Wednesday, August 6, 2014

My 15 truths of parenting special kids

1. Parenting a special needs kid does not make you super hero. I seem to have given some of you the wrong impression. I am 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 feel really successful on the days I keep the laundry done, the house fairly clean, and the kids happy.

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.

They are so easy to love!
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 Tate and Sydney 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 future 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’ pain, anxieties, and fears are incapacitating and there is nothing we can do to relieve them. Sometimes when I watch Tate 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. 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.”

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.)


Riding the train at the zoo
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. 

Note: This blog post has done so well I decided to try another similar to it. Click to read "An IEP Tutorial: 13 Tips." 

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8 comments:

  1. I just wanted you to know that I read your blog on a regular basis. I do not have a child with Autism or FAS, although your description of yourself from a previous blog fits my older son to a T. Thank you for you Christian perspective. I read another Autism blog, and I appreciate your kind and thoughtful perspective.

    Why do I read your blog? I hope to teach my own children about kindness to others. To have them think about another's perspective before they make judgement. Keep blogging!

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    1. Thanks a lot! I appreciate so much when people are teaching their children about autism. I did not know anything about autism or any other kind of disability when my older kids were young. It means so much to me that my kids will be growing up in a world that is more aware.

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  2. I love number 11. So many people seem to have this notion or that "ALL things work together for good" which as you said, how do you reconcile that with disease and disabilities? God had a perfect world planned for us and sin ruined it. Sin is what still causes many problems today.
    I also like number 3. I think that is true of most parents. We know our kids. I've taken my daughters to the DR before and told him they were sick. He couldn't find anything wrong. So a couple of days later, I'm back at the DR because they finally have symptoms. We know our kids, what they need, what they like, what works, how they feel (somewhat). Why would we suppose a parent of a special needs child would know less about their child? They've probably done more studying about children than any of us.
    Love your posts. And your statuses are too funny. :)

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    1. Thanks for the feedback and thanks for the encouragement! I appreciate you!

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  3. Hi!

    I'm Megan, editor of TheMighty.com. I just came across your blog on our Facebook page, and I love it. I'd like to republish this entry on The Mighty if you're interested. I know our audience will connect with it. If you're interested, could you shoot me an email at megan@themighty.com? Thanks!

    Megan

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  4. It is such an honor to have this post featured on The Mighty! Thanks Megan for the opportunity.

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  5. Numbers 4 and 14 made me laugh because I do talk about my kids and their accomplishments a LOT! Even my close friends don't always realize just what a struggle it is for these guys to do what most of us take for granted. Just this week I've found myself explaining in detail how my youngest son chews, and how amazing it is that he ate a whole apple all by himself. LOL! Yep - I'm a special needs nerd. :)

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  6. I can honestly say as someone with Autism it's refreshing to see people who don't judge. I'm 28 and still have meltdowns (I usually call it the Red Zone but either way works) so I frequently have to hurriedly separate myself from my friends or even my wife. I feel humiliated that I just lose control except for aiming everything at myself. I can hear someone asking why the distance then? Well because I can't stand to let anyone see me in a nearly rabid state of self infliction. I told my therapist but he just laughed and told me to stop exaggerating. Anyway got a bit off topic but it's nice to see someone who doesn't write us off as monsters for that. So thank you for this post.

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