myverywildchild

The chaos and mania of parenting a child on the spectrum


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Hair-Brushing Nightmares and Sensory Processing Disorder

All little girls hate having their hair-brushed, right? Honestly, my boys aren’t all that thrilled with it either. My son, with his “hockey hair,” avoids it like the plague, and with “hat-trick skills,” shoves it into a hoodie or snow hat before I can catch him in the morning. But my daughter cannot get away with this as easily. First of all, she doesn’t want to go out of the house looking like she has just played three periods of pond hockey in sweaty goalie gear…she wants to look like Rapunzel. She wants me to put waterfall braids in her hair, and intricate twists, and bows… never-mind that I barely have the skills to put a ponytail in her head without it snapping, or that while I’m doing this she lets off high pitch unmerciful screams so horrendous that I am shocked the neighbors haven’t called the police.

She has extreme sensory process disorder (or dysfunction) that mostly presents in her sense of touch. Those with children with sensory processing disorder understand far too well that the reaction to even normal, ordinary sensations is dysfunctional. So if something is uncomfortable or mildly painful to a typical child, than the child with sensory processing disorder not only reacts, but truly experiences extreme and intense pain. Having her hair brushed is agony for her. (If you’re unsure whether your child has spd or simply dislikes having their hair brushed, check out: Top 10 red flags for Sensory Processing Disorder, at sensoryprocessingmadesimple.com)

My mother told me she’d just cut it off. Like she did to mine when I was eight and she had them cut it into “the Dorothy Hamill”, for which I never truthfully forgave her.   I can’t do it. My daughter wants to grow her hair to her waist. Another friend told me that maybe I should teach her to focus on something other than outer beauty. (Obviously, that is all I am focused on), and not the serious impending health hazard the matted dreaded mess of her head will create when wildlife begin nesting in it. And by the by, if it were really up to me, I’d dread it Lisa Bonet style and be done with it. And my daughter…would be miserable.

She is different in so many ways, struggles so desperately to fit in, if having pretty hair is one superficial trivial way for her to feel good, then so be it. I am not interested in taking strong feminist social stands at this juncture. I just don’t want her to look like a homeless person.

It is a basic matter of hygiene. And to be honest, when I see her get off of the bus, her jacket disheveled, misbuttoned and hanging from her shoulders, smears of peanut butter and jelly on her face, and her hair in a crazed, tangled heap, it saddens me. It is an outward projection of the disorder that is happening inside. And let’s face it. Everyone is judging her by it. And judging me.

So what to do? We have tried all manner of detangling spray. She screams because it is making her hair wet, even when her hair is already wet. I tried kids’ organic raspberry detangling spray and she decided the cartoon picture on the bottle made her gag. Blue spray bottles are for boys. We have tried soft brushes, hard brushes, round brushes, vent brushes, and a large glittery brush with pink bristles, Elvis-like Rhinestones, and her initial on it. (This one works the best…obviously). But she stills screams like a wild banshee. Most recently, screeching the word “joust” whenever I come near her with the brush.

For what it is worth, here is the only method I have found that works provided all the right “conditions” are in place. My daughter has also decided she hates taking baths and showers because her hands and feet get “pruny.” No talk of mermaids, bubble baths, or swimming like fishies has been able to detract from this particular obsession. If you do not have this odd and annoying obsessive-compulsive issue, than you may have an easier go. If I can distract her with toys, bath crayons, or princess body wash then we are good to go for step one.

Choose the Right Pillowcase.   I remembered hearing that satin pillowcases were better for your hair, but never bothered thinking they were an expensive luxury. While it won’t rid your child of SPD, it does help relieve snarls and keep fragile hair from dehydrating. I found a satin pillow case for only $9.99 from SuperflyKids.com and it was pink with Bubblegum trim—perfect. But it comes in an entire rainbow of colors.

We HAVE to take a bath or shower in the morning. Sleeping on a wet head will always result in tangles and they are much harder to get out once she has spent the night twisting and turning against the pillow case.

Skip Shampoo if needed. Sometimes my daughter can all tolerate a minimal amount of touch and the conditioner is more important. Traditional shampoos can dry the hair out and make tangles worse, so I like to use only sulfate-free shampoos. There are many drugstore brands, but since I have curly hair myself I love a called DevaCurl. The make a “no poo” and a “low poo,” shampoo that hydrates the hair.

Use Tons of Deep Conditioner. There’s nothing that cures tangles better than a good deep conditioner. Again, anything that is sulfate free is better for curls and so it also helps tangles. Deva-curl “One Condition” is great for everyday and the deep conditioner “Heaven in Hair,” are both great. They contain zero sulfates, parabens, or silicones and smell great. If the smell doesn’t calm her, it at least calms me. They also carry a leave in and a “No-Comb” de-tangling spray. I admit, the no-comb promise pulled me in, even though I know better, but it does work pretty darn well. Truthfully, if I only have to use the detangler for the most monstrous of knots. The conditoner works that well.  It is a little on the pricey side, but well worth it. You can find them at www.mydevacurl.com

Choose the Right Brush. My daughter is rigid that it was difficult to get her to try anything other than her glittery Elvis brush, so it took convincing for me to drag another plastic pronged weapon through her head. She relented when I told her this was a special “Double Detangler,” also by Ouidad. There is a great guide to hairbrushes and a review of this brush in “The Hairbrush Manifesto,” by Zoe Foster.

Try a Blow Dryer. We blow dry her hair in front of her favorite cartoon instead of a big mirror. This may not work for those children who are sensitive to noise, but my daughter responds to the white noise it makes. It calms her and distracts her from the brushing. More importantly, it mutes her screaming so that my nerves are not set on edge.

Lastly,

If I don’t see it, it must not be there. If all else fails, I leave those matted tangles near the delicate neckline alone. I know they’re there but no one else does, so it makes me feel better. Sometimes I wait for the hairdresser to take care of those. She does far better at the hairdresser than at home. Yes, of course she does.

Wine never hurts. (For me, obviously.)   A glass of pinot noir makes the whole process go a lot easier. Or if need be just singing “Red, red wine” as loud as I can. So I can drown her out when she starts screaming, “Joust, you’re hurting me.”

Cover up. I follow my son’s lead and find something to mask anything that looks hideous with one of those tacky flowers from Claire’s Boutique.

Beauteous. Maybe not. But we have not found any animals nesting in her head, and I haven’t had to cut it. In the meantime, I am holding onto the solace that she eventually grew tired of shoving pink and purple crayons up her nose, so there is hope this battle will soon pass. Or I will bide my time for the teenage years when she rebels and shaves it into a Mohawk.

 


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Yes, our Daughter Locked out the Principal

 “I say, Job well done,” my girlfriend texted me. It was just what I needed to cope with what had just happened.  Our eight year old was not only sent to detention, but gleefully locked the principal out of her own office.

After I got over the initial shock and distress, I realized that this was exactly what I felt like doing to the principal. Locking her out of her job, more accurately. I think my first grader may just be smarter than every talking head in the district. After three years of denying her appropriate services, maybe the solution was pretty simple. My daughter showed the principal the door.

My daughters’ emotional and aggressive outbursts had reached an alarming peak at this point, occurring multiple times a day. I heard, secondhand, that one day several teachers had to barricade her in the hallway inside of a wall of chairs and desks.   It is interesting that I never received a call about that incident. I probably should have marched down to the school upon hearing and demanded answers, but how could I when my daughter was hurting people? I knew it had to stop. I was devastated. Yet, I had been begging them to provide different supports, I had been suggesting that she belonged in autism support somewhere else, as painful as that was for me to even have to acknowledge to myself. Now, after all that, they wanted to know why she was becoming aggressive. “Was something different at home?” Huh?

It was like talking to a wall. It was like I had been screaming and shouting and no one was listening.

And I’m sure that is exactly how my daughter felt.

Her last outburst was over an art substitute. She was terrified at the prospect of entering the art room with a new teacher. She freaked. She scratched and clawed at the assistant. We had already been told that they finally agreed with me that she needed a new environment. She needed to leave. She needed to be taken to another school. Now that it was April. First they were going to give her a last chance to redeem herself. They were revamping her behavior chart with stickers instead of smiley faces. Or smiley faces instead of stickers. I’m not sure I was paying attention.

Maybe I should have been relieved, but I couldn’t’ believe that they were going to kick her out of school in April. I was devastated. I was crying myself to sleep. I was actually praying to God to help her so that she didn’t have to leave the only school she had ever known. And the only little “friends” she had ever had, despite the fact that she was alienating them every day. I wasn’t rational. I hated the way they were handling her at school. I didn’t feel that any of the supports were working, or that there were enough of them. Still, I felt by them taking her out of her school, she was being punished. It felt like a betrayal and an abuse of power, that after all my suggestions, they were now calling the shots. I hated them for doing this to her, for doing this to our family. Every time I thought of one of the little girls in her class, carrying on with birthday parties, and the end of the year field trip, and the class party, and the exclusive little brownie troop, a new fresh pain lacerated my heart.

They were giving her a week to shape up or ship out.

We had to sign the contract agreeing to the new three strikes and she’s out policy. Nothing else would change in her accommodations other than the twenty-something behavioralist and her twenty something special education teacher collaborating over inane sticker charts.

School Spirit day was approaching and it was suggested that I “consider” keeping her home for the day, as it might be overwhelming for her. The principal called me at home and explained that she, the guidance counselor, and the special education would all be in dress rehearsal for the “big show,” and since her “support staff,” (a stay at home mom with no education or special needs background) was only part time, our daughter would be left to process the noise and unstructured crowd on her own. “I’ll leave it up to you,” the principal told me.

I felt like I was being backed into a corner. It was like the school mafia was threatening me, using their bake sales and school spirit days as cover. My daughter and I headed to the mall for the day instead. Of course, it wasn’t a good day. I was sad, and stressed, and straddled between sympathy and resentment me for my daughter. “Why can’t you just be normal? Why can’t you just stop?” I kept begging her in my mind.

Of course, because she can’t process time and steps normally, and she has immense anxiety and ocd like behaviors, she sometimes moves through activities like a machine, not actually stopping to enjoy or experience them, but moving through them like a checklist to “get” to the next thing. It was not a day of leisure, shopping and chatting with my little girl. For those with no experience with autism like behaviors, it is similar to that stereotypical “Rain-man,” character, with her continually asking what is coming next. “Wait, did we have lunch?” she might say, if we had a snack on the go, instead of a full sit down. It is irrelevant whether she is hungry. It is the fact that we skipped a step. It will cause her major distress.

I told her we would shop and maybe get her a little something. When I detoured through the department store and stopped to look at a shirt for myself, she became belligerent and angry, rearing her head and shouting that she couldn’t wait, couldn’t wait, couldn’t wait to get to the Disney store.

I felt torn between wanting to protect her for all she was going through and angry at her behaviors. Maybe the school was justified, and I had just created a spoiled, monstrous brat that threw tantrums every time something didn’t go her way. My anger and frustration boiled up at her, feeling guilty that it was my own anger and lack of patience that caused her reactions. It was my fault. I am just a bad mother, I thought. I wondered whether it was my own cycling between anger and over-indulgence that was the problem, and now she was a monster. A monster who was being kicked out of the first grade.

It didn’t matter that her twin brother had not a single one of these issues. Nor did her older brother. Though he tended to be shy and sensitive, no doubt due to the added stress at home.

While she caused a spectacle in the store I took her arm with a firm grip and told her she was going to behave. And she turned and told me she was going to “Cut me head off.”

It was a gut punch. For all her tantrums, screaming, and aggressive behaviors, I always felt it happened mostly under duress. Most children with special needs develop “behaviors” and many try and control with them, which only makes sense when there is so much that they can’t control.

But this was horrifying. She seemed so matter of fact, I was terrified that she didn’t seem to flinch or react. I was afraid I had birthed a sociopath. I was in such shock, we just left the store and I gave up. She had me in tears, and I was holding her little shoulders demanding she apologize for saying something so awful. She broke down crying and kept apologizing over and over. I knew they were right. I knew we needed more help. I hated them for making me fight for it. I hated that they had me in the vulnerable position. I felt the world had been turned upside down. Hadn’t I been her advocate for all this time, and now they had me feeling like a detached, clueless parent. A bad parent. And maybe I was.

I sent her back the next day, after “School Spirit” was over, and just waited for the phone call. Of course it came early that she had been sent to the office. My husband, who fortunately works from home, was available and agreed to come. I sat in the passengers’ seat, slumped down to the floorboards crying. The principal came out to greet my husband and left our daughter alone in her office. Bad move. When they turned the corner, my daughter closed the door and locked it.

“We’re locked out,” the Principal said to my husband. “You see. This is what we go through. She has locked us out.” We sheepishly took her home. Actually, we took her for lunch. I watched her eat her grilled cheese, her eyes still wet, and her cheeks red and stained with streaks from where she had been crying. Now her body looked relaxed and calm and soft, sitting with us in the restaurant booth. All I wanted to do was hold her. “So you locked Mrs. X our of her office, huh?”

“She’s mean,” was all my daughter said. Indeed.

The next day I was called in for a private meeting. I knew we had lost the battle. She was out. Mind you, we had already been pushing for our daughter to be sent to another school for autistic supports, but without a clear diagnosis, she was categorized as a special education student and did not qualify. In fact, several of my distraught phone calls to the head of autistic support went outright ignored because our daughter wasn’t labeled correctly.

It didn’t matter that she had been having emotional outbursts on a regular basis. It didn’t matter that she was alienating herself from her peers. Nor did it really matter that she was below basic in every subject in school, and unable to complete much of her work, particularly math, because of her many emotional breakdowns. Most of these occurred over “spectrum-like” issues: changes in routine, transitioning from one room to another (which she had to do at least five times a day for special services), not including the changes for gym, lunch, and recess. She also broke down emotionally over anything that required fine motor activities (simply writing her name was difficult for her) and she showed clear signs of dyslexia which the school would not diagnose. She could not process games in gym because of her poor motor planning, and her poor coordination, balance, and gross motor skills kept her from fully participating even when she could grasp the games. This happened not just in gym and recess, but any activity that required her to manage both sides of her brain, in short, anything.

The principal informed me that she feared we had a much, much more serious situation here. “I’m seeing behaviors here,” she told me, from behind her large mahogany desk. “Not disability.”

Behaviors, not disability.

In the eight years of parenting never before had someone said something so hurtful. So ignorant.

When I had to tell my daughter that she would be changing schools, she cried painfully. She didn’t want to leave her friends. She didn’t want to leave her brothers. She said that everyone hated her and she wanted to be someone else. She said she wanted to be dead.

My seven year old wanted to be dead, and the principle thinks she doesn’t believe she has a disability.

She has been in autistic support for over a year now, and she also started taking a low level dose of anti-anxiety medication. She still has her triggers, but she is doing wonderfully better. They have not locked her in between desks. Instead she has a small classroom, and an area with bean bags, and pillows for when she is under duress. She has trained teachers who now how to safely, calm and hold her. Incidentally, her incidents are going away.

Sometimes she asks me what was wrong with her old school? What is wrong with her old principal?

I tell her that they just didn’t have the right supports for her.

“You know what, mom?” she says, “I think that they need to go back to school.”

Yes, I think that is a very good idea.