Walking a very fine line. . .

As the parent of two children on the autism spectrum I walk a fine line every minute of every day. I never know what is going to happen or when.

There are lots of books and people out there, who will tell you that you can increase predictability for autistic children through routine. Those same sources will warn you that changes in routine will set off typical autistic behaviours.

CHARACTERISTICS OF AUTISM SPECTRUM DISORDER

Individuals with an Autism Spectrum Disorder develop repetitive behaviour, rituals, and obsessions, which help them to order their world, creating some predictability. Stereotypical autistic movements are rocking and spinning, although other common behaviour include flicking hands or fingers in front of their eyes, tapping objects and mouthing objects. They can also develop obsessions with items, places or subjects and regularly become dependent upon certain routines. If routines change without warning this can cause great distress, leading to difficult behaviour.

What these books and experts don't tell you is that a strict routine is possible only within your family's limited sphere: your house, possibly grandma's house and, if you're really lucky, your daycare center.

These are all places where we have implemented a routine, which works for our family. As long as we don't leave the house, we get some peace of mind. We were also very lucky to have a wonderful daycare center, who watched our now 7yo Tazmanian Devil from the time I went back to work when he was only 5 weeks old adjusted age (10-weeks).

Taz still goes to that same daycare after school, because I work full time, even though I tele-commute.

Our daycare has put up with a lot from Taz over the years, including untold medication doses and asthma treatments, 3 years of biting, 2.5 years of potty training and his destructive behaviour when he is not on his medicine.

When Taz was in after school in pre-K he cut the wires to the older kids' video games. . .three hours later when the director discovered the cut wires and asked him if he knew anything about it, Taz said he got the scissors and cut the wires and they fired his hands.

She nearly fainted before she called me and I assured her that after 3 hours he was probably fine. At least they did not kick him out.

School, however, is an entirely different story.

Taz went to Montessori for pre-school, then attended state pre-K at his daycare center and transferred to his sister's charter school for Kindergarten.

Kindergarten lasted exactly 2.5 days. The teacher was totally uncooperative, despite having Taz's written diagnoses in advance (Severe ADHD, SID and ASD among other health problems), and Taz simply could not sit at a small table with 5 other kids in a small classroom with 20 kids and 1 teacher.

By the third day of school, we had a choice of withdrawing him or going to the board to protest 6 written notices of violations within 2 days.

Thank God our Montessori school was willing to take him back for Kindergarten and the first semester of 1st grade on very short notice.

Unfortunately, by the middle of first grade, we had no choice but to move him to the public elementary school, because of his severe reading issues. We needed an IEP and thought we would get one quickly with all of his diagnoses.

NOT so. They had to do intervention first, then SST. . .if you know the IEP process you know what I mean and, if not, well I hope you don't have to go through it. If you do, contact me through my website. . .IEP stuff is a whole nother blog.

To make a long story shorter, we are finally in the IEP 60-day process window and hope to get a full IEP in early Nov. when we have our final meeting. In addition to resource time for reading and writing, we will put modifications in place to address Taz's sensory issues.

Which brings me back to the point of this blog. . .walking a very fine line. . .

We never know what is going to trigger Taz's sensory issues outside of our protected sphere-home and daycare. Taz's issues include food sensitivities (on top of food allergies), sometimes extreme sensitivity to light and sound and the inability or unwillingness to use the restroom before he gets desperate and sometimes not even then.

We have had a number of pottying accidents at school, since moving him last Jan., and he hasn't even completed two semesters there yet. Today we had two and he had only one change of clothes. I guess I will send three changes from now on.

Seriously though, I have no idea why he has suddenly started having multiple accidents at school, at gymnastics and even at our soccer field, but I suspect that sometimes he simply cannot feel the need.

The problem is that Taz totally understands what is happening and he often refuses to take the time to go. It disrupts "his" routine.

He is a very smart boy, who is head and shoulders about his second grade class in verbal ability and subjects other than reading and writing, and he is very stubborn, but he is not at all bothered by what is happening to him. He knows from past experience that Mommy and Daddy will bail him out so to speak i.e. provide new clothes and let him go back to what he was doing before.

NOT THIS TIME.

With autistic children, discipline is difficult, since there are times when the kids cannot help their behaviour. There are other times when they can, but children with sensory issues don't respond the same way to timeouts, being grounded, losing privileges etc. . .

As a parent you have to be very careful about what privileges you take away or what restrictions you place on your child's behaviour, because some of those privileges may be your child's only means of calming/soothing themselves.

For instance, I usually lock up my 13yo daughter's Wii (I literally keep it in a TV cabinet that I can lock on a moments notice) when she does something wrong that I know she could have controlled/avoided. She then has to earn it back.

One day I took away her Wii for repeat issues at home and told her what she had to do to get it back.

My daughter actually came to me after about an hour, told me she had a bad day at school, said she needed her Wii to calm down and offered to do extra chores to get it back right away. That was a no brainer, I had to say yes, and I was sooo proud that she was able to verbalize her feelings for once.

The same applies to my son, he uses Lego's, crafts and TV/videos to calm himself when he's stressed. He also thinks all of the above are a right, not a privilege.

Today when we had to pick him up from school at noon, I made a really tough choice.

I turned into Nanny 911.

I sent him straight up to his room and then gutted it. All the toys, all the books and all the crafts. It was a horrible mess anyway, but that's not the point.

When I finished, I told him he had to sit there for an hour on his bed and said I would remove the TV and VCR if he even tried to turn them on.

After an hour, I went back in and we talked about how he can earn some of his "stuff" back. Then I turned his TV on cartoon network and told him to stay on his bed until we are ready to leave for his gymnastics class.

The little "monster" fell asleep with the TV on.

Just goes to show me that he needed it to calm him after all and I am surprised he lasted an hour without it.

The nap also means that he is undoubtedly getting sick.

Taz does not nap!

And, getting sick, is probably the reason for his accidents.

Did I make the right choice?

I don't know, but I'm sticking to it, because I have now set the NEW ROUTINE in our house and I can't back down. I'm sure the nanny would agree with me, but other special needs parents might not.

Thus, the thin line. . .

I WILL NOT FEEL GUILTY, I WILL NOT FEEL GUILTY, I WILL NOT FEEL GUILTY,

I WILL NOT FEEL GUILTY, I WILL NOT FEEL GUILTY, I WILL NOT FEEL GUILTY

Nianya

Sensory Overload

Hello all,

I'm new to Autism Learning Felt, but not to parenting special needs children. My story is a long and ongoing one, but you can read all about it on my special needs parenting site. The short version is that I am the mother of two special needs children, both on the Autism spectrum, 13yo Jessie and the 7yo Tazmanian Devil.

Both kids have different issues: Jessie used to be non-verbal and still is to a certain extent, especially when she is tired or flustered. Taz has major sensory issues, with sounds, textures and smells, which worsen if he's tired, hungry or getting sick.

We try to plan our days in advance and leave plenty of room for flexibility, but it's very hard, often impossible, when we're trying to please everyone or rather when we're trying to please both kids at the same time. Most of our outings end in sensory overload, i.e., one or both children melt down.

This whole week was a typical example of one meltdown after another.

As many of you probably know, North Georgia was subject to record flooding just two weeks ago today. The kids missed a week of school, which meant that both mom (me) and dad were stuck working from home with two ASD kids for five days straight, three of them with no running water. Don't get me wrong, we were blessed. We had food, electricity and a dry roof over our heads.

We spent last weekend cleaning up from the mess and most of this week driving around the numerous road detours just to get to school, work and our regular evening activities.

Wednesday night we went to the fair; a trip, which we had planned well in advance, since it was our only free night/day to go. We were an hour late getting there, because of all the traffic, Taz was humming in the backseat, which he frequently does to calm himself during car rides, and Jessie was freaking out in the middle seat, because her arm hurt and Taz was humming.

A 7yo in the middle of a 2yo meltdown is a sight to see, but a 13yo is unbelievable, especially when the meltdown is combined with a panic attack complete with hyperventilating.

We should have turned around, but we didn't, because that was our only chance to go to the fair this year and I really wanted to see if one of my photographs, which I entered just hours before the floods hit, had won an award.

So on to the fair we went.

It was a lose-lose situation.

The kids only rode about 4 rides each after we spent $50 on tickets, I wasted half my cash trying to win a couple of 30 cent goldfish to replace the huge ones in our backyard pond that were lost in the flood, Taz melted back down, because I would not waste my last $5 dollars on the fish game, and then he melted down some more because the only thing at the fair which was gluten-free/casein-free was a tiny package of cotton candy for $5. Naturally Dh and I refused to give an overstimulated, severely ADHD/autistic child, pure sugar when he was already hyper-stimming without it.

And, to top it all off, I couldn't find my favorite photo in any of the displays, so Jessie nearly lost it again. The photo was an action shot of her playing soccer and it took me several minutes to explain to her that it was a digital photo and I did not lose the original one.

In the end, we only stayed for a little over an hour.

At this point, you're probably thinking that our fair experience was nothing more than what every parent experiences on such an occasion.

All children whine when they are hungry and tired or when they run out of ride tickets and have no money to waste on games and rides. They also scream when their parents tell them its time to go after they've ridden the roller coaster for the umpteenth time.

My kids scream from sensory overload. Too many lights, too much noise and too much motion. We had a good time at the fair the past couple of years, because we went on the last Sunday morning when practically no one was there and the kids could ride for free for the first 2 hours. We left when everyone started showing up.

This year, we had a choice. Go on a weekday night, when the kids were already tired and hungry and the fair was packed, or not go at all. We really should have opted for NOT. A lesson well learned and a mistake that we will not repeat next year.

All was not lost, however, since we found my soccer photo on the way back to the car. Turns out my photo did win a prize and Jessie spotted it immediately high on a wall with other sports memorabilia.

You would think that I could spot a picture of my own child from a mile away, but that is my life in a nut shell. I have just enough energy to get through life with two special needs children, one day at a time. I never see the forest, because I'm too busy caring for my two trees.

And, on the way home, my tallest tree was beaming about her award winning picture. . .hers, not mine, while my smallest tree was happily hugging his $.50 blow up Scooby Doo, which I bought him on the way to the gate, with my last $5.

I never know what will cause them to melt down or what will make them deliriously happy, but I will do anything to avoid the former and/or experience the latter and, in the future, I will strive to remember that it is better for my kids to miss the fair, then to go on a busy night when they are tired and hungry, just so we can say that we went this year.

Nianya
Website: www.magicalmischiefmaker.com/
Twitter: @MagicalMischief