Got a lot of blackberries? Then check out this recipe for Blackberry Mojito Fruit Leather.

I'm not a huge fan of fruit leathers, but this turned out super good! And, really, you can't go wrong with blackberries, mint and rum.

Monday, October 3, 2011

Parenting Special Needs Kids - 5 Truths

Parenting, in and of itself, is undoubtedly difficult. If you are one of those lucky parents that has the easy kids (and, by easy, I mean neurologically and behaviorally normal), it's hard to put yourself in someone else's shoes. Someone whose child or children don't behave or react normally.

Last week's multitude of events around here brought into high relief once again that the job of a parent with a kid with multiple issues is vastly more difficult. So, if you are on the inside looking out with me or on the outside looking in, here are some things I've learned.

1. You will lose most, if not all, your friends. It's often just too difficult to maintain relationships with people when your own child/ren behave outside the norm. Especially if your friends have "normal" kids. Most parents are super busy, trying to juggle a number of things. Adding to the mix the constraints your special needs child requires just makes outings, meals, get-togethers, etc. extra difficult. Sure, they may throw you a bone once in a while, but don't expect much beyond that.

2. You will be blamed. Unless your child has some obvious physical deformity, any behavioral issue will be placed squarely on the shoulders of the parents. It, of course, has nothing to do with the child's own inability to handle certain circumstances. It, therefore, must be the parent's poor job of raising that child.

3. Behaviors will be blown out of proportion. Any out-of-the-ordinary behavior will not be analyzed based on the child's underlying inability to handle a situation. No, other adults (even specialists), will assume your child's reaction or behavior means they will become a mass-murderer or is just plain dangerous.

4. Your other children will suffer. I generally get the old, "your daughter is gaining so much by learning to interact with your son". I just wish she didn't have to deal with any of the outbursts, whackings and limitations in pretty much everything we do.

5. You will be afraid. You will be afraid for your child. And, in some circumstances, you will be afraid of your child. This is probably the worst part - not knowing whether or not those behaviors will progress to something worse. The big problem is, you never know if those dimwits in #3 are right.

Do you have kids with special needs and, if so, do you experience something similar?

29 comments:

Army Hippie Chick said...

The only thing I can say right now is "you nailed it."

s.e. said...

Your #1 is SO true:(

koolchicken said...

Both my brother and I have Aspergers and I know most of your comments reflect the problems we've had with him more so than with me. As a girl most of my behavior was shrugged off as being "young" for my age. It was okay for me to have an outburst, and people called me creative and a free spirit. My brother on the other hand is a completely different story. He was considered abnormal, and there were constant negative comments directed at both him and my mother. In fact he was diagnosed before ten, but I wasn't until I was 19! I will forever believe it's because he's a boy and I'm a girl. Granted he has a few other issues and is slightly more impaired, I still think he stood more out cause he wouldn't "be a man".

I think the biggest worry in our family is his size. He's 6'1" and weighs about 235 so if we're in public and he freaks so does everyone else around us and that just makes it worse. We're always worried he might be out somewhere by himself and have a melt down and we worry about what other people, or police might do to him. He's not dangerous, just big and loud. But other people don't know that.

Hopefully your son gets a little better with age. It can happen, I've seen it myself.

Missy said...

I agree with each and every single one of those.

I have a child with Aspergers and I cannot even begin to count how many times his behaviors have been blamed on our parenting skills.

Having a child with special needs is lonely. There are restraints on being able to do things that "normal" people do, like go to the park, the zoo, etc because they may have a meltdown, the smell might be too much or they are just plain having a bad day.

Thank you for this post. The general public needs to be educated on what it is like to be the parent of a child with special needs.

Sam said...
This comment has been removed by the author.
Sam said...

I watched a movie about Temple Gradin recently and got a small whiff (even if it was a Hollywood-ized version) of what it must be like to raise a special needs kid. Part of my reason for remaining child-free is I would like to be able offer my time to friends with/without special needs kids if they need it. I don't have all the skills necessary but I am very patient which I think can mean something sometimes.

It is such a shame that you have to lose friends over what I think is a rather trivial issue...sure it is challenging, but at the end of the day, I thought thought friends were the group of people who stuck with you through thick or thin

Anonymous said...

Posting anonymously to say that #4 and #5 are RIGHT on the money. Thx for speaking up for special needs kids - and their parents.

Kate said...

I don't have kids, but I grew up around a profoundly mentally retarded and physically disabled cousin. What you say in #3 is correct. The next oldest child in that family, my cousin suffered profoundly from the parental attention black hole that was his younger sister. My (male) cousin became thoroughly hyper-active to the point that *he* also needed medication. It was clear to everyone, including his parents, that he was simply looking for a slice of his parents' attention, which he would have had under different circumstances.

But here's the thing. My disabled cousin died this year, aged 31 years. At her memorial service, both her brothers and her surviving parent gave unbelievably moving testimonies to her spirit, and the influence she had on their lives and their outlook on the world. That brother of hers who had grown from the hyperactive child into the immature, recreational drug-dabbling, clownish wastrel of young man is now on the board of an organization dedicated to helping mentally retarded students transition from special needs schools to assisted living facilities for young adults. He suffered because of his sister, undoubtedly. But he also transformed that experience into a character of beauty and depth, despite the long years when most of the family despaired of him ever growing up. I couldn't be prouder of him.

Greenpa said...

Well you're in a cheerful mood today! jeez! :-)

Not to deprecate, but I have to wonder if some of the down mood is because of the euphoria you probably were experiencing on Hank's birthday. Then you wake up the next day, and the dirty dishes still need to be washed.

"Cheer up, Brian." (finale from The Life Of Brian, for any not acquainted- )

www.youtube.com/watch?v=ljbao-JjRoM

no, down deep not funny, which is their point, but yeah, we ARE all in it together, finally-

Aimee said...

I'd live some practical advice on how to be a good friend to these parents! A good friend of mine who has two autistic boys moves to town not long ago, and aside from listening and keeping my mouth shut most of the time, I don't know how to help. Now that I have a little bit of a relationship with her boys, I have babysat for them so they could go o a movie and made it clear that I will do it again any time.

Her boys have particular issues that make it difficult for her to visit my home - or really anyone's home - and I can't invite myself to her house... So what DO I do?

Brad K. said...

Reading #3 is disturbing. Doesn't this mean that mainstreaming in public schools should be done on a case-by-case basis, with the good of the school and other students taken into consideration? It also directly contradicts the premise of "no child left behind".

The only contact I have had with special needs kids was a friend with a Mongoloid child, and several days substitute teaching in elementary and middle school multiple handicap classes (I was invited back by each teacher).

Blessed be.

Crunchy Chicken said...

Sam - Unfortunately, it's not a trivial issue. It's the practicality that makes it difficult. For a variety of reasons (as others have mentioned), it's not always possible to go over other people's homes because of high meltdown factors. And having people over is challenging as well, especially if they have kids, for the same reasons.

Greenpa - Nope, this has nothing to do with birthday ups and downs and everything to do with the myriad of other random crap that happened last week. Most notably one family member telling us they would never babysit for us again. And this is the only family member we have in the area that is our emergency back-up person. This post was out of frustration and isolation and a whole host of other feelings, none related to Hank and his stuff.

The problem is that most of our family (on both sides) just doesn't know how to handle dealing with my kids. Oh, and, of course, it's because of our bad parenting.

Aimee - Yeah, I can commiserate with that. I guess my only suggestion is to keep trying - ask her if she would like you to come over so she can get a break for a few hours, go out on a date night, help out at home so she can catch up on chores. Whatever. But make it specific - I find open ended offers like "let me know if you need help" are just too hard to respond to.

Brad - Mainstreaming in public schools is generally done on a case-by-case basis. And, believe me, if there's a problem, the child is the one that suffers most. But, you are right - if the school can't handle a kid's behavioral issues, they can be a threat, even if it's not an intentional thing (in other words an involuntary reaction to the environment rather than something premeditated).

Some kids just get overstimulated and lash out in response and can hit or kick. The approach is to prevent that response by avoiding putting a kid in a situation where they short-circuit and do lash out. Does that mean they need to be taken out of school? Absolutely not, but the staff needs to know what triggers it and offer alternatives. It's not rocket science.

But, that said, I personally have been threatened by another parent to have my son removed because of his behavior. And, it's never one sided...

Rachel S said...

You still have me, faux sis. You and Hank have stood by us while we lost most of our friends. Dan is incapacitated but I'm sure as hell here for you. Schedule a date night and I'll babysit. Love you all.

Tiffany said...

Interesting reading this on the day I FINALLY get an official diagnosis of my 11 year old son... high functioning autism. We got have gotten plenty of blame over the years from family, friends, and schools. We were even asked not to attend church! And yes I have often lived in fear of my son or what he might do to a sibling. At times I have thought I will surely end up with PTSD.

Marti Caskey said...

These are definitely things that most parents of so-called "normal" kids don't think about. I find it especially hard to get the older folks on board with this. My girls have no physical or mental special needs, but I've been trying to learn as much as I can about Autism because I hope to do some therapeutic riding work specializing in Autistic needs kids some day when mine are in school all day.

The Horse Boy, book and movie, really opened my eyes to what daily challenges it is to parent a child on the spectrum. I wish every single person could watch that movie and read that book and then maybe, just maybe we can get some folks to realize that these children are struggling with things that most people don't even think about.

God bless you and your family Deanna and may you find the kindness and patience that you SO deserve.

LisaZ said...

Thank you for this post, Crunchy. It's good to find some solidarity with other parents here today. @Tiffany worries she'll have PTSD--I'm worried there will never be a "Post" in that equation. Sometimes having a special needs kid feels hopeless. Right now in the teen years, I'm not sure it'll ever get better. I have to hold on to some hope, which teachers and others in the know tell me is justified, that once puberty passes it won't, at least, be this hard!

Indiamommy said...

I have a child with bipolar disorder. It's very rough on all of us. When he is doing well, we want to be relaxed because he is well, but we are waiting for the "fall". It's very hard. Right now I have four more years before he goes to college. Waiting to exhale. I love my kid though. It's just very hard work! Most of my friends feel for us, but they don't understand it. Thanks for posting.

Anonymous said...

You have nailed it on the head completely!

My 18 yr old has Asperger's and although he has come a very long way since his diagnosis at age 10, there are still days I just want to throw my hands in the air and scream. Other days, I wouldn't have him any other way.

He's considered an adult now and that scares me the most. They expect me to send an eight year old eighteen year old out in to the world and expect him to fit in. Not happening.

jenny said...

Very true. Thankfully I have not dealt w/too many people blaming me or thinking my child is dangerous, but he's not yet 6. My online special needs parent friends are so valuable to me. I think that's where a lot of people find support these days because of #1.

Anonymous said...

Hi Deanna - My daughter is special needs (medically complex, I guess). At the risk of sounding like the ignorant people you are writing about, I was wondering if you had ever heard of the GAPS nutritional protocol. It's helped both of my kids (one is neurotypical). Just wanted to throw it out there because it seems like something you would be interested in.

Greenpa said...

Crunch: "the myriad of other random crap..."

ah, yes. Sorry about that- I'll extend an e-hug for you. <>

Yeah, there seems to be more than enough crap to go around.

My sister, a clinical psychologist, told me about what she called "The Lime Jello Phenomenon."

She'd been inside an institution, working with a deeply disturbed individual for hours. Going reasonably well- but- this person was incarcerated, struggling to stay on an even keel. Hard.

They got to the cafeteria; lunch together. There was lime jello.

And that was the breaking point- the patient lost control, couldn't handle just ONE MORE THING- and was muttering repeatedly as the attendants took her away for more medication "why did it have to be lime jello? I hate lime jello. hate it. hate it. why lime jello?"

Sometimes it seems there's lime jello lurking on a tray in our future, for all of us...

Anisah Bright said...

This post has made me feel at home. I have three boys on the spectrum, and they pretty much start each others quirks off sometimes. I guess my biggest problem is, what will happen when I am not here. If I out live them, I can't cope with being without them. If they out live me, then who is going to take care of them. I would just like to stop crying myself to sleep at night.

Crunchy Chicken said...

Yes, we have a lot of lime jello around here.

Anisah - Hugs.

MamaLovey said...

I will second the GAPS diet. It is very hard starting but once you get going the results will keep you sticking with it. My 4yo "mildly autistic" ( her official diagnosis ) has had amazing results with this diet. She began talking again (stuttering-mumbling but talking none the less) after just a week on GAPS.

I would put losing family in category #1 as well. My family had pretty much cancelled all future Christmas and Thanksgiving dinners because of us. It's sad really but cest la vie.

There is a great yahoo help group called GAPShelp for beginners and books are available at amazon or the library.

GAPS: Gut and Psychology Syndrome by Dr. Natasha Campbell McBride

For us as well two of the best things for her are Royal Jelly and organic sulfur. The royal jelly helps with brain functioning and b vitamins - she goes from jeckyl and hyde if she doesn't have it everyday. The sulfur helps with detox and everything else. Ecognitive.com has a great article from the director of the Cellular Matrix Study, Patrick McGean, about sulfur.

MamaLovey said...

I will second the GAPS diet. It is very hard starting but once you get going the results will keep you sticking with it. My 4yo "mildly autistic" ( her official diagnosis ) has had amazing results with this diet. She began talking again (stuttering-mumbling but talking none the less) after just a week on GAPS.

I would put losing family in category #1 as well. My family had pretty much cancelled all future Christmas and Thanksgiving dinners because of us. It's sad really but cest la vie.

There is a great yahoo help group called GAPShelp for beginners and books are available at amazon or the library.

GAPS: Gut and Psychology Syndrome by Dr. Natasha Campbell McBride

For us as well two of the best things for her are Royal Jelly and organic sulfur. The royal jelly helps with brain functioning and b vitamins - she goes from jeckyl and hyde if she doesn't have it everyday. The sulfur helps with detox and everything else. Ecognitive.com has a great article from the director of the Cellular Matrix Study, Patrick McGean, about sulfur.

jewishfarmer said...

I haven't found #1 to be true at all - although we have somewhat *different* friends than we might if we didn't have a disabled child. The old friends we've kept have tended to be very accepting, relaxed people who have known my kids from birth. The rest I don't think we've lost so much as discarded ourselves ;-). But there are plenty left, and we've made a lot of new friends. We're fortunate enough to have a lot who have done older child adoptions, dealt with special needs or had other challenges that have made them very relaxed and accepting about our son's behaviors. We tend to host a lot, too, which I think helps us maintain friendships and also keep our son in as comfortable an environment as possible.

I'm also going to say something I doubt you'll agree with, but I think it helps a lot to belong to a religious community. I know that isn't your thing, and if there's a secular equivalent of a community that sets up as part of its larger mission to be inclusive, I'd suggest that. Our synagogue isn't perfect, and we've certainly had our difficult moments there, but they have also supported us by providing additional childcare, aides for Hebrew school, a large number of people who know and love my kid and consider him simply a natural part of their community, despite his behaviors and also provide a constant reminder to the larger community "this is part of our larger mission, not just an individual choice to welcome the disabled." Again, not suggesting anyone in particular who wouldn't want to otherwise should join a religious community, and they aren't all alike (my aunt with an autism-spectrum daughter has not had much support from her church), but I do know a lot of people who find it helpful and we certainly have.

I don't think my other children do suffer, actually, although we'll have to ask them later, when they are a bit older. By and large I think they benefit - which doesn't mean there aren't costs.

I would add #6 - after they are small, don't expect to ever go out without a babysitter unless you pay a professional special needs sitter a buttload of money ;-). Grandmas can still handle him when he's in bed, but even that is coming to an end.

Sharon

Crunchy Chicken said...

Sharon - You're right about the religious community but I'd agree that it depends on the group.

And, I'd also say that having so many neurologically normal kids as siblings balances out the one autistic. If it were one-on-one, I would imagine the dynamics would be much different.

Finally, no Grandma *can't* handle ours. And that's the problem.

Trisha said...

Great post, I identify with Indiamommy though. I have a son who is bi-polar. Unfortunately I couldn't get a clear diagnosis until he was about 17 and he's 28 now. Certainly has been difficult and has actually has gotten more so since he went to college and then moved out. I no longer have any control over meds etc. and know he prefers not to take any. I live with the fear of getting that 2am phone call that he has committed suicide. Not easy to find a way to live with that constant gnawing in the gut.

The High Desert Chronicles said...

You hit the nail on the head! Not only will you lose some of if not all of your friends, how about family members who believe your child is going through a spoiled phase? Our child has life threatening severe food allergies to peanuts, tree nuts, soy, milk (all forms), eggs and wheat. We have special precautions that must be adhered to in order to keep our child safe. Does that keep extended family members and even members of our own household from walking around with out a plate underneath their food so crumbs fall everywhere? Nope! Or how about when they don't think anything will happen to the child if they just had a little ice cream? Making matters worse is the fact that our child has a neurological condition which makes it very difficult for her to actually speak to us appropriately. She has apraxia of speech as well as global apraxia, and even though she hasn't been labeled on the autism spectrum, we suspect she is riding that rainbow too! She's only 4 1/2 years old, and people don't understand why we can't come to their houses for dinner, or go to weddings and other social functions since she requires constant supervision and any food they put out can kill her.
The worst part, she looks great! She looks like any other normal healthy toddler, so I must be exaggerating right? LOL I must be the drama queen...nope! Truth is stranger than fiction, and with our special needs children we need to be their advocates even if it means that we lose everyone else in the world to protect them. :)

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