, but you don’t let anything hold you back. You’ve got big dreams, big plans, and big memories of great experiences. I think your parents did a great job with you!
Wait a minute… is that a new blog post I see? I can hardly wait to check it out!
It is conincidental that I am reading this. On my own site today, I blogged about finding a blessing, a positive, on even the darkest of days in one’s life. I have had special needs since I was 25 (I am now 58), and have raised one special needs daughter, and helped with a special needs grandchild. And sometimes, help in flesh just is not available.
This is when I lean heavily on my faith and on prayer. I have found a tremendous amount of help in learning to love the simple every day things and in being open to spot the blessings on even the darkest of days.
I hope that helps.
Karen
Hey, Karen! Thanks for stopping by today… on this lovely holiday weekend. It sounds like you’ve had quite your share of meaningful lessons in your life.
You know, one of the best things I learned from my son’s special needs time was exactly what you mentioned here: the simple every day things are PRICELESS. When we didn’t know how things would turn out for him, I remember being excited just because he woke up each day. I wasn’t worried about all the developmental milestones or keeping up with the other kids… I was just happy that he was with us.
Still to this day, when I catch myself worrying about how he’s performing relative to others in every little thing (you know, that nasty habit parents, teachers and doctors have), I remind myself that I really don’t care… as long as he’s healthy and happy.
Have a Wonderful weekend!!
One question that always helps me is, “if this situation never were to change, what’s the one quality I need to make the most of it?”
J.D. Meier´s last blog ..Lessons Learned from Bruce Lee
Wonderful question, J.D., particularly since you start from the assumption that it may, in fact, never change. I think one thing that makes these challenges so frustrating is that we tend to think, “OK… I’m ready to get back to normal now.” But, what if this IS the new “normal”? The sooner we accept it, the sooner we can find positive ways to deal with it.
Thanks!
Happy 4th to you!
I could write a book on this one. I have been a step parent to a special needs child. One in which I love beyond words. I did homeschool him for 7 years as a result of “school bullying”, but we survived. I have seen what is like to not have a child than can fit with the rest. It can be challenging, but the positives for me were always visible. I never lost sight of them.
Then I had two boys of my own. One(14) in which is my “perfect” child. I say perfect only to describe his physical and mental behaviors. He does not struggle in either area. Then I have my youngest (8) that was born with severe asthma and cannot be a participant in many activities. He is allergic to chlorine so this is another problem in and of itself.
Where does that put me. Right in the middle. I have sympathy for those parents that have children with special needs, but on the flip side, I do not like parents always using this as an excuse as to the “why” of “why” their child cannot participate in something. Those that will say to me, “Oh, you’ve got it made. Look at Mitchell…strong, healthy. We don’t have that.” Sure there are those children that cannot do anything. This does sadden my heart.
I would just say this. Never say never. Even when I became a step parent I was told the child could never ride a bike. He could never graduate. He could never swim. He did all he was told he could do. Maybe not perfect…but he did them.
Sure, I was exhausted. Sure the rest of my life grumbled as a result of this. End the end I would do it again. I have gained so much from having loved a special needs child. To this day he and I are best friends. Special needs children have a huge open heart. It is there for the taking. So many just don’t see it.
This was a wonderful post!
Tammy-Cricket´s last blog ..A picture begins with "it"…
I was labeled special needs when younger. I was the only African-American student in my elementary school, and despite scoring in the top percentile for all of the tedious academic testing, I was classified mentally retarded (the term “du jour”) placed in a special needs class. And it didn’t stop there. My desk was distanced from the other student desks and tape placed around the desk so that I or others wouldn’t cross any boundaries. As a second-grader receiving mixed messages, I was confused and humiliated.
But, I learned a great deal. Such as :
My parents (once they uncovered that I was placed in a special needs class) would go to bat for me. And then some. You could go plenty of places with my parents, but don’t question the intelligence of their daughter. For me, that was my first conscious understanding of the importance of family and loyalty thereto.
My classmates had more moral backbone than those of supposed greater mental fortitude. As a second grader, I didn’t have the sophistication to question moral standards nor the foundation from which these standards are developed. But I this experience prompted me to volunteer in special needs classes in the inner cities when in college. And at that point, I did realize how simple the concept of right and wrong can be through these students unfaltering examples. It was powerful stuff.
Lisis : Thanks for sharing your experience about Hunter. What’s been your gift from that experience?
Nelia´s last blog ..Moving Along
@ Tammy: What a fantastic perspective you have, as a parent and step parent of kids that span the spectrum of special needs. I definitely think the “special need” should not be seen as necessarily limiting. After all, we’ve seen countless special needs athletes, mountain climbers, etc. I suppose if the challenges are a little tougher than they are for most, the rewards must be infinitely greater when a goal is achieved.
You’re so right about the huge open heart. That’s one thing I noticed right away during our times at the children’s hospital… those kids, all of them, were a joy to be around (even under the circumstances).
@ Nelia: Well that is quite a story… I’m a little speechless. Why were you considered “special needs” if you were testing well? Please don’t tell me it was because of the color of your skin… I don’t think I can handle a truth like that. And then, even if you WERE special needs, why in the world would they quarantine you like that? I cannot imagine what that did to your little self! I bet your parents were BE-side themselves!!
Maybe they did you a favor, despite all their efforts, by placing you with kids who were so loving and caring. One thing I noticed when Hunter was placed with the special kids was that they really ARE “special”… they were some of the sweetest friends he’s ever had. Now, when he interacts with regular kids, I’m often left feeling like they are emotionally challenged… so many of them are selfish, greedy, and downright mean!
My greatest gifts from that experience were two: never taking the little blessings for granted, and no longer worrying about trying to make sure my kid is like the others. As long as he’s a healthy, loving kid, I’ve got no complaints.
Thanks for sharing your story… I get the sense that there is a LOT more to tell there. Hmm… might make for a great Spirit of Adventure post (dare to be happy, no matter what anyone says!)
Thank you for the kind words and the fellowship, Lisis, as well as the insights from the other posters. We have the “Welcome to Holland” piece framed on the wall of Hannah’s room, where it continues both to encourage us and to remind us that everywhere you are is a place worth fully living in. I understand how different experiences can be, of course, and each day is different as well. We’re very grateful for each day with Hannah and with each other.
Hey, Donnell… thanks for the inspiration! I think it’s so neat that you have “Welcome to Holland” framed in her room. I had never read it before until after I met you. Someone sent me a twitter link about it. What a neat (and meaningful) coincidence.
Have a wonderful weekend!!
Hi Lisis, I stumbled this blog by chance and I was deeply touched by this article. I am lucky to have normal nephews and nieces in our family. Reading Jay’s, Karen’s, Tammy’s Nelia’s made me stop and ponder on how all the blessings God has given me.
I wish you all good health, peace of mind and happiness.
Hi, Adventurous Wench! (Great name, btw!)
Welcome to Q4B! As I was reading their comments here, I had the same reaction you did… instant awareness of all the blessings in my life, not least of which is being able to share the journey with such wonderful and inspiring readers.
Thank you for your thoughtful comment.
Lisis : You? Speechless? I can’t imagine the day. Re reason. Quite frankly, I never asked my parents what was the reason cited for placing my in the special needs class. I suppose I should, but the circumstance is water under the bridge after all these years. The “special need” issue never followed me to any other schools including the Ivy League I attended for law school. Whether this incident can be attributed to the color of my skin is unknown. But unfortunately, other racial instances occurred at this school, many of which were blatant.
Re Hunter. I can see allowing myself fall prey to the “compare my kid to everybody else’s” sydrome. I think that’s a powerful gift to receive early in the life of your child and one I hope to remember when my own comes along.
Nelia´s last blog ..Moving Along
You’re right, Nelia. I think two of the biggest traps we unwittingly fall into as parents are: comparing our kids to other kids, and trying to live vicariously through them (giving them the life we never had, or helping them achieve what we never did.) Either way, we are kind of expecting them to live up to someone else’s ideals.
What we really need to do is just back off a little, let them experiment and discover (maybe even stumble), and then support them in becoming who they want to be. It’s much easier to do that, and live without expectations, when you are just thankful each day that your child is still with you, and healthy, and happy. HUGE blessings.
Always great to see you, my dear!