Navigating Difficult IEP Meetings Successfully, Interview with author Jeff Cohen

While looking for an expert to speak with about IEP Meetings, I happened upon the book Guns A’Blazing: How Parents of Children on the Autism Spectrum and Schools Can Work Together – Without a Shot Being Fired, by Jeffrey Cohen. I immediately liked the title, because most families I talk with do attend meetings with their ‘guns’ (at least in their holster) – and few are able to actually leave them at home.

So I looked up the author, Jeffrey Cohen, to learn a little more about him, and here’s what his Amazon page said, “Jeffrey Cohen started life as poor street urchin, orphaned and taken in by a gang of pickpockets led by an older man named Fagin. No, wait. That's someone else, entirely.”

And I laughed out loud. Really hard. Which was just refreshing, because you know what, this parenting a special needs kid is HARD – and you all know my motto: If you can’t laugh at my life, you have no sense of humor.

Oh, Yes He Did

I haven’t blogged about Matthew’s antics in awhile and was worried that maybe I would forget all of the chaos he creates on a daily basis – so I am dedicating this post to his unique aptitudes. (Sounds better that “jackass behavior”).

Matthew spends most weeks on learning how to master a new skill. I think some of you are already thinking, “Oh, how nice.” But really, these aren’t the kind of skills you want your kid to learn; we are not talking about cleaning up toys, making beds or trying new foods. We are talking about Matthew’s little Engineer-In-The-Making brain that is wired to solve any mechanical dilemma. The primary focus these days is to first determine how things work – in order to apply those scientific principles to other more mundane tasks. Or at least that is what I like to think he is doing . . .

May/June found Matthew interested in the power and function of water. This little obsession has historically been focused on the hose, what you can spray, how far it goes, how much pressure is required, and of course, the need to turn it on and off repeatedly at will.

But, since every year spring brings new life, this year, spring brought new life to Matthew’s old water ideas.

He decided that he wanted to see if he could flood the kitchen with water.

Yes, you read that right, he wanted to flood the kitchen intentionally. Just to see what happened.

The Lesson of Proprioception

I often look back on my older posts to see what I was doing last year. I am especially looking for help this time of year when the It's-Almost-Summer-Crazy has a hold of my kids and can't seem to let them go -- they act like I put them in the washing machine on spin cycle. Not that they wouldn't love that, but . . .

How do you solve this? The answer for us is always more propriocpetion.

If the boys won't sleep, or can't sit still at the dinner table (or stand in one spot as the case may be), or are so squirrely in the mornings that we are late to school every day for the last week (was that just us?!), I have to go back to basics: Proprioception.

So, as I was thinking this, and reading old blog posts, I came across this one, and I wanted to share!  It was written the end of May last year, just a day before Gabe's 8th birthday -- so it seemed fitting that the photo here is of Gabe's 9th birthday -- just two weeks ago.

I hope it helps calm your last days of school (or first days of summer!). 

H

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Let them Deliver Pickles

My friend made an analogy using the "Dog Whisperer" today at lunch. It sparked my own reference to a "Cesar Milan" episode I saw the other day. He was putting a dog backpack on this Pit Mix (which I feel my kid sure can act like sometimes) and the only thing he had to fill it with was pickles.

Cesar says, and I am paraphrasing, "When you put the backpack on the dog it gives him a job. He is clearly more focused, because now he isn't just walking, he is delivering the pickles."

But we'll get to how that ties into my day in just a second.

It's Not Regression!

This is the time of year where parents all over the world are wondering, worrying and asking, “Why is my child regressing?” with a level of terror usually reserved for things like walking into your kitchen and finding your 4 year old has stuck the hose in the French doors and proceeded to turn it on, effectively flooding the kitchen with water – for the third time this week.

Oh, actually, that probably isn’t your life (the hose thing), just mine. . .

But the regression question is at the forefront of everyone’s minds these days. Isn’t it?

Teachers, parents, therapists, are all watching as our kids, who normally can perform a certain task, or have acceptable behavior in a given situation, are now magically unable to.

And it scares us. The idea that all of the therapy and consistency is somehow erased one spring day without so much as a warning – that it will all be for not, because our child has regressed.

I hate the word regression. It is so permanent. It is so damaging. It suggests that our kids have LOST skills that took them months, maybe years, to attain.  But so you know, I don’t think what we parents see this time of year is true regression.  Ah, then what is it?

Rock Jars

In an attempt to further answer the age old question, "Is it sensory or is it behavior" I have devised a new behavior modification 'game'.

(evil laughter)

The game is very simple. You start with a Jar of Rocks, in your own color (black is Gabriel, yellowish/brown is Matt and the reddish/brown is Nick). For each time you break an existing rule, which have been predetermined by our family, written down and posted, you lose a rock from your jar. If you have any rocks left at the end of the period (5 day school week, and reset for weekends when they are home more), you earn a privilege: things like 'choose breakfast', 'choose family movie', 'choose a game to play', 'pick the playground', etc. Then we reset, and return all of the rocks to their jar.

Do I think this basic of all basic "star chart" type reward systems will work? Yes and no.

I believe it will be helpful for Matt, successful for Nick and a toss up for Gabriel.

I thought about doing many other options including the Wheel of Dreaded Consequences, which was quickly ruled out, star charts, point systems (which worked wonders for Nick'sreading success over the summer), and more, but thought the newness of this would be an added bonus--for the kids and for me.

Rocks were also a good choice for these reasons:

1. Sensory Friendly: Visual, tactile, heavy
2. It is easy to see how you are doing; no counting necessary
3. Reusable and Inexpensive (a one time cost of $4.50/jar to buy new at Michael's)

Now the obvious truth here is that no matter how well I use this system, it isn't going to answer the question "is it behavior or is it sensory" entirely.

But it is going to give me some clues as to what Gabriel has the ability to control (will he stop calling me a "dumbass" daily?) and what he can't.

The reality is that Gabe is easily motivated. I feel like I take advantage of that sometimes by giving too many 'threats': Stop or I'll...whatever. Not my favorite way of parenting and parenting a kid like mine is hard. I want to feel good at the end of the day that I did my best, and I am not feeling that way lately. I hope this Rock System eliminates the need for threats and constant reprimand. I can just say, "You lost a rock for that."

When we purchased our rocks and jars yesterday, as a group (all three kiddos and me) they enjoyed choosing which rocks were theirs and looking at all of the jars (never mind the panic attack I suffered having all three of them in an aisle dedicated to glass jars).

The challenge was that the rocks were sold by weight; not number of stones.

When we got home, and set up our little area on the counter, I started counting rocks into jars.

Nick has 10 rocks (one wouldn't fit)
Matt has 13 rocks
Gabe has 14 rocks

Nick didn't find this to be fair.

"Nick, how many times a day do you flip out?" I asked him.

"Ah, virtually none." He said with a smirk.

"What about Gabriel? How many times a day does he flip out?" I said.

"A LOT." He said.

"OK, then we see that Gabriel is going to need more chances than you are." I concluded.

"Yeah, I think so." Nick said.

And that was it -- the gods have spoken on how many chances each child gets. It is fair -- which is NOT to be confused with equal.

Example of Gabriel's Reasons to Lose a Rock:

1. Calling names
2. Hitting, biting, kicking
3. Throwing things
4. Breaking things

Example of Nick's Reasons to Lose a Rock:

1. Not following directions (ie "get your shoes on" or "clear your plate")
2. Ignoring me when I speak (this drives me crazy)

Example of Matt's Reasons to Lose a Rock:

1. Spitting
2. Throwing things
3. Spilling things intentionally (books, toys, drinks, popcorn, etc.)

The boys all have something to work on. Come to think of it, maybe I should get myself a jar too...*sigh*

I am hoping that this will be motivating for all of them and give me the motivation to be more consistent. I have successfully motivated Nick this way for years (the previous mentioned reading chart--more points for higher level books earned him a backpack of his choice this summer, as well as a "stay in bed" chart that earned him $40 over 6 weeks, all have worked wonders) but Gabe's behavior isn't as easily modified. And Matt...well...let's just say it is time to take a more 'formal' approach to his behavior modification.

I will keep you posted, but until then, I am truly happy with the aesthetic value of the Rock Jars on my counter. Is that weird?

H

FTF "A Jaw Dropping Experience" by Marla Roth-Fisch

Towards the end of summer in sunny Colorado, my entire family wanted to get one last outdoor swim in. My husband and I swam and played with the kids in the large pool, enjoying a game of keep away.

As my son jumped wildly with excitement to catch the water filled sponge ball, which almost careened our heads from the other team, (my husband and daughter), he accidentally elbowed me with a left jab to the right side of my face.

As I heard the crack in my jaw, I didn’t think much of it at the time, except that it hurt…a lot! I wanted to shrug it off as my son’s apologizes overflowed.

I hesitated to show the pain and tears for fear it would upset him even more, my son has Sensory Processing Disorder, and does really well, but at times his feelings of empathy and concern are over whelming for him.

“It’s an accident, I’ll be fine” I repeated several times, attempting to stretch my jaw from side to side.

Letting the aches and challenges of eating go on and on for months, as each day I thought it would get better, I finally surrendered to the fact that I need to get some help; perhaps there’s something really wrong?

The kids and I went for our routine dental check up and cleaning. After explaining why I couldn’t hold my mouth open as wide as they would have liked, my dentist recommended that I visit with my orthodontist first about the jaw, then perhaps see a specialist.

I scheduled an appointment with the orthodontist, and had extensive x-rays taken; a cool kind of X-ray that circles your entire head giving a panoramic view of your jaw.

From what they saw, there was no “visible” crack in my jaw. Big time relief! Prior to leaving he adjusted my retainer so that the muscles of the jaw would relax, and fall into place. Ah…pretty easy fix, I thought, just have to wear a big bulky upper retainer 24/7 for the next couple of weeks.

As the weeks passed, I felt better but still as I opened my mouth it veered to the right, the bite was off and caused me to frequently bite my lip…not a pretty sight.

I will preface this by saying that I am a firm believer in both acupuncture and chiropractic work when done by a trusting and experienced professional: Next I was off to the chiropractor.

After an in depth consultation and some minor tweaking of my body, the chiropractor said that I have a dislocated jaw, and we need to work on it for some time…Yikes, what is ‘some time’? Did I have the time, could I make the time? Who has time?

Throwing in the towel about now sounded good; I’ll live with the pain.

Knowing that this treatment can make me better, I opted to continue. Thank goodness for insurance and the little positive voice in my head!

So, I scheduled several appointments at a local holistic healing center for adjusting the jaw back into its proper spot.

The treatment at times was definitely painful, however, using relaxing techniques, heat, cold, massage, the adjustments and Advil, I got through.

While in the waiting area of Whole Health Center, I noticed that there was a brochure on the treatment called Facial Rejuvenation. Hmmm…After all these months of pain, I could really use a “lift” in my face, and tackling the fine lines and wrinkles could be a bonus!

I started seeing my acupuncturist for the muscles surrounding the jaw. The chi (energy) and blood had stagnated contributing to the discomfort, getting needles stuck in my face was a welcome relief, if you can believe that!

Feeling much better, yawning with ease, more relaxed around my family, and realizing that if you don’t take care of yourself, there is no way you can be the best mom and wife to your family.
If you are on top of your game, everyone is a winner!

Marla Roth-Fisch, award winning author and illustrator of Sensitive Sam

Tips For Newly Diagnosed Families With SPD

This is my Checklist for Families Newly Diagnosed with SPD (or still flailing about!). It is the basis of my therapy for Gabriel and what I rely on day to day to live. It makes me feel like I am empowered to manage his Sensory Processing Disorder instead of feeling like I am at its mercy all the time.

1. Find a qualified, trained, experienced Occupational Therapist.

You may think you already have this step down, especially since your child was probably diagnosed by an OT. But, and this is a HUGE but, you truly need to find an Occupational Therapist that has not only been trained in Sensory techniques, but one that is currently treating patients with SPD successfully.

There are many things that OTs continue to learn, and having an OT that is focused on sensory integration is key to your child’s ability to get the most out of OT now and in the future.

Did that scare you? That you might go back to OT? A great OT is there for you and your child as your child grows up (shocking to think your preschooler or Kindergartner will ever “grow up” but as it turns out, they will). You may find you go back to OT for many reasons; maybe you need a little help with something specific—like handwriting or social issues. A great OT that knows your child and family will be priceless for the rest of your child’s SPD journey.

We have been back and forth to the same amazing Occupational Therapist for over 4 years now. She has been my son’s OT, my personal therapist, my son’s social coach, his school advocate and now I consider her a personal friend.

2. Establish a Routine immediately if not sooner.

Routine is going to be your new BFF. I say all the time that routine is my dearest friend and is the one I miss the most when I don’t see her for too long. Making things predictable at home for you and your kid will reduce meltdowns. Plain and simple: Less Meltdowns = More Calm. More Calm = Happier people. That’s the way it works, I don’t make the rules, I just follow them.

Routine means you need do the same thing, every day, at the same time. Don’t freak out. You can do this. It sounds like you are sacrificing a lot, and you are sacrificing the by-the-seat-of-your-pants style of living and parenting you may be used to. But it is time to be more organized – no running to the grocery store after you pick your kiddo up from school. No staying out late at a friend’s house when you KNOW your kid can’t handle it. This is about creating a schedule within the limits of your family. Those limits will get wider as your child gets older, but until then, let’s take your child’s world from being THIS BIG and bring it down to a more manageable this big.

Now, whatever you choose to do for your base routine each day (you need before school, after school and bedtime routines at a minimum in my experience) support your routine with visuals for your kiddo. This is especially important for young kids that cannot read, but valuable for all kids. Post routine schedules for everyone to see – including your spouse! My hubby wasn’t exactly thrilled with my new routine and schedule based living, but when he realized that I felt calmer (knowing there would be less meltdowns reduces my anxiety) and our kiddos felt calmer, he got aboard the Train. Chugga Chugga Woo Woo!

3. Establish your Sensory Diet immediately if not sooner.

Your Occupational Therapist will be your best resource for this to begin with. He/she knows your child’s sensory needs the best and can give you the right tools to use at the right time (we aren’t talking wrenches here, but info, ideas and activities).

This sounds daunting, I realize that. But, when your routine is in place, you will notice patterns of behavior: Every time my kid comes home from school he is overwhelmed and needs quiet chill out time, so I give him alone play time or TV with a heavy blanket (the proprioception helps my kid from getting *too* low); however, when he was in Kindergarten he came home WIRED and high high high, so we put him in a weighted compression vest for 20 minutes every hour until bed. Did wonders. Each kid is different—but they all have patterns.

Once you identify the patterns (journaling their behavior is an easy way to figure it out), share this with your OT and ask for ways to control your child's "engine". Once you establish the basics, you will be able to mix up what to do with your child and his/her "Sensory Diet" vocabulary will expand. You will also learn to be creative; a true Master of the Sensory Diet.

For ideas on what you can do at home that your kiddo will truly LOVE read this post and for ideas on toys to have at home to aide you in helping your child get some input, check out this one.

4. Eliminate Food Dyes and HFCS.

This is just a fact for most kids I know: Fake dye, High Fructose Corn Syrup and all those chemical additives in food are just plain awful. I limit sugar intake as well, but I would rather see Gabriel eat a dozen homemade cookies then even one Oreo. And don't get me started on the birthday cakes from the grocery store! Who needs a two inch tower of red icing? Gross.

All kidding aside, we really are pumping our kids full of all of these chemicals, and in my opinion, our kids who are already "sensitive" can't handle it. Why stimulate their brain more? Check labels for hidden HFCS. I was shocked to find out that Graham crackers and Yogurt have HFCS. Ridiculous.

Yes, on some level this means I have to be the Food Nazi, but you know what, I am willing to do it. At this point in Gabriel's life, it doesn't surprise him when I walk over to him during a birthday party to scrape the frosting off his piece of cake, or insist that he only have a middle piece with no decoration. That is a treat--store bought cake. Did you know they put HFCS in that stuff?

I really believe that making the effort to eat healthier--more whole foods and lots of protein -- makes a noticable difference in my kid. And, who knows, you might just lose some weight while your at it. : )

5. Find a Support Group.

Finding other parents that get what you are going through is necessary; note I didn’t say “optional” or “a good idea”.

This is crucial to your emotional health as a parent. Being the parent of a special needs child (Yes, SPD counts as “special needs”) means you are going to have a few extra bumps in the road. Establishing a support group early on is essential. And it isn’t just for you to vent, cry or otherwise find emotional support (although you will do those), it is also so that you have resources for tips on everything from school to travel to eating. The members of your group will become your best asset!

Here are some great places to start:

www.sensoryplanet.com – This is an amazing asset for all people, parents and caregivers of sensational children. A true social network of people dedicated to Sensory Processing Disorder. A must for any parent with an SPD kiddo. Don’t forget to make “friends” with the founder Carrie Fannin while you’re there!

www.spdfoundation.net – They have a great national program of Parent Connection hosts that provide in person support in major cities (and some minor ones too!) all over the US. Nothing beats in person support. Nothing.

http://health.groups.yahoo.com/group/sid_dsi/ This is an international group where you will find people from all over the globe.

http://health.groups.yahoo.com/group/SensoryStreet/ This group, originally based out of the Bay Area in CA, has hundreds of families supporting each other. A great find!

6. Take care of yourself/Find Respite.

This is an over-used cliche: Take time for yourself. One would think that finding respite should be intuitive--right? We all get that we need some time alone, time away and time to be an adult with other adults. But, as the parent of a special needs kid, there seems to be an endless number of things we have to do for someone else, namely our kid(s), and we leave ourselves last.

I encourage you to find friends, neighbors, family or a plain old babysitter (try the special needs section of http://www.care.com/, we have had luck there) that can watch your kid(s) and let them do it. If you don't have the extra money for a babysitter, ask others for help. If that is hard for you, read this post I wrote on the challenge of asking for help and why we have to anyway!

Having time to recharge is something that many women think is a luxury--not a right. You cannot take care of someone else until you take care of yourself. As I tell my children, this is NOT a point of opinion but rather a point of fact. No need to argue facts, just accept them (they argue anyway).

Once you accept that you do need respite and you deserve respite you are nearly there! To start with, respite can be just allowing yourself a shower, preferably alone, every day. Or maybe it means you spend the extra hour after the kids are asleep doing your nails instead of doing the laundry.

Finding time for yourself really does make you a "whole" person. You deserve that, and so does your sensational kid.

7. Strengthen Your Marriage.

If you would’ve asked me if my marriage was strong four years ago, I would’ve said yes. Why? Because I really thought that since my husband and I both were “aware” of how hard our life was and since I was sure that both of us understood that there was limited time (having three sons in 40 months is no easy task!) that it meant we were OK. Truth was, it didn't.

No matter how much you understand intellectually about the difficulties of raising a special needs kid, you can't rationalize away the problems that come with it emotionally--for both of you.

The rate of divorce for parents with a child with Autism is like 83% and I can't imagine SPD parents are too far behind that stat. Our children need us--and arguably need stable parents more so than the average child.

Take the time for your marriage. This means talk to your husband, go to counseling BEFORE there are major issues, have dates, talk to each other about each other (and not just the kids for pete's sake!) and spend time being a couple.

Please don't tell me you don't have time for those things or that you don't need them. Strengthening your marriage is NEVER a bad thing--it isn't like people say "Damn, my marriage so so strong I totally wasted my time and energy working on it!" Am I right or am I right?

When you have those things in place life will seem much easier. Not simple, not spur-of-the-moment-wine-tastings-with-friends-fun, but manageable. : )

If you have anything to add, by all means please post your tips in the comments below.

Enjoy the pic--the sand says "Mazatlan 2010" and the boys are yelling "Mexico!" In retrospect, they probably shouldn't be saying a word that ended in "O".

H

Vacation Rewind

I don't have an extensive amount of time to type, but I thought some of you might like to see the visual schedule I put together for our trip. It is pretty basic, but it will get us there.

I will give each child a printed off (disposable) version, with their name on it, and a marker to help them "check off" each step as we go. They can carry it with them and refer to it at will. I like doing it this way instead of the Velcro laminated version because during a flight/trip it is hard to not lose things--and when you do lose something, there are too many places to look for it. : )

Gabriel can't believe there are 24 steps to get there--me neither. *sigh*

In case you are looking for things to read while I am gone (I don't want you to go through withdrawals!), you can check out the blog series I did on our trip to San Diego last year.

Here it is:

The plane ride to San Diego (starring Matthew out-of-sync, Gabriel impatient, and me NOT killing a flight attendant).

Our zoo goes to the zoo (our group heading to the SD zoo).

Sea World (all of us petting sharks).

A day to take it easy (the San Diego Children's museum and more).

The final leg of the journey (Legoland).

The Beach (the last day at the beach, the trip home, and thoughts on my apt to get Gabe's official "ASD" diagnosis last year).

So, until I am back with more crazy sensory-induced antics to share, keep yourselves warm and I will be drinking a toast to you by 10am Friday!

Adios Amigos,

H

A Day In My Life

Monday, October 26th, 2009

6:00 AM Wake up, roll over go back to sleep.

6:55 Hear TV show playing downstairs; Nick’s up.

7:07 Gabe arrives in my room; send him back to bed; it’s a little too early for him to already be awake and that means that he will be over-tired before bed, which is just a nice way of saying he will meltdown more than normal this evening if he doesn’t get more sleep.

7:15 Gabe is back in my room, this time getting himself dressed because Grandma gave him a new “Lions” shirt from her vacation; I allow him to go downstairs and mentally begin preparing for an afternoon full of meltdowns.

7:23 Matt is in my bed. I love waking to that small child. We cuddle, and talk about our dreams. He is sweet and happy. He is still my baby.

7:44 Get up; go to the bathroom to find the toilet is clogged. I decide that I am too tired to unclog it now (because apparently I must think I will have more energy later?), I can hold the pee for now, I let the dogs outside; tell Nick to turn off the TV and get on routine (starting with getting dressed); ask Gabe to get on routine too.

8:00 Monitor Gabe’s progress on routine, pack lunch, check backpack, pack teacher’s snack donation for the Teacher Appreciation Snack Bar in honor of conference week (otherwise known as the hellishly-long-early-release week) and the part of Gabe's book report that is a pumpkin made to look like Curious George; load everything into Gabe’s backpack for heavy work before we get on the bus.

8:12 Nick comes downstairs in shorts and a T-shirt; send him back upstairs for weather-appropriate clothing (preferably that matches, but not pushing my luck) and socks (which he hates, but wears).

8:22 Gabe needs to wait while I get Nick ready; go upstairs (for the upteenth time), Nick is still in shorts. Dress him myself while telling him how frustrating it is that I have to dress him like he is 3 (this doesn’t go as anticipated, and since I was hoping for a little “proof” of him being older, I am annoyed when he just lets me dress him).

8:25 I go downstairs, problem-solve the breakfast fight; Gabe eats the last bar that Nick wanted to pack for his lunch; I dig through the van for a plastic bag of snacks that I know has another bar in it. Victory! Disaster avoided.

8:30 I pound the stairs again to get Gabe’s medicine.

8:35 I get their coats on; they run to the bus and make it on time (in the pouring rain).

8:40 Matt watches the Mickey Mouse Clubhouse "Choo Choo Express" movie for the first time today; I check email.

8:48 I email all of the photos from last week's Sensory Showtime to Carrie Fannin.

9:00 I realize that I didn’t send the written portion of Gabe’s book report to school with him. I call his teacher.

9:05 I am overwhelmed, so I deiced to repost my Sensory Friendly Halloween Guide instead of writing something new; I tweet my new posting and then eat breakfast (7 “fun size” Kit Kat bars and a Diet Pepsi).

9:10 I realize that I forgot to tell Gabe’s teacher that I cannot volunteer anymore (Matt is not in school because we are waiting for the Early Intervention assessment) and that Gabriel will ride the bus home on Tuesday; I email her.

9:13 And then I email Nick’s teacher the same thing.

9:15 I go over the new book layout for my Children's Book, This is Gabriel Making Sense of School, and then email the Illustrator my critique and a reminder of how excited I am to see the 5th illustration this week!

9:41 I respond to a friend’s email request to start our Halloween celebration EARLY. Sorry, but that’s a no.

9:50 Attempt to arrange a play date for Nick on Wednesday so that he doesn’t drive Gabe crazy all week.

10:00 Call my hubby who is out of state on business; he is too busy to talk but will call back.

10:01 Matt’s movie is over, time for PB Sandwich and some fort building; a new found fave (the fort, not the PB sandwich).

11:01 Hubby forwards me a grant application from Real Foundation, I forward it to FEAT of WA

11:15 Watch Handy Manny and play Halloween colored playdoh with Matt.

12:00 Clean up the kitchen; empty recycling, pick up toys, get a snack for Matthew, sweep the floors.

12:32 Decide I am getting a shower; bolt all outside doors, lock office, put another show on for Matt, rush upstairs.

12:33 In shower. Ahhhhhh, warm water my friend, how I've missed you.

12:38 Phone rings; out of the shower.

12:40 Talk with Children’s Autism Center; reschedule Gabe’s apt with Psychiatrist to January; insurance issue.

12:48 Second call coming in, they tried twice, I have to answer in case it is the school, thankfully it is not, it's my mom.

12:55 Call mom back, in my underwear still, realize the boys are going to be off the bus in 5 minutes; tell her I need to call her back.

1:05 Dress quickly; rush to greet boys at bus stop.

1:10 Boys in the house, on afternoon routine (backpacks up, hands washed, shoes away, snack).

1:12 Gabriel is upset it is a half day; can’t choose something to do, says he isn’t hungry.

1:15 Jeff calls me back, finally, ask him if I can call him later. : (

1:25 Still asking Gabriel to find something to do; dogs are running laps through the house after being outside in the rain.

1:27 Give Gabriel to the count of 10 to chose one of my three ideas; Matt helps me count much to Gabe’s displeasure.

1:27:30 Matt grabs M&Ms and begins to have a meltdown that he can’t eat them. And Gabriel is lying on the ground crying that he has to choose something to do. I let him push himself around on his back with his feet to help regulate, and then I help him up; he is yelling, throwing things and my all time fave; grunting.

1:30 Gabriel decides on coloring, but is upset there are no markers; Nick and Matt are watching Jungle Junction.

1:31 Begin dishes, load, get snack for Nick, and keep verbal reminders with Gabriel.

1:40 Gabe finishes coloring, not completing our “30 minute” activity requirement; I get him a snack and set the timer over for 30 minutes. He must stay on a single task for 30 minutes (helps with transition home if I can get him to do it).

1:45 Done with his snack/TV watching choice, after only 5 minutes and decides to go upstairs to play flashlight games, prompting the other two to need new batteries in their flashlights.

1:50 Find batteries and realize that the problem lies in the fact that two of the three NEW flashlights, less than 24 hours old, have lost the spring required to make them work. Great.

1:55 Gabriel is finally calming down, finding an activity, plays flashlights/cars/planes and other make believe things with Nick. Crossing my fingers.

2:16 Receive email from FEAT of WA saying it is a “go” on submitting an application for the Real Network’s grant offering; I am helping to edit in order to make the deadline; Nov. 1st.

2:20 Gabriel asks that I print off Halloween Coloring pages, but the printer is out of ink; I hand draw a Haunted House for him to color. Then get lunch for myself based on the fact that I haven’t eaten anything that I would personally consider food up until now; water and tuna w/crackers, and more PB for Nick and Matt.

2:45 Gabe is done with the picture and he decides it should be for his teachers; he writes their names and his on the back of the paper; only flipping out and falling to the ground once over the final letter. We pack his Book Report and Curious George book in is backpack for tomorrow.

2:50 Gabriel sits on my lap. He smells like he didn’t wipe. I force a “clean butt check” and a re-wipe. He is angry and it forces a meltdown. But his butt is clean now. He heads upstairs with the “I don’t want this shirt” and “I don’t care” about everything I say. Door slamming ensues.

3:00 Nick finds the new chapter books on the counter; he reads quietly to himself from the thickest one. Gabe and I do some pushing, pulling to get his body up a little.

3:28 Ding Dong! A package arrives via UPS; Matt’s birthday supplies; Gabe carries the box for heavy work. Dogs come inside after getting wet again; more laps.

3:34 Matt comes downstairs naked from the waist down, with a new tube of toothpaste in his hand, mumbling about brushing his teeth—fine, but he needs to wipe his butt too. Making me 2 for 3 on the day for wiping my boys’ butts.

3:37 While cleaning the strawberry toothpaste from the counter and dressing Matt, he says, “Ewww. I stepped in pee and slipped,” after he falls to the floor. “I think that was toothpaste.” “No, it was pee.” He says. “I don’t see any pee.” “There it is.” He says pointing on top of the step stool, which is obviously covered in pee. “Who did that?” “It was me, Matthew.” He says proudly tapping both hands to his chest. “No, Matt! You can’t pee on the stool, where are you supposed to pee?” I say. “In the backyard or in the toilet,” he says. “ONLY in the toilet,” I remind: Probably a waste of breath.

3:41 Downstairs where Nick and Gabe are climbing behind the couch (squishing and crawling all good sensory activity) and shooting each other with what Matthew refers to as a “Buer”, cause that’s the sound it makes “Bue, Bue, Bue”. :) It quickly goes bad.

3:45 Agree on watching a movie, The Little Vampire (old kid’s movie, PG), in my room w/popcorn. MUST USE HEAVY BLANKET.

3:57 Matt watches Choo Choo Express for the second time with popcorn, after a good toe nail clip (we do this daily; it is a sensory thing for him)

4:00 Research Children’s Book Awards that my new book, This is Gabriel Making Sense of School will qualify for, and determine if I can nominate myself! (Tentative release date of 2/1/10)

4:50 Gabriel bursts in my office to share, in unintelligible monologue, the movie up to this point, ending in “And they opened the barn and the cows fly!” Matthew and I leave the office and head to the family room to cuddle on the couch giving lots of kisses and a great deal of input.

5:22 Movie is done, meaning calm time is over. Gotta get dinner now. Nick goes upstairs to find something to do while Gabe flips out because he can’t think of anything to do. Another transition induced meltdown.

5:25 Send him to his room to regroup.

5:25 Follow him upstairs so I can stop him from eating paper and destroying his room. Recognize that he is low; have him come downstairs for heavy work/movement, he refuses.

5:30 Go upstairs and get him, ask him to help me help him (my fancy way of saying ‘cooperate’). Yelling, mean words, take him to the bathroom, turn on the shower, ask him to get undressed so he can use the shower to calm down. He says he wants to be IN HIS CLOTHES in the shower. I agree thinking “who am I to tell him that feels awful?”. Turns out he didn’t mean it and is upset his new shirt is wet. Terrific. Meltdown gets worse, take his wet clothes off, he storms to his room telling me he hates me and that I should leave the house. I tell him to stay in his room, without ruining anything more and try to relax; I need to regroup and relax myself so I can think of my next move

5:40 Gabe begins yelling “Kill Buster” to the dog. It’s going to be a long night. Especially without my husband home.

5:45 I head back upstairs to see if I can solve the problem. He is surprisingly lucid given the chaos that has just ensued. We talk about how words can hurt (especially me) and we agree that he will get jammas on and take a break upstairs with his flashlight. We hug, and I remind him of what an amazing kid he is, how good-hearted and sweet. I get a big kiss.

5:50 What was I making for dinner? As I head to the garage, I hear Gabriel upstairs crying. He can’t find his flashlight, and can’t get his mind to shift to another activity. Nick lets me know that Matt “scraped” him with his teeth. Where was I? Oh yeah, meatballs from the garage.

6:05 Get meatballs in oven, pasta sauce on the stove, Gabe comes down and asks when dinner is. I tell him 13 minutes, get a great big hug from a smiley boy, and he decides to jump on the trampoline while he watches Franklin’s Halloween show with Matt and Nick.

6:25 Time to eat—signaling the end of the day for me. Cross your fingers it goes smoothly.

6:30 As we eat dinner, and do our “High Lows” Daddy calls and participates with us on speaker phone. Fun and nuts at the same time with everyone talking over each other.

6:35 The dinner conversation turns to talking about kids being mean to Gabriel at school. He says that there is a boy that we know from last year’s class that won’t stop saying, “Open the gate, who do you hate” every time Gabe walks up. I get the feeling the kid is insinuating that he hates Gabriel, but Gabriel thinks that the kid is trying to get Gabriel to name someone that Gabriel hates. Gabe doesn't get that he is the joke in that scenario. Makes me sad. Nick has TONS OF IDEAS on how to solve this social dilemma. My favorite? Teach him “The Sign” that means, “Stop that but we’re still friends” (demonstrated in the photo above) and if that doesn’t work, use the good old standby of “Do it back to him.” Ah to be a neurotypical-know-it-all 5 year old. School is just so much easier for him.

6:47 Dinner is over and the boys are given 20 minutes warning before it is time to get in the bath. But as soon as they are gone, I hear water running.

7:00 Gabe comes back down showered, hair washed and in his underpants. He needs his back scratched. Nick finishes round two of dinner, since he can’t seem to stay at the table, and Matthew is sucking down a juice box; the 5th of the day. I realize I haven’t bought dog food, so the dogs have cut up frozen apples (that our garage fridge accidentally froze), old hot dog buns and some shredded cheese. Hoping I don’t pay for this in doggy diarrhea later.

7:30 Bath time craziness. Get everyone cleaned up (only washing “stinky parts” and skipping hair), and in pajamas.

8:00 Read Shel Silverstein’s Where The Sidewalk Ends, which is referred to as the “Poem Book” at our house. Hungry Mungry, Peanut Butter Sandwich, Lazy Jane, and various other ones before bed. Matt reads Little People open the flap book before he joins us and insists on re-reading the PB Sandwich poem and sleeping with the book by his side.

8:10 Brush teeth; last pee, and into bed.

8:30 Rock Matthew, giving proprioceptive input through tight squeezes, hugs, and pressure against him in my lap. We sing. Sing. Sing. He asks for me to “not squeeze; hug!” and tells me that he just wants to “run, run, run” which is a great indication that he realizes his body is out of sync; we use it as a teaching moment and remind him that the feeling of “run run run” means he needs some tight squeezes. I hold him close on my lap while we sing. I am proud of how much he communicates to me about his body, and inside I smile because I am proud of Gabriel for all he has learned allowing Matthew to have a mommy that understands him.

8:35 Gabe yells, “I can’t sleep,” I yell back, “Yes you can; stop talking!”

8:45 I put Matthew in bed, but no one is asleep. Matthew refuses to stay in bed, and when I lay with him, he is won’t settle down; instead he just chats me up about Handy Manny and his Lightning McQueen birthday party. I am getting more and more frustrated.

9:00 I have hit my breaking point and I am yelling (not my proudest parenting moment). Matt wants me to lay with him, which I don’t want to do (I am tired as hell), and is being ridiculously bossy about how I should sit, not lay, upright in his bed. I leave to regroup in my room alone.

9:05 Matt comes running into my room telling me that Nicholas needs his “Candy Cane” (a small stuffed dog that he hasn’t slept with for MONTHS). I assure Matt that Nick is fine. When I am putting Matt back in bed, I say to Nick, “Tell Matt that you don’t need Candy Cane!” Nick bursts into tears insisting that he DOES need Candy Cane. Really? Can’t someone help me out here?

9:10 I end my search for Candy Cane. Tears from everyone. But that doesn’t change the fact that I can’t find the damn stuffed dog.

9:15 I give in and sit in Matt’s bed, following his instructions to a T. “Sit up Mommy!” “Like this?” “No Mommy! Not like that, lower.” “Like this?” “Perfect.” And in less than 10 minutes he is asleep.

9:30 I call my husband to let him know how resentful I am at him for being out of town. For getting to relax in a hotel room and for taking the night off from parenting and the bed time routine. I am really jealous. Not my proudest wife moment. I tell him that I should get off the phone and just go to bed, because I am tired. He agrees. I can’t stop thinking about the fact that he is gone for 3 nights this week, 3 nights next week, 3 nights the first of December and 3 nights the first of January. It makes my head spin, so I click So You Think You Can Dance off and go to sleep. I have to start all over again tomorrow and I still haven't unclogged the toilet. *sigh*

Good Night,

H

Right-Brained Math and Writing Standards

Homework seems to be getting harder and harder for Gabriel.

I was originally just stoked on the fact that his homework was primarily math, but even that seems to be a challenge for him these days.

It isn’t exactly the “math” portion, it is the right brained explanation that is required that gets him every time.

Example:

We had done three of four math problems—all story problems about coins. I do the writing for him, time saver and with handwriting issues it provides frustration relief. OK, so we had agreed on using “hash marks” to log our numbers.

15 whatevers plus 16 whatevers gives us 31 whatevers when we count up the hash marks. Easy.
For both of us.

Then we move to the last problem, it says that Dave had 22 apples, but used 7 of them to bake a pie. How many left?

I say, “Should we use hash marks again?”

Gabriel says, “No.”

“No?” I say confused, as this is the established format.

“We should count.”

“Sure, but how are we going to write that?”

He looks confused.

“We need to use the hash marks so we can tell how many we have. Right?”

“No, we just need to count.”

“Should we draw apples?”

“No. Count.”

“Ok, Gabriel, I get that we can count the answer in our head, but the work requires us to write down how we got to the answer.”

“I don’t understand.”

“Whatever we do, we have to write it here (as I place my hand on the paper). Whatever we do to solve the problem, must be written down.”

He is visibly frustrated.

Gritting his teeth at me.

Tearing up.

“Fine.” He grabs the paper and begins to write on it.

I look at it, it says “C” and “o”…

“What are you writing?” I ask, clearly this wasn’t hash marks or apples.

“ I am writing ‘counting’.” He responds.

“You can’t just write the word.” I tell him, although I completely understand why he thinks that is a good solution.

“I just don’t get it!!” He yells and storms out of the room.

*sigh*

How do I explain to my little black and white thinker that math has to be so right brained?

I know that we all have to learn the “process” of math so that we can build on each skill, but in some ways I call BS on that.

When I was a kid, I saw the answers in my head too. I got that 7 came out of 22 easily—but I had to show my work too. And that drove me nuts.

My mother was the same way. She could do my math problems virtually through calculus—in her head—no equation.

At some point, for my kid, I think knowing the answers trumps knowing exactly how he got there. But that’s just me.

Our other homework issue is obviously all of the writing.

There is no way we can write as much as is requested of us.

We have been struggling on a book report for two weeks.

Yesterday I broke down and wrote all of it for him (his words, my writing).

I know that is a solution, but I sure wish he had some kind of endurance.

Gabriel has an amazing amount of things to say—like most kids his age he is always thinking of something new and wants to share it.

Having him tell me his monologues verbally is OK (kind of grates your nerves some days) but if he could write it down that would be even better.

I got contacted by Handwriting Without Tears yesterday—a program Gabriel has been using since Kindergarten (over 3 years now) and that our school district adopted as curriculum last year.

This is a program I am very familiar with, but that isn't what they wrote about.

What they shared is that Handwriting Without Tears has created a new website (www.handwritingstandards.com) that is aimed at getting the educational community together to support implementing a Writing Standard for each grade level Kindergarten through 4th grade in each state.

My initial reaction was, “Oh great, another thing my kid can’t do.”

But after reading more about it, I am leaning the other direction.

Gabriel’s handwriting has been “behind” but “legible” (which is all that is required to deny him services--"legible") by school standards for his whole life (up until now maybe...lol).

During our IEP meeting this year, the school OT brought out a writing sample that was only 1 year old of Gabriel’s and it was obvious how far he had regressed—which is only ironic since last year’s sample was “on track” because he had been held back a year, so he didn’t receive additional writing help--didn't qualify for small motor skill writing support by law.

I put him in private OT all summer (and still this year in addition to school) to keep his handwriting moving forward, or at least not slipping further backwards.

The HWT Company aims to help this problem by outlining specific and measurable goals for kids’ handwriting by grade level.

An example that would’ve gotten Gabriel more help earlier in his life, and is PRETTY DAMN BASIC for kids in the 1st or 2nd grade would be, “Writing all of the letters of their first name correctly, without reversals or omissions”.

Hmmmmm.

If we had specific guidelines, attainable goals to work toward in Kindergarten, Gabriel would’ve qualified for help. He would've qualified in first grade too. And first grade the second time as well. : )

He would’ve had an IEP sooner.

And potentially had goals that could’ve really helped his writing.

That said, I should reiterate here that I have been more than impressed with Gabriel’s IEP “Team” at his school. They have always given more than was required. Always.

But not all schools work like this.

What about all of the other kids I hear about with SPD or PDD or a combo of other diagnosis’s that aren’t getting services they need because of this or that?

I am not sure exactly what my "official" stand is on this new Handwriting Standards, but I know that more help for my son is rarely a bad idea.

There are tons of arguments about whether or not kids should be forced to write. And I have to say when it comes to cursive, I think it should be an optional program—like an elective—in my opinion. I think cursive is a thing of the past—a dead art for many.

But printing is different. At some point, our kids have to write something. And they want to write. Gabriel WANTS to write what he is thinking down--but it frustrates him and makes him feel stupid when he can't.

Getting your ideas out on paper is self expression—it is showing the world you have something to say.

I am teaching Gabriel to type. That is good too, but that isn’t a permanent solution for him today.

And he will go to college. I hope.

So that means writing an essay for his SATs.

Basic printing would be a good skill by then.

And luckily, I think we are on track to be able to print legibly by about 2018—just in time for his junior year.

Until then, it is back to the homework grind for me. And Gabriel.

Maybe Nick will be able to scribe for Gabe soon?

My hand gets too tired. ; )

If you have any comments on the Handwriting Standards, I'd love to hear your feedback.

Hope school work isn’t getting the best of you,
H

Resiliency

Yesterday on the way to a yard sale with my family, we stopped at Bank of America to get some cash and turned around in the gas station parking lot. As we drove through the parking lot, there was this woman, carrying a car seat across the parking lot with a preschooler in tow; they were heading towards a man standing behind his truck. The man bent down, lit up and the boy went running to him. They were meeting for his visitation.

I don't know what exactly struck me about this, but it really got my mind thinking about how hard it is to keep a family together. Not that marriage for anyone is easy, but for families with special needs children the chaos and stress level can be so high, it is a wonder that anyone stays married. Yet, it might be even more paramount that families with young special needs kids do stay married--those adults need the support of their spouse more so perhaps than average couples.

I had friends visit last night, great friends actually, and she is recently engaged for the first time at 42. I couldn't be happier for her. Her fiance has been married before, and I read recently that the divorce rate for second marriages is like 83%--about the same rate for families with special needs children. 83%-that is amazingly high.

With the visitation scene fresh in my mind, and my friend entering into a new marriage (she has a young son as well) I began thinking about what it really takes to maintain a relationship--what it takes to beat the odds. How can my family maintain resiliency?

James May has a great lecture on the subject here in our area, but even after that talk (two years ago) my husband and I didn't feel like we got any great tips. We actually left that meeting feeling thankful that our "special needs" kiddo wasn't worse. Horrible, I know, but being in a room full of families who had kids that needed physical assistance for everything from eating to walking made us feel thankful to have the problems we did. I definitely do not have the ability to lecture on resiliency, and I by no means am an expert on the subject. However, I do know that there are a few things that help me, and so for all of you moms out there that feel like you are about to become a statistic, here are my two cents:

Humor--James May suggested this too, and most of you know me well enough to know that this is about all I have most days. My husband and I genuinely make each other laugh. That attracted me to him to begin with and sure helps still. Also, there are many days when the yelling, screaming, and feeling completely useless in helping our son that we have to step backwards and simply laugh. How in god's green earth did we get here? Three boys, chaos, a dog, a mortgage, appointments....It adds up quickly--and sometimes I still feel like that 21 year old girl who was barely making rent. LOL

Support--I can't stress this one enough. I am so incredibly lucky to have women on my side, women who have kids like mine, in all of the good and bad ways. Those women hold me up emotionally when my legs are too weak to stand. Find an emotional support system--those women are NOT necessarily your best buds, they are not necessarily your social group, they ARE the only people in the world who "get it". Online or on the phone find someone you can reach out to when your life overwhelms you.

Babysitter--Find someone who can handle your kids. Anyone. A friend, a family member, a teacher, neighbor, ANYONE. Then leave them. :) You MUST have time away from the chaos, even when the chaos is at its worst and you think that the world might literally stop spinning if you took any time for yourself. It might start that you go to visit one of those women on your "support" list--another family that no matter how bad your kid is, won't care. Will empathize, not criticize, and will not under any circumstances think that you should simply be harsher or spank more.

That is my three step program. I think all good programs have 12 steps, but that seems like a lot to remember, and I know you are reading this between your child's meltdowns or OT appointments and don't have the time to read nine more steps. LOL Oh, and I want you to actually use these tips. Start practicing these today; it will give your marriage a fighting chance and I know you are *great* at fighting for your family--you have been honing those skills while battling the insurance company, the neurologist, the school district and god knows how many others (in laws, neighbors, grocery store starers)--start fighting for your marraige too!

I hope you are all having a great weekend. I am going to watch some football with my hubby, shower and head to a play with my girlfriend Shellie; Spring Awakening. Seems like an odd one for the cold and wet fall here in Seattle, but time away is really all that matters.

H