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.
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