The Sleeping SPD Beast Awakens

27 04 2013

Image

I like this picture because he’s sleeping in a hat, he’s holding his book light, and just the fact that we took this picture with flash and he didn’t budge shows how hard he sleeps.

Just when things were looking up, we’re (almost) back to where we started. Sometimes it feels like just when Cameron is starting to “outgrow” his SPD symptoms (does that even happen or is it just wishful thinking???) he ends up right where we left off.

Let me start by saying that things in our house have been out-of-sorts lately. My husband, Jon, is in a part-time, yet intense, Masters program, Cameron is in swimming two or three nights weekly, Jon is working extra nights and weekends to make up for time missed for his Masters program, and I am going crazy trying to become an extreme couponer by taking advantage of double coupon days and clipping more than I ever have (no worries, though… I’m not hoarding cases of aluminum foil and toilet paper anywhere in my home), working full time more than 30 minutes from home, planning a trip abroad for my students, helping with an extracurricular club at school, exercising, flossing, reading to my children, trying to be a good friend, sleeping, cleaning, and the list goes on. I’m not complaining, I’m simply explaining what has been going on around here to cause the SPD behaviors to come back in full force.

One of the first resurfaced SPD behaviors is his speech. When Cameron talks to us, but naturally not to anyone else in the world, he struggles to get his thoughts all the way out. Seriously, Jon and I think we are crazy because no one else experiences Cameron’s laborious task of speaking like we do. It’s been something we’ve noticed for quite awhile, but it is getting worse. Every sentence he tries to say to us stops four or five words into it, takes a 5-10 second pause (it doesn’t sound like a lot, but try counting that out while you’re talking to someone), starts from the beginning, pauses again… Repeats process. I am so frustrated for him, and I asked him if everything is okay because he is having such a hard time talking, but he didn’t have any reasons for it (duh, Mom, my life is upside-down).

While he’s always bossy with his sister, Cameron has become so incessantly bossy that I literally cannot stand the sound of his voice because all that ever comes out of it is negativity. If he isn’t bossing her around, he’s complaining about anything and everything. And when his complaining doesn’t get him what he is so clearly entitled to (which it never has and never will, but still this seems to be a giant shock to him each and every time), he cries. And then he keeps crying.

While all of our house changes are clearly causing Cameron distress, they are doing the same to me. My coping skills and patience are nearly non-existent. Which leads to the straw the broke this camel’s back.

Accidents. The kind found in underwear. They’re back. To be completely honest, I do not check every pair of underwear that I throw in the laundry because I am scared that I’ll see what I don’t want to see. I know there are some accidents thrown in here or there, but they are minor enough to ignore. I have dealt with so, so, so many accidents, that I simply cannot deal anymore without getting emotional about them. Case in point, when I found a surprise while doing laundry recently, I was quite angry—not because of the accident, but because I found it when I went to pick up clothes to throw into the washer. Ick. Then later the same day, when a strong smell hit me in the bathroom where a certain bather’s clothes were, and I asked if there had been an accident, receiving the good old, “I don’t know… Did I?” as a response, I was even angrier. However, I did not share this with the bather, I simply explained that I also didn’t know if he’d had this potential accident, because the underwear in question were boxers, and I couldn’t tell if there was an accident or a self-care issue at hand. I calmly walked out of the bathroom, shut the door, and swore like a Marine raised in a trailer park of truck drivers.

Then I cried. This seems to be a theme in these blog posts. This time I cried because I feel like I did back on his very first day of life. See, breastfeeding was so excruciatingly painful for me that every time I held my beautiful baby boy, I was forced to recoil in pain literally almost as bad as the labor I’d gone through to bring him into this world. But every time other people held him, they were given the gift of being able to goggle at him with adoration and love that every baby should have, without thinking about what he was about to do to them. I started to resent this innocent being because he was torturing me. That’s when we switched up the feeding plan a little so I could love him without fearing him. The way I felt then is the way I’ve been feeling lately. Grandmas and grandpas are prevalent in our lives, and they get to see him for the incredible kid he really is; they get to have his snuggles, his humor, his passionate nature, and his love. I get to nag him. I feel like all I ever do is nag that kid, and I feel horrible.

This week, when Cameron brought home eight pages of math with corrections to be made and one page to be completed (he had been distracted in school, so his teacher sent home what he wasn’t doing there), my husband asked the question that I was thinking. “Do you think we should get him on meds?” Neither of us want this. We will try anything before we do this, but his behavior is starting to affect his schooling, his relationships, etc, and frankly, we don’t know if it’s all SPD or if there is ADHD mixed in with it, after all.

Well, instead of calling up the doctor to get a prescription, I ordered a new book I had recently read about, Cure Your Child With Food by Kelly Dorfman. I started reading it immediately, and opened to the chapter about SPD, only to find a checklist of behaviors typical of children with SPD, in addition to nutritional suggestions. It said that if your child has three or more of the behaviors on the list, he/she may have SPD. I read the list to Cameron, and we both laughed pretty hard at the fact that he had 11 out of 12 of the behaviors that I read to him. It is always reassuring to read about more kids like Cameron with puzzle pieces that don’t necessarily fit together so perfectly.

So, what are we going to do now? Well, the book says that kids like Cameron need supplements: Omega-3 Acids, Vitamin E, and Phosphatidylcholine. We do give Cameron Omega-3, but we ran out a while ago, and I just keep forgetting to buy more. This could be another reason why we’ve seen the spike in SPD behaviors. Other than that, we plan to start Occupational Therapy again, but we need to wait for summer to add anything more to our plates. I also made a flow chart of weeknight expectations so he won’t be surprised; it seems to be helping.

Tomorrow will be a trip to the store to buy the supplements that may help him. I’ll keep you posted on whether or not they work. Until then, I’m working really hard to fix my own attitude by reading up (more) on SPD with the book Raising a Sensory Smart Child by Lindsey Biel and Nancy Peske and by reminding myself of how to be a happier parent with one of my favorites, Raising Happiness by Christine Carter. How do I find time to read right now? The dishes don’t get done and the laundry doesn’t get folded. And I’m not sorry about it.

One more thing… It turns out that the bather mentioned earlier did, indeed, know he’d had an accident in his pants that time, and had lied about it. Lying seems to be the first response to any question asked these days. It also doesn’t seem to show up on any of the checklists for SPD. Hmmmmm. Suggestions on stopping this unwanted behavior are welcome!

Advertisements




To IEP or Not to IEP– Question Answered!

5 04 2013

It’s been quite awhile since I’ve written. For one, it is difficult to write during the school year. But second of all, I’m not sure how much I should write about my Cameron, who is no longer a little “noodle” of a child who doesn’t care what I write about him. Well, actually he truly doesn’t care what I write, but as he gets older, I feel like it’s more important for me to censor what I share as not to embarrass him. So, while I may have a bunch of stories in my head that he’s fine with me sharing, I’m not sure that I should. With that said, I do, indeed, have stuff to say… Shocking, I know. This one is a long one, but I think it will be helpful for anyone struggling with the decision of how to get your SPD kiddo help at school.

Cameron and I were keeping a dialogue journal with each other. A dialogue journal is a notebook where you take turns writing to each other.  He had written to me and asked me to read it right that moment, which is odd for him; usually he wants me to read it without him in the room. Seeing that it was grown-up TV time in our house because he was supposed to be in bed, I begrudgingly read about how he was taking the WKCE practice test (the statewide assessment) at school and was asked by his teacher to double-check his work, seeing that he’d finished so quickly. It was clear from what he wrote that his teacher wanted him to check, but Cameron wanted to read instead, so Mr. G politely asked Cameron into the hall to talk with him about it as not to embarrass him. To Cameron, this was a huge deal. He ended his journal entry with a giant “I HATE SCHOOL I HATE SCHOOL” scrawled across one page with pencil marks so dark I’m surprised his pencil didn’t break. I looked up at him and immediately he began to cry. Hard. This was the moment that became clear to me that Cameron needed some help at school. The fact that he’d been this upset about a practice test that he’s more than capable of taking in combination with his frustration with homework and his handwriting made me realize it was time. At 10:00 that night I left a message for the school psychologist at his school to start the evaluation process to determine whether or not Cameron qualified for special education, a decision I’d been struggling with for months before then, and one that his past teachers had alluded to.

Every day I teach students with IEP’s (Individualized Education Program—a legal document that speaks to what children with special needs need to be successful in school), but still I wasn’t sure whether or not he would qualify. His teacher thought the evaluation was a good idea, but I didn’t want Cameron to resent me someday for putting a label on him. All I knew was Cameron hated school, and he needed some help to meet his potential while he was there.

So one day, I just decided to ask Cameron what he thought. I asked him if he knew what special education was. He didn’t, so I explained it and told him that I was thinking about seeing if he was someone who could be included with special education to get some help at school. I told him I was afraid he’d resent me if we went through with it. “Why would I do that?” he asked. Then he said, “I think I want to try that special education thing.” With relief I went forward to write the referral, talk to his school psychologist, the speech pathologist, the teacher, and more. I mentioned all of the quirky things that we see at home, including his disorganization, his sensory-seeking tendencies, his frustration with homework, his handwriting that is “light years” behind his peers, the way he starts a sentences, gets about four or five words into it, and stops to recollect his thoughts, leaving everyone who’s listening to wait (im)patiently for 10 seconds or more, how he struggles to properly/effectively brush his teeth and wash his hair and body, how he cries whenever things change from what he expects, how he obsesses about Abraham Lincoln and repeats what he’s read verbatim, I even mentioned how I think he may be on the border of having Asperger’s Syndrome. It was like I was blogging to his IEP team; maybe I should’ve just given them this website. 

When it came time for the team to determine for which “disability” he would qualify, I knew they were thinking “Other Health Impairment” (OHI), which is what many students with ADHD or SPD have as their label. What I didn’t know until I received an email while working was they were also considering him for “Educational Autism.” Now it was my turn to cry. I mean, I’ve cried a lot when it comes to Cameron—I’ve cried out of frustration, pride, fear for his future, etc., but this time I cried because I thought I’d said too much, and I’d put an “autism” label on my son. Me. I did this. I gave him autism. (This may be a good time to point out that the team would be looking at whether or not he qualified for special education under that label, and did not, by any means, say he had autism—I may have been overreacting a bit- another shocker). I share a petri-dish-sized classroom with a coworker who has become a very close friend, and who also has a son with SPD tendencies. “Cry it out,” she said. So I did. And when I was back together a few minutes later, I called the psychologist, who explained that from what we talked about it sounded like this could be a possible label. (So, as I’d expected, it was my fault.) However, the benefit of teaching special education is that I know that there is criteria set by the state for whether or not a child qualifies, I had already looked up the criteria for Educational Autism, and I knew without being biased that it was a far stretch to say that Cameron qualified. The other benefit of teaching special education is that the psychologist believed me and took that label off the table. So just as quickly as I gave Cameron potential autism, I took it away. 

A few months later, it was IEP time. We gathered in a room of many, including the school psychologist, his teacher, a social worker, a social worker intern, a speech pathologist, an occupational therapist, a teacher of students with Learning Disabilities, the principal, my husband, and me. It was overwhelming to be on the opposite side of the table, and I didn’t know prior to that how long initial IEP meetings were. By the time the students come to me in middle school, it’s clear that they have hearing loss; I’ve never taken part in an initial meeting.

The meeting was LOOONNG. To sum it up in a long paragraph, everyone said wonderful things about Cameron and raved about how delightful, sweet, smart, funny, and observant he is. Some of my favorite highlights included when the social worker observed him taking a book out of his desk to lick it before putting it back (yes, he licked a book), not long after using pencils like drumsticks and saying, “Watch me Rock-N-Roll!” to his group. Another highlight was when the LD teacher helped him organize his desk one day, only to find 21 books that he’d hoarded away like a squirrel saving nuts for winter. I had known he lked to read while he was supposed to be focusing on the teacher, but 21 books?! Long story sort of short, he didn’t qualify for special education. What made the meeting even longer, though, was the discussion about how many accommodations his teacher was doing for him every day in the classroom. His teacher is wonderful, and we’re so grateful and blessed that he understands Cameron so well. He allows Cameron to use a computer when writing papers or spelling tests, he prints out the assignments that Cameron is supposed to write down each day so we can read them, he even went back into Cameron’s WKCE booklet to make sure he’d filled in the tiny circles completely so he would be accurately scored. He’s fantastic. Unfortunately, not all teachers differentiate as he does. I was worried that if he didn’t have something in writing, all of the hard work that he does would be lost in years to come by teachers who don’t feel they need to help him because there is nothing in writing.  So, for students like Cameron who have a diagnosis of ADHD, as well as SPD, there is the 504 Plan- which is a list of accommodations that are needed for a student to have equal access to learning in environments equal to their peers. After discussing the need and qualification for the 504 Plan (about 30 minutes worth), my dear husband spoke up to ask if we were “pushing it” and maybe almost enabling Cameron by providing him with accommodations different from others in the class. I appreciated where he was coming from, but at 90 minutes into the meeting, I (and seemingly the others on the team) agreed that while the accommodations are being implemented this year without a 504 Plan in place, it’s good to have it in writing for years to come.  My husband later informed me that he was having a hard time “reading the room,” and that he wasn’t sure if people were just agreeing to accommodate Cameron’s crazy parents who are demanding more from the school and less from their child or if they actually agreed that Cameron needed help.  What sold me on the 504 most of all was when his principal said he was the same way as Cameron and wished he would have had a team putting this together for him. 

So, Cameron has been fitted with an appropriate 504 Plan, which will be revisited annually to make sure it works for him.  He is much happier at school now, as I think it opened everyone’s eyes to who he is and how he learns. I like to think of him as a squirrely, book-hoarding, child who needs a bit of help to show what incredible potential he has.  He is great, and with help that hopefully lessens over time, he will someday be a happy, productive, responsible adult, which I think (hope) is what all parents want for their children.








Parham Eftekhari

Tech. Food. Art. Life.

just a dad with disney questions

reading into things way too much...

systemsforsensorykids.wordpress.com/

Solutions for Parents and Families of Sensory Kids

My Out-of-Sync Child

Raising my ADHD, PDD-NOS, Out-of-Sync Daughter

Jill Kuzma's SLP Social & Emotional Skill Sharing Site

Ideas for Educators Supporting Social/Emotional Language Skills

pumpkinblossoms

A happy place for my heart

Sensory Smart Parent Blog

Insights, support, tips, and news for parents of kids with sensory issues

The True Power of Parenting

Emotional Intelligence for a Bright and Successful Future

Motherhood Is An Art

Motherhood takes a lot of creativity and humor!

The Immature Man's Guide:

How to survive in a mature world.

The Runaway Mama

For all the moms with a bag packed just in case.

...said the blind man...

Just another WordPress.com site

Outlaw Mama

My rules. My transgressions. My stories.

The Sensory Spectrum

For SPD Kiddos and Their Parents

Sensory Speak

Just another WordPress.com site

I Made A Human, Now What?

the perils and products of parenting

Voices of Sensory Processing Disorder

Giving a Voice to the Sensory Processing Disorder Community

The Jenny Evolution

Join the Jenny Evolution. Because We Never Stop Evolving As Parents or As People

mommysaidaswearword

writer turned mommy, mommy turned wife.

staydaddy

Being a parent everyday

Sensory Smart News Blog

Where Sensory Smart Parents Go For The Scoop

Musings, Observations & Anecdotes

Listen up. Or sh*t is gonna get real.

notjustaboy

A Mom vs. Alphabet Soup (SPD, NLD, ADHD...)