As special needs parents, life is never really easy. It’s hard to have to make some of the decisions we have to. I know from personal experience that it doesn’t always feel good either.
Often times I find myself struggling to do what I know is right because it won’t be understood.
I’m not looking for the approval of others but when well intentioned people don’t understand, it makes things more difficult. It raises doubt and that’s something I already have enough of on my own.
What people don’t seem to remember is that kids don’t come with instructions. Most of the time, parents find a way to navigate through the challenges they face raising their children. However, special needs parents aren’t so lucky. More often than not, we find ourselves feeling our way through the dark, one inch at a time.
Often times, we don’t have the luxury of making mistakes, and we know that. You want to talk about pressure, that’s pressure.
Many times our special needs children have very serious health or mental health issues that require things to be done a certain way. It’s not like we relish the idea of making things more complicated. We do it because it’s what’s best for our children. Those ways may seem strange to those on the outside, but that doesn’t make them any less necessary.
In some cases, we find ourselves in uncharted waters, as the Lost and Tired family does with our oldest, Gavin.
Try knowing what to do when there isn’t an expert you can find that has seen a child like yours before. Most everything is guesswork, and there is no clear cut, right or wrong answers. How are you supposed to know what to do? The simple answer is you don’t, because you can’t.
Unfortunately, life ends up being trial and error, but mostly error because nothing ever seems to work. However, you don’t know anything until you’ve actually tried something and most of the things you try are outside the box (and not understood by others).
In the end, despite all the uncertainty, we have to stand by our decisions because as parents, we know that what we are doing is the best we can do in a very challenging situation. Our goal is only to help ensure the brightest future possible for our amazing kids, sometimes by any means necessary.
I know many of you out there find yourself in the same boat. How do you help those around you to better understand why things have to be the way they are?
What types of things do you run into with family and friends when it comes to them not understanding why you take a certain approach?
I think that many times, these are well meaning people who simply haven’t been special needs parents and aren’t accustomed to some of the unusual approaches that are sometimes necessary with our kids. How can we help others to better understand our plight and why it’s so necessary?
The last thing in the world we need is to feel guilty for doing what we have to do.
I would love to hear your thoughts, opinions and experiences with this.
Abbi has to come first…plain and simple. If anyone has issues with it then they can just be gone….and that is that. Does it hurt…well maybe I have seen and done enough that I have no problem letting you know to go…if you are not willing to build up instead of tear down. I just cant handle it…Abbi deserves better than that.
Very well said.
some well intentioned person recently told me that I would be well served to just let Marc roam at night while I slept.
"ummm no. I don't think so!" was my reply.
We grow very tired of explaining to people how they need to secure things in their homes if they want us to come home. Grandma said that she would just call the Sheriff if Marc stole from her. I asked her if she could just have the deputy spend the entire visit at her house. My wife's family is more accepting of Marc and his blessings than my side of the family.
So we don't go visit. We are largely isolated from our families because of Marc's mental health blessings. (I can't see them as issues, because as much as they limit his success, they also give him some incredible abilities)
When he is in the hospital, I miss him. I find myself waking at my usual hours to check on him, even though I know he isn't at home.
How do I explain Marc to people?
The short answer is: I don't. those who get it don't need an explanation. those who don't get it are no longer in our circle of friends. Sad reality? yes. but such is our life.
my most recent post: http://whynotfathers.com/2012/08/a-long-night-med…
@Carlyoung whynotfathers I so totally understand where you are coming from. The only difference, for the most part is that ours is named Gavin. Hang in there my goof friend. You are an amazing father, friend and human being 🙂
I cannot tell you how ridiculous I feel having to cart around food for my aspie. Friends and family give me looks because she is such a picky eater. They act like I should've done something about her eating habits a long time ago. She is 9 now, and she eats like 10 foods PERIOD. There is no trying new foods at least not recently and she has weaned herself out of some foods. At 9 months old she was still gagging on stage 1 infant food and was almost placed on a feeding tube. Then I heard from countless pediatricians that I should just hide veggies in her regular food. The one time I tried, I hid a sliver of meat like a fingernail clipping size in the bottom of a bowl of noodles and she found it at the age of three I put my food down and made her eat corn. She asked if we were having corn at every meal for the next 2 weeks because she was so afraid of having to go through it again. Even after a year in play therapy has ANYONE ever mentioned that speech pathologists handle food issues. Her initial feeding therapy cost us 300 dollars after insurance coverage and I had to provide the food. No more of that. We are working to retrain her brain to try new food. Since it has been 9 years of not really eating much when it goes in, it comes right back out. What do you do with a kid that doesn't eat cake, cookies, french fries, hamburgers or any normal kid food. I have become a short order cook because it is just easier to make food my kids will eat instead of wasting it and the money to buy it. The other day I watched her try nutella on a piece of bread and I teared up I was so overjoyed to see her not only try a new food but that she was eating bread. It was a no go though. We moved away from all of our family because we just could not take them trying to control how we run our family. I wouldn't say we isolate ourselves but we do not do much outside of our home because all of the yelling and fighting between our kiddos. With sensory issues, aspie, and an anxiety child life gets CRAZY
@JenniferWhynott I feel like that on many occasions. I usually cook and finding something that covers 3 boys on the spectrum with different sensory needs is damn near impossible. We hardly ever have big, well thought out meals because, I would likely be the only one to eat it.
Well said and thank you so much for sharing.
I so get this. as we have three children with on the spectrum with complex medical needs, and mental health issues. It is a road few walk and so of course they cannot understand. We walk this road with no guide and so of course there are times we do not even understand where we are going. Yes, we make mistakes, but we also observe grand achievements. My prayers are with you all.
PS. I put a prayer request on your Good Thoughts and Prayer page. We could use all the prayers we can get. Thank you!!!!
@KeelyCorinneMiller Well said. 🙂
WELCOME TO HOLLAND
by Emily Perl Kingsley.
c1987 by Emily Perl Kingsley. All rights reserved
I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this……
When you're going to have a baby, it's like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books
and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy… and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.
But… if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.
I have 3 boys on the spectrum, My oldest is 21 and 9 and 8 years old. We never got a dx with our oldest son so we just went about our lives doing the best we could. My 9 year old was almost a carbon copy of my oldest son so doing for him came pretty natural. But our youngest was whole new story, his speech was almost none, his sensory issue were so new to us and his likings to the weirdest things made teaching him a whole new game. For the first 4 years of his life I had no idea how to connect with him, it seemed every thing I did just did not get through. My family did not understand his obsessions and we were told not go come back to my Father's house. Then one day at church his teacher told me how his eyes lit up when they did puppets! It was a huge eye opener we knew Andrew liked puppets but we never knew that would become our way to connect. Each child on the spectrum is so unique that it is all trial and error because what works for one will not work for another. Trying to explain this to others is a challenge in itself! I love the poem "Welcome to Holland" and that has become my way of explaining to others who just don't get it!
@TinaMarieCrain I really appreciate you sharing this and I don't know if many people have read the poem but your absolutely right. It's perfect…..
I'm posting the poem above for everyone to read.
When you care about someone and their understanding your kid or kids and family is important to you it is hard ,but we have found after 4 boys ,2 are autistic that we know best and if you can't be supportive,or at least agree to disagree,then you go out of our life,we have lost family and friends,our kids are our test,if you can't deal neither can we . Sounds harsh,yep it is so is our life and we live this everyday no one takes the responsibility but us ,to the day we die.We will not waste time,or energy or our breath on people that won't respect what they have no concept of ,what you find in this journey is who is your family may or may not be blood,the people that will get it will amaze you and the ones that fail you ,well they fall away ,and yes that hurts ,but not as much as continuing to have a relationships with people that disrespect your family and make this journey harder than it already is .At least this is what we have found after 25 years as parents and 21 years as a special needs parents. Gloria
@ChrisCrane You know, so many of us have had the same experience. It's really sad because how much better would our lives be if people could understand and be supportive.
We are very lucky because collectively, our kids grandparents are very supportive. Occasionally we run into a snag but that's life. Having said that, we have lost family and friends over the years because they just couldn't get it.
Thank you for sharing your story… 🙂
Mike made a good point. However, what about the people who haven't reached the end of their rope and still want to try building bridges? What advice can we offer them?
Again, Mike is not wrong at all. We are all in different places on this difficult journey. Some have been traveling the road a lot longer than others.
Honestly Rob, most times I just give up. It's too draining trying to explain over and over again with people who, despite being well intentioned, just don't seem to "get it". From grandparents who ignore our pleas to not give Sage certain foods to strangers that do not hesitate to issue nasty looks when there is a meltdown, my demeanor has become very stern and short. I am tired of explaining.
@MikeMcLarty That's an excellent point Mike. We can only invest so much attempting to help others understand. Your right, it can be very draining. The unpleasant truth is that we only have so much energy left and it needs to be dedicated to our kids…. 🙂