My 15 Truths of Parenting Special Kids

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1. Parenting a special needs kid does not make you a superhero. I seem to have given some of you the wrong impression. I’m not Supermom, not even close. I rarely cook anymore. Most of the time we all eat different foods at different times — especially in the summer months. I don’t spend enough one-on-one time with any of the kids. I lose my patience and raise my voice occasionally. I spend way too much time in the pool and hanging out on the computer. I feel really successful on the days I keep the laundry done, the house fairly clean and the kids happy.

Sydney and Tate 1 2. Parents of special needs kids have a lot of insecurities. Sometimes I don’t know what to do. I’m winging it here. Oh, I’ve tried to read all the right books and surround myself with people who can advise me about my kids’ disabilities, but I’m the one who makes the ultimate decisions, and sometimes I do not know what the right decisions are. These disabilities are spectrum disorders. There is no one treatment or therapy that works best for all kids with special needs. What if I do the wrong things? What if I miss the things that would have helped them the most? What if I mess this up? Even though we have insecurities, I still believe #3 to be true.

3. (In spite of #2), Parents of special needs kids are experts… on their own kids. I could never claim to be an expert on autism, Fetal Alcohol Syndrome, or ADHD, but I do know my kids really well. When a teacher or doctor tries to tell me what is best for my kids instead of asking me to collaborate about what is best for them, we will not make any progress. Spending short amounts of time with a special needs kid cannot begin to compare with the investment the parents have made. Parents of special needs kids want to be asked, not told, how to best interact with their child because we are the experts.

4. Parents of special needs kids like to talk about their kids… a lot. Something seems to happen to women when they give birth. The number one topic of conversation is no longer clothing, hair products, recipes or movies. The conversation now revolves around their child. Parents of special needs kids are no different. However, we tend to flock together and talk about our kids’ disabilities and therapies and their school situations. I tend to turn almost every conversation I have with anyone, anywhere, anytime, into a conversation about autism or ADHD. I cannot seem to help myself. I am sorry, friends.

5. Parenting special needs kids is sometimes lonely. I am lucky in that I got to do this five times with typically developing children. But in some ways that may make it a bit harder because I know all the things my special kids and I are missing out on.

6. Parenting special needs kids can be exhausting. Yeah, I know; all parents are tired. Remember, I did this with five typically-developing kids. I know the difference between being tired and being exhausted. It’s not just the physical rest that we sometimes give up. There is so much stress. A disability often taxes a family emotionally. Typically-developing kids grow up. They learn to do things for themselves. They eventually leave home. Think about it. Now, are you really that tired? I’m really that tired. Really.

7. Many parents of special needs kids hope for the best but prepare for the worst. We know where all the exits are, carry a bag of emergency supplies and have a plan B in place at all times. There are these things called meltdowns. They may look like temper tantrums to you but they are not comparable at all. Meltdowns are not usually triggered by anger but are from anxiety or sensory issues. Meltdowns are not something a child can really control easily. Meltdowns can ruin a gathering. Hoping for the best and preparing for the worst also applies to the long-term as well. Parents of special needs kids have to have very flexible plans for their children’s futures as adults. Many of these special kids will never “grow up.”

8. Special needs children are expensive. They require therapies, doctors, medications and schools that typically-developing children do not. One of the things we hear a lot is, “You get help with all of that, right?” I always want to laugh. Just who is supposed to be helping us? The federal government? The state? The insurance company? Who? We mortgage our homes. We take out loans. We work extra jobs. We do without things. We use our savings and our retirement accounts. Parents of special needs kids are often deep in debt.

9. Parents of special needs kids hurt when their kids hurt. Sometimes our kids have to do really hard things, academically, physically or mentally. And we just have to watch, hands tied, while they struggle. Sometimes our kids’ pains, anxieties, and fears are incapacitating and there is nothing we can do to relieve them. Sometimes when I watch my son pace, wringing his hands, or even breaking out in hives, because he is fearful of what lies ahead, I become physically ill myself.

10. Parents of special needs kids need encouragement, not pity. We are proud of our kids. We celebrate smaller milestones than you will for your kids, but they are just as precious to us. We love our special kids just as much as you love your kids. We do not often feel sorry for ourselves. We are not ashamed. An encouraging word means so much to us, probably more than you will ever know.

11. (Similar to #10) Parents of special needs kids hear a lot of clichés. “Everything happens for a reason” and “God only gives special kids to special people” are two that I hear the most. Neither of these things is even true! Think about it. If everything happens for a reason then children are abused for reasons. Rapists are out there for a reason. Cancer has a purpose. The second cliché is no better. Lots of special needs kids are born into families that hurt them instead of help them. I hate clichés. I’d rather hear, “I prayed for you today” or “Your kids are sure making great progress.”

IMG_0877 12. Sometimes, once in a while, there are a few of us, not many mind you, but a few of us parents, who feel guilty. What if I had not taken that cough syrup while I was pregnant? What if I had not used all those cleaning products while I was pregnant? What if we had started the early intervention sooner? What if we had tried harder and done more therapies? Sometimes we think about these kinds of things… but mostly we don’t.

13. Sometimes parents with special needs kids are defensive. There are reasons for it. Some of us have had a few really bad past experiences with our kids’ peers, other parents and teachers. We have learned from past incidents that not all children or adults are kind to us. We are hoping it won’t happen again but know we need to be prepared. Also, we know people are watching us and our kids. We are different and we know it.

14. Despite #13, Parents of special needs kids are approachable. We want to spread awareness about our child’s disability. Ask us your questions. We will answer them. We would much rather explain the how and why than have you guessing and misunderstanding. Don’t stare but come over and ask us what you want to know. Remember #4, we love to talk about our kids just like you do and we don’t bite. Our kids don’t either (usually).

15. Parenting a special needs kid is rewarding, more so than anything I’ve ever done. The small things are often huge in our worlds. The things we learn from our kids and their struggles could never be taught using any other method. I had heard it before I had my own special kids: “He has taught me more than I could have possibly taught him.” I used to wonder what that could really mean, imagined that I might know; but I did not. I’m not sure anyone could understand without walking in the shoes we walk in. It’s life lessons we learn. It’s compassion, patience, joy, and empathy on a level that no one could have ever described to me before I became a parent to a special needs child.

This post originally appeared on quirks and chaos.

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When You Get Your Child's Diagnosis, Remember This

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When we have children, we have plans.

They’re not even out of the womb, and we have plans. God, did we have so many plans. To think back, we parents started planning our future and future of the little human we carried the minute we found out we had created something wonderful.

We had all these hopes and dreams that we wanted for our little one. Maybe the next President of the United States or a professional sports player. Or maybe just a decent human being who we as parents could be proud of in our old age. All these plans we put into place when we started having our kids.

So what happens when you have something that puts roadblocks in front of your plans — those little things life throws at you, just to make things interesting?

I’m not going lie or sugarcoat things. When a parent is sitting in a doctor’s office hearing news that will forever change not only their life but the life of their child, there is a range of emotions that occur. No parent wants to hear there’s something ultimately wrong with their child. Whether it be a disease, a syndrome or a disorder. It doesn’t matter how big or how small this thing is, it’s a game changer. You look at this child, this sweet, sweet child, and all of us think to ourselves, quietly, “Why them? Why does it have to be them?”

We have our periods of disbelief. We can’t fathom just what this means. And there are some of us who refuse to acknowledge what’s going on. We see those plans we hoped and dreamed about flash before us, and it’s almost like watching a balloon float into the sky. We try to grasp at it, but it’s beyond our reach. We’re all but lost to our emotions and that sense of dread. Most of us grieve, not for the child, but for what the foreseeable future will hold for them. We grieve for the battles they will have to fight, as we know it’s a cruel, cruel world out there. These feelings are very common when parents get news about their child that alters the way they will have to live their lives.

It’s OK. It’s OK to be angry. It’s OK to be sad. It’s going to be hard, but you will get through this. 

At times, when we get news about our children we want to know everything there is to know about what is affecting them. And we want to know how we can fix it. But for some, it isn’t an issue of fixing it, it’s the way to live with something. It’s how to adapt. Work with something rather than against it. Sometimes that means more doctor appointments, medication or just changing your lifestyle to include every aspect of your child. Beyond the labels, there’s still this child who needs to grow and prosper.

The important thing to remember is that when you get difficult news that concerns your child, they’re still the same child who you look upon with wonder. They’re still the same child who pushes your buttons. They’re still that little human who made you parents in the first place. And without them, you wouldn’t know what it’s like to be selfless or compassionate. They’re the ones who teach us how to fight.

You haven’t stopped being their parent or loving them any less. Now, instead of playing that one game you know the rules to, you’re just playing a different game, with slightly different rules.

But the team is still the same.

This post originally appeared on Spouse, Kids and Special Needs Aren’t Issued in a Seabag?

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10 Things I've Learned From Being a Special Needs Parent

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10. Keep your judge-y panties in check. I can’t tell you how many times my son, Timothy, and I have been victims of judgmental eyes. And until it happened to us, I had no idea how it felt. It sucks, people. Please don’t stare at my child when he is lying on the floor in Wal-Mart or flapping at the lunchmeat in the deli case at Zehrs.

9. Keep your parenting advice to yourself. For reals! Nine times out of 10 that mom and/or dad are doing the best damn job they can. They have taken hundreds of hours of “Parent Learning” courses. They spend every spare minute working with that kid. The wringer? They’ve been through it. It’s likely they’ve heard what you have to say already several times. It’s offensive, so please don’t. (I say this with love).

8. Live for the moment. Those dishes? They’re not going anywhere. Neither is the laundry. As long as you have clean underwear for the day, you’re good. A clean house will have to wait, ’cause my kid won’t. Let it go.

7. The meaning of ABA, IEP, IBI, TAC, OT, PT and the principal’s phone number by heart. (Insert eye roll here, please)

6. The short bus is awesome! It comes right to our drive way. Less work for me. Roll on, short bus, roll on. You rule.

5. Milestones are overrated and not made for every kid. Timothy still wears diapers and he is almost 7 years old. He just started to feed himself this year with a spoon. We had a party! Make up your own rules, and don’t conform to society’s. You’ll be so glad you did.

4. Learn to appreciate the little things. Peeing on the toilet warrants a trip to McDonald’s for fries around these parts. When my son said, “I love you” for the first time at 5 years old, I wept with joy and gratitude.

3. Respite care is awesome. We’re lucky enough to score 6.75 hours of one-on-one for Timothy each month. Yes, I love him, but having a shower alone is a gift from above!

2. Stop taking yourself so seriously. I live in sweats. I rarely have time to put on makeup, so brushed teeth and clean hair is what it is. If there’s time to sleep and clean the house, it’s a special day. I’ve lost friends along the way but made way more.

1. Don’t be afraid of different. Get to know different. You may be surprised at how incredibly awesome different is. I know I was.

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This post originally appeared on The Book of Timothy.

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‘Parenthood’ Show Creator Talks About Who Inspired Character With Autism

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On Thursday, Sept. 25, the sixth and final season of NBC’s “Parenthood” premiered. If you’re unfamiliar with the show, it follows an extended family — the Bravermans — through their ordinary but often challenging lives. The show’s been praised on all ends — its cast and script are excellent. But it’s also been notably lauded for accurately portraying a character with Asperger’s syndrome, an autism spectrum disorder.

Perfectly anaylyzing this is BuzzFeed’s Emily Orley, who — in her excellent feature — reveals that the character with Aspergers, Max Braverman (played by Max Burkholder), is based off the son of show creator, Jason Katims. He told BuzzFeed News:

I didn’t know that we could do it because there weren’t any shows or movies that told the story of a kid with Asperger’s. I was worried. Would everybody reject it? Like, This doesn’t relate to me. It’s depressing. Would it just be a point of people turning away from the show? And would we be able to do a good job telling the story, representing in some way what the experience is really like for a family dealing with this? And I didn’t know the answer to that.

Don’t miss the full BuzzFeed News feature here.

In its six seasons, the response to Katims and his team’s portrayal of autism has been largely positive. In 2010, Burkholder, who plays Max, told Disability Scoop that a girl with Asperger’s syndrome wrote him a letter applauding his performance. More recently, Psychology Today columnist and clinical psychologist, Mike Friedman, wrote:

By shining a light on the struggles of people with Aspergers and their families, ‘Parenthood’ continues to clear away the stigma of Aspergers so that more and more people understand the issue and root for people like Max… to lead full and healthy lives.

 

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We Didn't Listen to This Advice... and That Has Made All the Difference

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We heard it at every turn.

“She’ll be fine.” “What are you so worried about?” “My friend’s kid didn’t talk till he was 4.” “She seems normal to me.” “You’re being paranoid.” “Don’t worry; just give her time.”

But I knew. I knew Lila was different. She was our first child, and I still felt it was fairly evident from a very early age. Something wasn’t right. She had terrible colic from the beginning and would scream for hours and hours on end. She had GI issues and sleep problems as well.

The closer she got to 12 months old, the more evident it became. Lack of eye contact, lack of response to our voices — I honestly thought she was deaf. She was never a fan of people other than my husband, Bill, and me, and she was a mess if we strayed from our normal routine.

Along this journey we were accused of “creating the problem,” “self-diagnosing” and a myriad of other incredibly hurtful accusations.

mom and daughter smiling at each other with the text 'we didn't listen... and that has made all the difference' Through it all, Bill and I stuck to our guns, which was not easy to do. As a mother, nothing made me feel worse (and more “Münchausen-y”) than people insinuating that we were self-diagnosing — like we wanted something to be wrong with Lila. It absolutely killed me. It would have been so much easier to bury our heads in the sand and pretend nothing was wrong. Trust me, there were times we both desperately wanted to do that.

But Lila needed us, and we were determined to do every single thing in our power in order to find out if something was actually going on with her (and if it was) to confront it head-on as soon as possible. If we were wrong… great! No one wanted that to be true more than Bill and I did, trust me. If we were onto something — Lila needed our help.

After her initial assessment, Lila started therapy with SoonerStart when she was 15 months old. At that point, she would barely even acknowledge my husband and me. She was often in her own little world. It was scary at times, when I couldn’t get to her. I was terrified that we’d lost her.

She was officially diagnosed with Autism Spectrum Disorder at 21 months old.

We still have a very long road ahead of us, but we have come such a long way in the past 11 months — and we are so beyond grateful. The little girl we have now is not the little girl we would have at this point had we not stayed true to ourselves, to Lila, and worked with her every single day.

Because we didn’t listen to everyone else, Lila’s future was forever altered — in a positive way. Early intervention completely changed the trajectory of her brain and social development. I cannot say enough about early intervention and how important I feel it is. My only regret is that we didn’t know more and start earlier.

If you know in your gut there is something different going on with your child — please listen to that voice. Don’t give up, no matter what. It could very well mean all the difference for them and their future.

This post originally appeared on Dancing With Autism.

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6 Arguments for Using the 'R' Word... and 6 Reasons Those Arguments Make No Sense

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My older brother taught me two very smart lessons.

1. Never play kid music in your car. Unless you want to listen to Cailou‘s Greatest Hits for eternity. Your car, your music. Good advice, Big Bro. (That’s why my kiddo requests Queen and James Taylor when we drive.)

2. “The hill you die upon.” He was saying it in regards to a person we both knew who had started a Facebook scuffle. The topic? The “R” word. On my own personal profile page. One person just could not wrap his head around the idea that this might be offensive, demeaning and just plain hurtful, despite my own and others’ request to drop it. I will never forget talking about it later with my brother, and how he just summed it up perfectly. “That’s the hill he wanted to die upon? Really?”

In case you haven’t figured it out by now, autism is one of the hills I will do battle on. Spreading the word to end the word is another. Let’s just take a moment and explore the stages of a person who uses this word and is corrected for it. Most of the time it’s a case of they-just-didn’t-think-or-know-better. They usually make amends, and we all move on. But there are others who cannot take being told their speech is offensive. These are the arguments usually used:

1. Free speech protects you. Yes, it gives you the right to say it. It also gives me the right to react to it. It doesn’t protect you from hearing my retort because that’s also me using my right to free speech. Isn’t it marvelous how that works?

2. You’ve been asked to not use a word you used to say when you were on the playground as a 10-year-old. Haven’t you changed since then? You used to think New Kids on the Block was the best band ever. Still do? Didn’t think so. Perhaps it’s time to embrace that using the word “retard” or saying “that’s retarded” makes you sound about as outdated as an 8-track player.

3. You can’t understand why I get so worked up over this word. I can’t understand why you get so worked up over defending your right to it. Hear what I am about to say. You’re not offended until it affects you. Then you will be up in arms. So understand this is my up-in-arms moment and always will be. This is the hill I am willing to die upon. I have a son with autism so, of course, this is extremely personal to me. Look around, my friend; autism is everywhere. Closer to you than you might even be aware of, and I haven’t even touched on those with other disabilities. If you’re kind enough to hold a door for someone, why can’t you hold your tongue about a single word?

4. Oh, you want to bust out a dictionary and point out how this word is used in music? How right on the sheet music of a song you see it alerting the reader the song is to be played slowly? Yeah, are we really, at this moment talking about that? We’re not. You know it. I know it. You know when you hear someone use that argument of, “Oh why can’t I say the ‘N’ word cause rappers do?” You’re not Jay-Z. And no, I’m not a fan of that word either. When you defend your right to use the “R” word, that’s what you sound like to me. Just as ridiculous. You will never hear my son refer to another person who has any sort of intellectual disability by this term and mean it in some endearing/bonding way. Nope.

5. Oh, it’s a medical term! Yes, a completely outdated and no-longer-used one. If you see a doctor who still uses it, I urge you to find new medical care. Chances are they aren’t up on a lot of medical information either.

6. Things can be fire retardant. Why yes, they can be and thank goodness for such a technological advance. I am rather firmly against things catching fire. I am also against you pretending this argument is valid when you try to compare fire retardant-treated items and the phrase, “That’s retarded!” as the same. It’s not. One keeps kids’ pajamas from catching fire. The other is used to liken a human being to an object that no one wants or values.

It boils down to this. Be kind. Compassion is missing far too often in this world. You may say, “I didn’t mean your kiddo,” but here’s the thing. You referred to somebody’s kid. Another human being who has a family and friends. Likes and dislikes. Strengths and weaknesses. Something to offer this Earth we all live on. If you have not already, I urge you to take the pledge to end the word at http://www.r-word.org/.

We all have many battles to fight, but don’t let this be the hill you choose to die upon. Choose kindness. Choose empathy. Choose anything but this word.  Choose to have an open mind.

 This post originally appeared on Autism With a Side of Fries.

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