To the People I've Seen Less Since Becoming a Parent to Children With Special Needs

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All parents know how hard it can be to make time to see friends and family when you have kids of any age. Young children have early bedtimes, kids in school often have lots of extra-curricular activities and teenagers have busy social lives and interests that require a lot of attention. If you have more than one kid then you just multiply that busyness, and if you work then you’re often trying to squeeze all of that in around whatever demands your job places on you, and many times your job doesn’t give a shit whether soccer practice starts at 6 across town or your kid got bullied in the lunchroom. That’s not your job’s job, so to speak.

If you have a kid that doesn’t fit the normal spectrum of kid development or behavior, then you can pretty much kiss life outside your home goodbye. That’s what it feels like sometimes, anyway. Explaining that to someone who isn’t in your shoes can be tough.

lucyplayground I’m blessed with an enormous family. Various partnerships left me with five parents and seven siblings, many of whom now have partners and children of their own. Negotiating time with everyone has always been a joyful challenge but has become even more so with my kids and their specific needs. That doesn’t leave much time for friendships, either. I’ve never been the type of person who had a huge group of friends and acquaintances. I’m pretty choosy and most of my friends have been friends of mine for many years. I like to say that I make a new close friend every decade or so. My husband has a million friends; he’s the social butterfly. There’s always someone who wants to have dinner or go to a show or whatever. We just can’t do that anymore.

It’s hard to explain to someone — particularly someone who has kids and has figured out how to have a life of their own — that you can’t deviate from your schedule, or that your kid doesn’t do well in certain environments or that you’re just too damn tired.

When you have a kid who is highly sensitive and has sensory issues and delays, schedules and routines are the glue that holds life together and makes your child feel OK. Sure, all kids like routine and feel more secure when they know what’s going to happen, but for kids like my “L,” it can mean the difference between five hours of sleep or two. It can determine whether or not you deal with a tantrum that ends in vomiting — so can the sensory input in different environments like, say, at Target or Chili’s. Too many people, too much noise, too many things to look at can be completely overwhelming. It can exhaust your child in no time flat.

Many, many kids and families with these issues also deal with sleep disorders. It’s incredibly common. For three years our family has lived with the sleep patterns of a newborn. Because L has been breastfed, and that’s been a primary source of comfort, that means that sometimes I wake up every 20 minutes. All night long. A good night is five or six hours of sleep. One night I got seven, and I mean one night. I was so unused to a decent night’s sleep when it happened that it freaked me out, and I was sure there was something wrong with L.

Figuring things out with L has been like putting a puzzle together; we’re finally making progress after changing L’s diet, adding in several different supplements and experimenting with different sensory items — none of which were suggested by our doctors, many of which were suggested by our therapists and naturopath. There have been many ignorant and unhelpful solutions offered by different folks here and there — “She’s spoiled; you need to let her cry it out” being one of the chief suggestions. I can’t think of anything worse for a kid with sensory issues and separation anxiety.

These days, I may get five to six hours a night pretty regularly. I can live on that. But when it comes to entertaining, or going out somewhere with or without the family, many times I just don’t have the energy. And worse, if I have a moment of quiet to possibly make a phone call, many times I don’t have the energy for that either. I simply don’t want to talk. I want to close my eyes, or read a book, or watch a rerun of “The Office”… I don’t have the energy for conversation. I left it all on the field, if you know what I mean.

So friends and family get the worst of that. They get neglected and time goes by and all you can say is, “I’m sorry, I’m so tired,” and it seems pretty feeble. A lot of times my family or friends have invited me over for dinner, and even that takes too much energy and also can’t be controlled… we really do have to leave by 7 to avoid a terrible chain of events that leaves us all seriously depleted.

All I can say if you are one of those people is that you’re in my heart. I think of you often. I love you so much. Please forgive me for not being there. I will be again, one day. Just not today and probably not tomorrow. But I do love you, I do. I do. I do.

And if you’re not one of my people, but someone in your life has a kid with any kind of special need, please forgive them if they aren’t there in a way they once were and love them even harder from afar.

This post originally appeared on Mom in Uncharted Waters.

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This Is What the Autism Commune in My Head Looks Like

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There are times in the middle of the night — when I get all woe-is-me because my kid won’t sleep — that I’m so grateful for my cyber friends who are up with me, either because their kids aren’t sleeping either or they live in Australia. (I love the Aussies! Holla!)

And then I imagine what it would be like if we all actually lived together… in the beautiful autism commune in my head. Would you like to take a tour? (This is not real. This is in my head. I promise I’m not trying to sell you a timeshare. Go with it.)

First of all, it’s not really a commune. It’s more like a gated community. I’m claustrophobic, and I would have to leave once in a while. Anyway…

Welcome to Spectrum Estates, a judgement-free zone for families with autism. Our community, bordered by a fence, has a security staff specially trained in helping folks on the spectrum.  Lifeguards are on duty 24/7.

peace Our streets are arranged according to sensory-sensitivity. Sensory-avoidance homes are landscaped during the week while the children are at school. The houses with sensory-seeking kids are landscaped on weekends so the kids can stim off the lawnmowers. Ditto for leaf blowers and snow plows. We don’t worry about spraying for mosquitoes because this is my fantasy and mosquitoes don’t exist.

The climate is warm; clothing is optional. Obviously.

There are several restaurants that cater to every possible food allergy and offer seating choices based on sensory preference. Need booth seating for four in a noisy room full of music and balloons? No problem! Need a quiet corner with plush seats and bland food? We can do it! Our date night restaurant features a separate respite room that serves platters of tater tots and Yoo-Hoo. There’s something for everyone!

Here at Spectrum Estates, we have a community center with specially-designed rooms for obsessions of all kinds. Be sure to visit our displays of model trains and vacuums! Our community center is a place for therapy and playtime, as well as respite care. We have a gym, pool, climbing wall and carousel. There is a tiki bar — no cash necessary. Expenses are covered by member dues and puzzle piece magnet fundraisers. “Support Autism. Buy This Mama a Mudslide!”

One of the best features of the community center is the Moonlighters room. Softly lit and lined with comfy couches, it is a safe place for sleepless children to be sleepless while parents nap or keep each other company. A selection of bean bag and swing chairs are arranged in front of a number of dim screens featuring soothing favorites like Good Night, MoonBaby Einstein, and Tales from the Tracks. We shuffle around in our pajamas and snuggies and clutch cups of coffee or beer. It looks like finals week in college… only with kids.

The center offers social activities and support for the siblings as well. There’s a specially-stocked kitchen in the Sibling Station full of all the junk food we can’t keep in our homes. They can eat gluten and food dye to their heart’s content! We have movie nights featuring anything other than Thomas the TrainThe WigglesBlue’s Clues, and Fraggle Rock. Be sure to stop by for our helpful weekly seminars covering topics such as “So Your Brother Dropped Trou in Front of Your Girlfriend” and “Making Echolalia Work for You!”

And of course, the Spectrum Estates activities director organizes plenty of social and wellness events for the parents — yoga, book clubs, wine-tasting classes, wine-making classes, cooking with wine classes…

Everyone is invited to the birthday parties. Nobody gets mad if you can’t make it. The playground always has enough swings and the trampolines are surrounded by crash-pads. If your kid wants to wear a Santa hat in June, nobody asks why. If your child insists on showing neighbors his plastic bug collection, there’s no need to apologize. If your kid is naked in the front window, nobody will notice.

“Spectrum Estates: Where People Get It.”

Happy Hour is at 5:00.

This post originally appeared on Another Effin’ Autism Blog.

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When I Overheard a Conversation Between My Son With Autism and His Brother

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Author note: The following was a conversation I was lucky to be privy to between my two sons over the course of about 20 minutes. I’ve omitted several things for privacy and cleaned up others, while trying to keep the language as close to the original conversation as possible. I received both sons’ permissions before publishing this.

“Morgan,” Bay asked, “what’s it like to be you?”

The question was asked as the boys finished dinner, and I sat away from them, reading a book. I marked my place and quietly listened.

“Well,” Morgan said, “it’s confusing. You know I’m an autism kid. Noises are big. Clothes have to be soft. Smells are hard.”

He went back to eating, apparently satisfied with his answers.

“But, Morgan, what’s it like? Why is it confusing to be you?”

Morgan took a deep breath, pondered this question some and then said, haltingly, “People think I don’t listen, but I do. Teacher always says, ‘Pay attention, sweet boy!’ but I am paying attention. It’s hard. I pay attention to everything, all at the same time. I can’t pay attention to just one thing… I can’t always use my words. There are all of these sounds and thinks [thoughts] and I can’t just pick one. Can you?”

I sat, stunned. Morgan’s never talked to his father or me like this. We’ve never been able to get him to talk to us like this.

“Morgan,” his brother started, “why do you script? Why do you use Thomas so much and love him so much?”

“I just do. The stories are in my head, ’cause I’m a narrator. I love Thomas; he’s my friend. He’s a very useful, cheeky engine.”

“But you know, other kids don’t like him as much, right? I mean, aren’t you worried about bullies? Why do you talk like that [meaning nasally quality/monotone and scripting]?”

“I don’t care if they don’t like him. Mama says he’s mine to love. Mama and Daddy say bullies just don’t get hugged enough. I told you, I talk like this ’cause Jesus made me this way. Now, stop being a bossy boiler or this conversation is over!” [Note the script]

Me: “Morgan, is there anything that’s really hard for you?”

“Yeah, people when they give me too many directions. That’s hard.” Having my own struggles with this, I agreed with him. “Going new places used to be bad, but sometimes it’s fun now. But not too much. Rounding [numbers]. Noise. Making people understand me.”

“Haircuts used to be really hard, right?”

“Yep, but they’re not so bad now. The hairs still feel like poking on my skin, and I’m scared my ears’ll be chopped off.”

“Mama won’t cut your ears off–”

“But I feel the scissors coming in! My brain tells me my ears are in danger and I need to yell!”

“What would you make people understand?”

“I need to chuff [when he makes train noises and moves his arms in a circular motion, bent at the elbow]). I’m a good boy and really useful. Don’t talk about me in front of me. Kids shouldn’t make fun, the grownups, either. It’s mean. People should understand people.”

I started tearing up.

Bay: “What’s easy for you? You’re good at lots.”

“Making breakfast [he makes English muffins with cream cheese every morning for himself]. Thomas stories. Tying my shoes. Making train sets. Snuggling. Smiling. Laughing. Swimming. Remembering the way.”

“What’s your school like?”

“It’s big like a cave. It full of noise and echoes. I don’t like the gym. It’s confusing and fussy. Everyone is very busy all of the time and when you’re not busy, they give you more work. It’s all work, work, work. Mrs. C’s room is great. That’s where I go for sensory breaks. I have the bean bags, the stimmy toys, all of that. It’s quiet in there, I can tell train stories. Have you heard of the [slips into a Scottish accent] twins, Donald and Douglas?”

“How come you don’t have friends come over?”

“Because this is my home. I have school friends. They’re at school.”

“Don’t you want to play with other kids at home? Other than me?”

“Sometimes. It’s not important to me. I like you, Bay. Any other questions?”

“Do you like being autistic, Morgan?”

“Do you like being redheaded?”

“Um, I don’t know how to not be redheaded.”

“Well, Bailey, I’m an autism kid. I don’t know how to not be one. I like being me, even the hard parts.”

I like that Morgan covered the important stuff.

two sons peaking out from behind a police public call box

 This post originally appeared on Deciphering Morgan.

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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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