Frustrating day......

Today was extremely frustrating for both Dylan and I.  He had a pretty good day at school but about an hour after he was home, I could feel things going downhill.

I tried hard to get things moving in a better direction.....we did some spinning but in his mind, I wasn't doing it right today.  I have NO clue what that meant since I'm pretty convinced I was doing it exactly like we always do it and when I asked him what I needed to do differently all I got was I needed to do it "right."

Then he wanted me to race monster trucks with me.....and I wasn't lining then up right.  I wasn't pushing them right.  But when I tried to go do anything else in the house, he would meltdown completely...throwing toys, hitting, punching.

The afternoon continued like that and once we picked K up from school, it got even worse.  He just went from one thing to the next....he wasn't happy.

As frustrating as it is for me, it breaks my heart to see him so frustrated and upset.  And more than that, I HATE that NOTHING I tried helped....not one bit.  As a mom, that is an awful feeling.....awful.  I feel like it's crazy cycle in our house and I feel like I never, ever get a "down" moment.  It's the way it is and I get that but that doesn't mean that there are moments that I want to run away screaming.

Tomorrow starts his evaluations with the school district......hoping that it goes well.

Underactive....

Underactive is NOT a word that I ever thought I would use when talking about my Dylan. :-)  Nope!

Several weeks ago I had asked Dylan's OT to take a look at his vestibular function.  I had been seeing some things that made me wonder if he had something a little off with his vestibular system.  Both Kira and  Eva have an overactive vestibular system.

Children with overactive vestibular systems prefer slow movement, avoid risk-taking and avoid activities that require good balance and fast movement. They are fearful of falling, elevators, going up and down stairs and being tipped upside down.

I was pretty convinced that Dylan wasn't dealing with an overactive vestibular system but I was feeling pretty sure that he was dealing with an underactive vestibular system. (of course, right??)

These children enjoy fast spinning and swinging. They enjoy jumping, partake in dangerous activity and move while sitting.

Movements suggested for these children help their brains organize and process information more effectively and efficiently by using a series of physical activities to activate the vestibular system.
This prevents falling, keeps body parts properly aligned, and contributes to coordinated movement.

After his OT did some testing with him, she said that he definitely had signs of an underactive system.  I really did laugh when she told me.  I already know a lot about the therapy for overactive systems from the girls but sure why not....let's look at the other side now! :-)

Dylan LOVES spinning but he has a pretty big reaction to it too.  He gets pretty dizzy quickly but even with that feeling he wants more.  So we are doing some spinning therapy with Dylan and unlike the girls, he LOVES it.  It's tricky because we have to watch him pretty close while we are doing it and we have to be the ones to stop because he'll just keep going.

The Vestibular system is located in the inner ear. It responds to movement and gravity and is therefore involved with our sense of balance, coordination and eye movements. Therapy can include hanging upside down, rocking chairs, swings, spinning, rolling, somersaulting, cartwheels and dancing. All these activities involve the head moving in different ways that stimulate the vestibular system. The therapist will observe the child carefully to be sure the movement is not over stimulating.

Back and forth movement is typically less stimulating than side-to-side movement. The most stimulating movement tends to be rotational (spinning) and should be used carefully by the therapist. Ideally therapy will provide a variety of these movements. A rocking motion will usually calm a child while vigorous motions like spinning will stimulate them. Merry-go-rounds, being tossed on to cushions or jumping trampolines can be favorite activities with some children.

(More info here)

So another adventure for us but the good news is that we were able to borrow a spinning board from his OT and all 3 kiddos take turns doing it!

He tried so stinkin' hard!

This morning Dylan had his dentist appointment.  I wasn't overly concerned about it because he's done pretty well in the past.  It usually took a few minutes for him to warm up to the idea and then he was fine.  It's far from his favorite thing to do but I think that's true of most people. :-)

Well today was an entirely different store.  He was fine when we got there and even went back very willingly.  As we were walking back he asked for his B-Calm so we put that on and he climbed up in the chair.  She started looking at his teeth and I could see it coming.  I could see him getting more and more tense with honestly each second.  I tried a few things hoping to avoid the meltdown I could sense but nothing worked.  Before I knew what happened he was out of the chair, running down the hall.

I eventually got to him and he was so upset.  It broke my heart.  I got him to come back in with me and by then the dentist was in the room.  We decided that we needed him to at least get a look in D's mouth.  He didn't fight us too much as I pretty much bear hugged him through that part.  Fortunately, the dentist said that his mouth looked really healthy and he was comfortable waiting to clean them at his next appointment. And luckily I don't have to think about that for another 6 months.

Love this!

Welcome to Beirut

by Susan F. Rzucidlo

(Beginner's Guide to Autism)

"I am often asked to describe the experience of raising a child with autism-to try and help people who have not shared in that unique experience to understand it, to imagine how it would feel. It's like this.."

There you are, happy in your life, one or two little ones at your feet. Life is complete and good. One of the children is a little different than the other but of course, he's like your in-laws, and you did marry into the family. It can't be all that bad. One day someone comes up from behind you and throws a black bag over your head. They start kicking you in the stomach and trying to tear your heart out. You are terrified, kicking and screaming you struggle to get away but there are too many of them, they overpower you and stuff you into a trunk of a car. Bruised and dazed, you don't know where you are. What's going to happen to you? Will you live through this? This is the day you get the diagnosis. "YOUR CHILD HAS AUTISM"!

There you are in Beirut, dropped in the middle of a war. You don't know the language and you don't know what is going on. Bombs are dropping "Life long diagnosis" and "Neurologically impaired". Bullets whiz by "refrigerator mother" " A good smack is all HE needs to straighten up". Your adrenaline races as the clock ticks away your child's chances for "recovery". You sure as heck didn't sign up for this and want out NOW! God has over estimated your abilities.

Unfortunately, there is no one to send your resignation to. You've done everything right in your life, well you tried, well, you weren't caught too often. Hey! you've never even heard of autism before. You look around and everything looks the same, but different. Your family is the same, your child is the same, but now he has a label and you have a case worker assigned to your family. She'll call you soon. You feel like a lab rat dropped into a maze.

Just as you start to get the first one figured out ( early intervention) they drop you into a larger more complex one (school). Never to be out done, there is always the medical intervention maze. That one is almost never completed.

There is always some new "miracle" drug out there. It helps some kids, will it help yours? You will find some if the greatest folks in the world are doing the same maze you are, maybe on another level but a special-ed maze just the same. Tapping into those folks is a great life line to help you get through the day. This really sucks but hey, there are still good times to be had. WARNING! You do develop and odd sense of humor. Every so often you get hit by a bullet or bomb not enough to kill you, only enough to leave a gaping wound. Your child regresses for no apparent reason, and it feels like a kick in the stomach. Some bully makes fun of your kid and your heart aches. You're excluded from activities and functions because of your child and you cry. Your other children are embarrassed to be around your disabled child and you sigh. You're insurance company refuses to provide therapies for "chronic, life long conditions" and your blood pressure goes up. Your arm aches from holding onto the phone with yet another bureaucrat or doctor or therapist who holds the power to improve or destroy the quality of your child's life with the stroke of a pen. You're exhausted because your child doesn't sleep.

And yet, hope springs eternal.

Yes there is hope. There ARE new medications. There IS research going on. There are interventions that help. Thank God for all those who fought so hard before you came along. Your child will make progress. When he speaks for the first time, maybe not until he is 8 yrs old, your heart will soar. You will know that you have experienced a miracle and you will rejoice. The smallest improvement will look like a huge leap to you. You will marvel at typical development and realize how amazing it is. You will know sorrow like few others and yet you will know joy above joy. You will meet dirty faced angels on playgrounds who are kind to your child without being told to be. There will be a few nurses and doctors who treat your child with respect and who will show you concern and love like few others. Knowing eyes will meet yours in restaurants and malls, they'll understand, they are living through similar times. For those people you will be forever grateful. Don't get me wrong. This is war and its awful. There are no discharges and when you are gone someone else will have to fight in your place.

But, there are lulls in wars, times when the bullets aren't flying and bombs aren't dropping. Flowers are seen and picked. Life long friendships are forged. You share and odd kinship with people from all walks of life. Good times are had, and because we know how bad the bad times are, the good times are even better. Life is good but your life in never normal again, but hey, what fun is normal.

The ball is REALLY rolling now....

I mentioned in this post that I had finally been contacted by the school district and the process to see if D would qualify for services had started.  Well, today I had the first meeting to decide where to go with the new information.  Well, ONE REPORT is basically all it took to hear that yes, Dylan will qualify for services.  ONE REPORT!

The teacher in charge of D's "review of existing data" would like to observe him 1 or 2 times at school and possibly work with for a bit since she'll be writing the IEP.  We are also going to bring in an OT to do another evaluation.  I think that's a good idea since I was less than thrilled with the OT we had last time for several different reasons.

I also did get some validation (for lack of a better word) that the last round of evaluations did have a lot of question marks on how it was done, things that happened, etc.  I'm trying really hard to not be too upset over that....it's more important to focus on what we can do now and get him set up for next year.

The school district has 60 days to complete what ever evaluations and observations they want to do and then we'll meet to write the IEP and go from there.  

To say that I am relieved doesn't even begin to explain how I'm feeling.    I know that having a IEP and supports in place for Dylan doesn't guarantee that it will be smooth sailing when he gets to kindergarten...I know there will be bumps in the road but hopefully this will make things a little more smooth for him.

Get the job done!

I've lost count of how many different chore charts/lists/signs I've done since the kids were old enough to have one.  The most recent one I had was this Melissa and Doug Responsibility Chart.  I thought it would work really well since it we could do it day to day and there was only room for 7 "chores."  Dylan had get dressed, brush teeth, make bed, etc.  The "problem" was that in the morning when were trying to get ready to go out the door, he was wanting to do things on his chart that we just didn't have time for like emptying the dishwasher, vacuum, etc.  Frustrating for all of us.

Kira's FABULOUS OT gave me some great suggestions and the one that I decided to try was using popsicle sticks with one job on each one.  The idea being that you put only as many as your child can handle out at a time.  Once they complete a task, then they move that popsicle stick to a different container or cup, which is what we are using.  It's working GREAT for Dylan.

I am able to really break his tasks down to what he needs to do to get out the door for school, a couple of afternoon tasks (helping me clean something, reading with me, doing a worksheet, etc), and before bed tasks.  This system has been working better than anything we have tried.

These are typically the tasks that he needs to do before we leave for school.....

These are some of the choices I use for a couple of afternoon or early evening jobs.  Late afternoon is typically a rough time around our house so I try to have one job that he can do while I'm making dinner...emptying the dishwasher has been one of his favorites lately. :-)

These are the ones that I put in after dinner.  Luckily he's really good about knowing what "get ready for bed" is so I don't have to break that one down anymore.

(I found the chore "squares" here.  They have velcro on the back on them so I just added a small piece of velcro to each popsicle stick and we were good to go.)

We've been using this system for a little over a week now and so far, it's made all of us very happy!

Star coins

The last few months I have really struggled transitioning Dylan from school to home.  He would fight and argue with me about getting his backpack, carrying his lunch box, getting in the van, etc.  As frustrating as it has been for me, I KNOW that it has to be even more frustrating for Dylan.  I've been on a mission to break this cycle.....for all of us.

Today I tried something new.  We've been using these star coins at home when we catch him being really good, listening the 1st time, etc.  I decided that I would bring them with me to school when I pick him up.  I asked one of the teachers to remind him that if he walked out and got in the car with good behavior that he would earn a star coin.  And guess what.....he did it.  I was actually a little shocked that it worked but thrilled. 

What' the incentive for earning coins?  Well this time around once he earns 10 coins he gets a new monster truck.  Once he reaches a goal, we'll set another one.....increasing how many coins he need when appropriate.

(I found these here.)