CPS, Special Needs, and Educating others about our differences.

by Jennifer Dyer

A disturbing situation…

A while back one of my fellow “ausome” special-needs moms called me in tears. Her voice shook, and she could hardly get her words out. “Someone from school called CPS on us.”

It wasn’t until a dozen phone calls and several days later that my friend found out the why. Turns out, the misunderstanding was rooted in the child’s sensory and food aversion issues. The situation had been under the supervision of the pediatrician and was/is a part of the therapy this family pursues. What is more surprising, everyone who has contact with the child at school knew all of this information. It was well documented with doctor’s notes and mom’s constant concerns and conversations with the teachers.

What happened?

Maybe it was miscommunication. I’m sure the person who called thought they were doing a good deed. On the other side, that person had access to the paperwork and could have done some more research into the situation.

Why am I telling you this?

This is not intended as a rant, but I want to encourage special needs parents to educate others about their children. And I want to encourage people to listen. This situation has been a nightmare of mine with all the issues Rachel has. For years I carried her diagnosis papers with me in case she became overwhelmed and stripped naked in public and someone got the wrong idea.

And people do question me…

A few years ago, Rachel’s  teacher mentioned people at the school expressed concern regarding the tangles in Rachel’s hair. Their first assumption was that I was a negligent parent. Fortunately, the teacher had gotten to know us and assured the concerned persons that Rachel had nothing to fear.

(In case you were wondering, Rachel’s severe sensory issues make it difficult to brush her hair and the fact that she constantly rubs a few spots on her head makes for huge tangles. We have had to cut out tangles, buy numerous types of hairbrushes, and use all sorts of conditioners. Here’s the best hairbrush solution we found.)

As much as it hurt to know people were questioning my parenting, AT LEAST THEY ASKED. And since I had built a relationship with the teacher and made her aware of the situation, she was able to answer.

CPS aren’t the bad guys…

When I mentioned my friend’s situation to a counselor friend of mine, she was understanding, but challenged me to see the other side of the situation. “If you died and your kids had to be taken care of by someone else, wouldn’t you want people to look out for them, especially if that anyone thought your child was in danger?”

Hmm.

True.

The counselor went on to say CPS workers are required to investigate every report they receive, but they aren’t waiting to snatch your children away. They want to work with you and to help you. She said as difficult as it is to see, remember that the person most likely filed a report because they were concerned about your child. And even if their intent was otherwise, the caseworkers want to help your family stay whole.

Easier said than done, but my counselor friend is right. There are children out there who need an advocate and to be protected.

I have hardworking friends who take care of children in serious and dangerous situations both as social workers and as foster parents. I respect and admire what they do. They have hearts to support and help children and families. And there are children who need help and won’t get it any other way.

But…I am thankful that the people who have been concerned about Rachel over the years have researched our situation before jumping to conclusions. And as Rachel’s mother, even if questions embarrass or annoy me, I am willing to answer if it helps people understand her more.

Fortunately, my friend’s CPS case worker dismissed the case, but my friend was hurt in the process. I’m not sure what she could have done differently in her case, perhaps have been even more vocal about her child’s issues? But I’d encourage others to be open and honest with information to help others understand your child, especially when the child doesn’t have a voice of their own.

And the next time you come across a CPS caseworker, give her a hug.

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As the clock turns. Time-change woes and autism.

By Jennifer Dyer

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Rachel has an amazing internal clock. She can’t tell time. But she knows what time it is.

So, that’s why every time the time changes, the rest of us look as though we’ve been run over by a herd of buffalo.

Eldest fell asleep at the dinner table. Hubby looked as though he had two black eyes from the lack of sleep. I feel as calm as a cat in a den of Dobermans.

And Rachel? It’s almost midnight on day three and she’s still screaming. At some point she will fall over from exhaustion, and we’ll get two or three quiet hours. But for now she is screaming, stomping, spraying water on the bathroom walls, and wanting to go downstairs to do who-knows-what.

Hubby is trying to sleep in her doorway. I’m camped out at the top of the stairs to keep her out of trouble. The dog is keeping our bed warm.

I don’t write this to whine. I write this for others who have kids on the autism spectrum … or off the spectrum, but are thrown into a circadian rhythm blender of fun each time the routine changes.

Sometimes it’s like fighting a hydra. Each time we attack and conquer a challenge, two more take their place.

There are times when I read my Bible in desperate hope for some big answer. It should be in there, shouldn’t it? Some formula to make Rachel better. Some prayer to snap her out of it.

But the reality is that some challenges have no easy solutions. Sometimes it is in the midst of those challenges that our best traits are refined and forged. Sometimes life is hard.

I want the situation to change so it’s not so hard.

What ends up changing in times like these is me. For the better.

I am blessed.

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As the Bus Turns … episode 3.

by Jennifer Dyer

Day two of the special ed bus chronicles started bright, not too hot, and everyone was up and going on time. I had Rachel’s lunch prepared the night before, so we were outside and ready long before the bus got to our house.

When it chugged around the corner, I gave Rachel the “Last Minute Mommy Speech.” In her case it was, “On the bus, your shorts stay up.”

Yes, when I first became a mother that was what I imagined saying before launching my kids off to school. “Play nice. Keep your clothes on!”

Life has a way of laughing at you…

So, there I was, trying to get through to my sensory-challenged, verbally-challenged daughter that it is best to keep her clothes on. She signed, “yes,” so I thought we were good.

She climbed onto the bus while hubby and I waved our arms off, tears in our eyes at our big girl and her big adventure on the bus. She sat in the front row. Got up. Sat in the second row. Moved to a seat further back in the bus. Moved back to the front.

A faint mommy radar signal off, “Ruh roh, Raggy…” But the rest of me–the part that keeps hoping fairies will clean my kitchen while I sleep–was certain everything was fine. I jogged back inside to get Eldest ready for school.

A minute later the bus was back.

???

Rachel had taken off her pants, she wouldn’t leave the seat belt on, wouldn’t stay seated, and was possibly staging a coup.

I wanted to hide. It was as if I’d opened a bag of my favorite chocolates only to find out it was filled with ants. It’s always something with my sweet Rachel. We run a marathon daily with her sensory issues, her food issues, her language issues, and I thought we had come so far with her clothes issues.

And I certainly never envisioned rooms in my home looking like: 

 

Why is everything so difficult?

The bus took off only to stop a few feet down the street because Rachel took her clothes off again. Tears blurred my vision. What must those drivers think of us? Did they skydive to the conclusion that we were the creepiest people on earth because our daughter sheds clothes in public?

As I slumped back to the house, I imagined all kinds of horrors. CPS pounding on my door asking why I let my child act so terribly. Scowling bus-driver faces every day, full of disdain for my child. A call from the school telling us her bus rights have been terminated.

So, I called a friend who would tell it to me straight.

“First of all,” she said. “CPS coming to your house is not the end of the world. Second, and more important, the bus drivers work with special ed kids. They know there will be challenges. Yes, you’re embarrassed, but I doubt they reacted as severely as it seemed. They probably just came back to make certain everything was OK.”

Sometimes I must separate myself and Rachel from her behavior. We are not defined by autism, but instead by what is in our hearts.

So, this morning, I put on a brave face as I walked Rachel out to the bus, still unsure how the drivers would react.

And you know what? They were kind and compassionate. They weren’t horrified or traumatized or ready to cast judgement upon me. In fact, they just want to help Rachel.

So, one of us–ahem, moi–needs to chill and embrace my not-so-normal life. 

 

On a side note, in preparation and because Rachel is so visual, I made her the following social story on the photo editor PicMonkey:

 

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We made it to the bus!

by Jennifer Dyer

This morning was a big day in the Dyer household. After much deliberation and paperwork, today would be Rachel’s first time to take the bus to and from school. I had plans for this day. I was going to take lots of pictures. Give the bus drivers cookies for taking care of my baby. Have a good cry, all by myself, because my baby was getting more independent. Hmm… Think it worked that way? Not in this house.

As we tucked Rachel into bed last night, I thought, Here’s an idea. Let’s give her something to look forward to. Let’s talk about the bus coming in the morning.

At four in the morning when Rachel kept coming in to stare at me, perhaps wondering if it was time to get up, I had another thought. It wasn’t ‘nearly as chipper as the one several hours earlier. Eek.

At some point, she finally fell asleep. Which was great, except we had to get her up. We stumbled through the routine–I’m still wearing a pair of shorts I found under my bed–but I had her outside and ready for first-bus-day pictures before the bus got to our house.

Except, Rachel didn’t understand she would get on the bus at our house. She thought we had to go to school to catch a ride, the same way she always does for field trips. She hopped in the car. I coaxed her out. She ran back into the car, pointing at the driver’s seat as if to day, “Let’s go, crazy lady!” I waved her out.

By the time the bus chugged around the corner, Rachel was back in the rear of the minivan. Eyes wide, she hedged out of the car, glancing at me, forehead wrinkled. Could it be?

Sadly, she had tucked her dress into her shorts and her hair was sticking up in three places. She’s taken my phone–formerly set to take pictures–and had it on a setting I’d never seen.

The dog, who’d been behaving like a gentleman, decided the bus was there for him. He lunged. Sadly, I was attached to the other end of the leash. Rachel must have decided to race him … while I was still trying to pull the dress out of her shorts.

Here come the Clampetts! 

I also made a new discovery. The bus driver’s assistant is terrified of dogs, especially big dark ones that run full tilt toward her first thing in the morning. And where were the cookies? Oh, yes, I’d forgotten to make them. So, instead offering an overture of friendship and goodwill to the people taking care of my precious verbally-challenged autistic child, I’d given them a jolt better than any coffee beverage could.

Yay. For. Me.

And as for pictures? I got one as the bus drove away. Another cheer for mom.

What about the good cry? Still haven’t had time to get it done. Maybe later…

I did get this video of Rachel while we waited for the bus in between her forays to the car.

Rachel waiting for the bus

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Summer fun with autism.

By Jennifer Dyer

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While older sister is off enjoying exciting camps and VBS activities, I’ve been at a loss as to what to do for/with Rachel. I know there are camps specially designed for children with special needs, but those are costly and aren’t every day of the summer. Plus, part of summer is having time to bond with the kids.

Today, Grandma and I brought her to the local mall. With an all-day carousel pass of $5, it’s a great deal. And early Tuesday morning is pretty mild at the mall.

Still, we aren’t only here for fun. This is a great opportunity for learning social skills, language, turn-taking, eye contact, and patience. It is also, for us, an opportunity to work on wearing clothes properly.

So, even though there aren’t many people here, I explained to the attendant that we would get on and off each ride, practicing waiting our turn. I ask her if she wants to ride again (yes/no question/response). We label the animals. Talk about the animal’s colors. I’m trying to get her to combine two words (color + animal).

She has to keep her pants pulled up properly if she wants to ride. We have to follow rules, including walking and wearing the seatbelt properly without complaint.

She has to look at me while we talk. We went into a store with the promise we could come back. She has to walk beside me and listen to where I ask her to go (following directions).

It’s like a therapy session and camp day all rolled into one for the bargain price of $5. And maybe someday my head will stop spinning…

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Talking to your kids about sex.

by Jennifer Dyer

There is something interesting about the way people talk or don’t talk about sex. What is so easy to discuss with friends over coffee causes parents to stammer, blush, and say to their children, “Ask again when you’re 30.” 

But we do our children a disservice when we act as though we are ashamed of sex or that it is something dirty. Instead, we should help them to see sex as part of God’s beautiful design for a fulfilling marriage.

How soon is too soon to talk to your kids about sex? As soon as they ask. You can let their questions lead what you tell them.

Years ago, a mentor told me about seeing two bunnies procreating in her yard while sitting with her three-year-old. Her daughter asked what they were doing.

She replied, “They are making love to make babies.”

Her daughter screwed up her face. “Do you and Daddy do that?”

My friend did not let the question ruffle her. “It’s different, but, yes.”

And that was it for a long time, but it started the conversation and kept it open from that point on.

Eldest didn’t ask any major questions until she was 10. It wasn’t that I wanted to hide the topic. She just wasn’t ready to discuss it. But I wanted to be ready when she asked because there is a plethora of misinformation, lies even, about sex hitting our children in the face every day through popular media. Even in the malls, we are bombarded with sexual images and messages.

We, as parents, need to be the first source of truth for our children about God’s beautiful design for sex. And it’s not a once-and-you’re-done kind of topic. There needs to be an ongoing dialog about sex and all it encompasses as your kids mature.

Kids crave information on sex. In his book, The Bare Facts, 39 Questions Your Parents Hope You Never Ask About Sex, author Josh McDowell points out “the word ‘sex’ receives more than four billion Google searches every year.”

 

That’s billion with a “B.” How many of those searches do you think are from kids? friend recently found the word sex searched on her 9 year-old daughter’s iPod.

 

One mom, eyes wide with terror, asked me what she was supposed to say. Here are some things I’ve discussed with Eldest, who is 11 as I write this:

  • Sex is what you desire to do when you love a person so much you want to be as close to them as possible.
  • God made sex for marriage, to be kept inside of marriage.
  • Sex is a picture of how deeply God loves us. The Bible uses the term “know” (the Hebrew word yada. See here for more info.) in regards to sex. It is the same term used many other times in the Bible describing how deeply God knows us.
  • Sex is like glue that puts a marriage together.
  • If you have sex with someone you aren’t married to, sex still “glues” you to that person.
  • There are chemicals in the brain released in sex that actually bond you with a person. This is wonderful in marriage. It will hurt you deeply emotionally if you aren’t married to that person.
  • God says sex is only for marriage, not because he is mean, but to protect you emotionally, spiritually, and physically.
  • The world–TV, music, movies, video games, and people–will tell you sex is just for fun and it can’t hurt you to play around, but those are lies.
  • Some people say it’s too hard to deny yourself any sort of pleasure. That is also a lie.
  • Your friends are not experts or reliable places to get information about sex.
  • Sex is meant to be private, between a husband and a wife. It is beautiful.
  • Sex also can create babies. There are all types of birth control available, but they do not always work.
  • People will talk about safe sex, but the only kind of safe sex you can have is when you are married and both of you are faithful to each other.
  • When you have sex with different people, you can get viruses, sort of like colds, only much more serious. Some of those viruses even cause cancer. (See here for more info on HPV.)
  • People can have sex and get pregnant outside of marriage, but that is not God’s best plan for you.

The world is full of lies about sex we must refute with our kids:

  • Sex = love.
  • Everyone else is doing it, so I should too.
  • It’s unrealistic to save sex until marriage with people waiting until their late 20’s to get married.
  • Sex in marriage is boring.
  • Sex is dirty and bad, and God doesn’t like it.
  • I’ve already had sex, so what’s the point in waiting.
  • Oral sex isn’t really sex.
  • Sex is no big deal. It’s just an action. It doesn’t mean anything.

All wrong. All lies.

In the above mentioned The Bare Facts book, Josh addresses and dispels many of the questions I’ve posed above. I’d highly recommend the book for parents and for teens.

(For an in-depth description of the deep meaning behind sex in marriage and the word yada, see Dannah Gresh beautifully address it here.)

The world wants to sell our children a different, cheaper version of sex that will leave them broken mentally and often physically. We, as parents and mentors, have to be willing to talk openly and often about sex to our kids, telling our children of its beauty, blessing, and boundaries.

If we, as parents, aren’t willing to discuss sex with our kids, then who will? And what will they tell our kids?

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Life adapted: soap and shower gel.

By Jennifer Dyer

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Rachel loves shower gel. She loves it so much, in fact, that we might go through two bottles per day.

I tried watching her, even not letting her shower alone. I’ve also tried over the last four years to teach her how much gel to use with each shower.

But she insists. I think some if it is due to her obsessive compulsive nature, in addition to the autism, anxiety, and apraxia that cloud her mind and communication.

If Rachel opens something, whether it be a container of lemonade, glue, or soap, she wants it finished, empty, and discarded (sometimes into the carpet) so she can move on to the next thing. Other people I have known with OCD tendencies say this is common.

But the constant waste does little for my own anxiety. Understanding where she is coming from helps a great deal. And so does finding solutions to help us both.

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In the shower, I installed a second shower caddy above the shower, about 7′ high. I have to stand on tippy toes to reach everything, but it helps.

I try to put a little bit of gel in the containers she can freely reach, a trick I learned from Grandma. I also continue to show her by modeling how much soap to use and verbally prompting.

In my case, at least, Rachel likes to learn the rules for how things work, but I have to remember sometimes it takes years to teach her a concept.

Sometimes the years part gets to me. But have you ever wondered about God’s patience with us? I’ve struggled with some of the same issues for years. Yet God is far more patience with me than I am with my own children. And that is something for which I am thankful.

Lord, thank you for your patience!

How about you?

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