Waiting for the other shoe to Drop


2015-11-13 14.03.18There are no guarantees in parenting, and many parents know the feeling of lying awake waiting for the other shoe to drop.  Parents of children with special needs are not waiting for the other shoe to drop, we are waiting for a big boot to come and kick us in the head when we least expect it.

When Evan was a baby the doctors didn’t really have any concrete answers about what to expect for his development.  Now he is 7yrs old and they still don’t have any.

When he was a baby we had an Occupational Therapist come to our home.  When he met all his milestones and took his first steps at age one she closed his file.  The relief I felt was immediate and amazing.  He was OK! He was going to be OK!

Yes I had noticed that he didn’t sit up straight like other toddlers, but his OT couldn’t be too worried, she closed the file so we were ok…. Right?

Wrong!   Sometimes when the therapist meets their targets they have to close the file and move on to the next child.   He has needed much more occupational therapy and other types of therapies over the years

What you also might not know is that some of the skills that you, your child and your team worked your butts off to achieve can still be lost.

Evan had been doing well in Occupational Therapy, but he aged out of the system. (More on this another day.)  In school the focus was on class work, and teachers are not trained to evaluate or provide occupational therapy.  My focus also shifted to academics instead of fine motor skills.  Therefore  when he saw his Occupational Therapist for a Screening she was very disappointed in how much he had lost in way of skills.  I have recently noticed that some things I had thought were resolved after years of speech therapy are starting to creep up again.   These issues are gradual and seem to be the result of not having consistent therapy.

Some children experience a regression that is sudden and can seemingly take skills and functionality away out of nowhere.   I was told about a woman whose child underwent a regression for several years.  This child forgot how to get to school, and could no longer find their way between two points.  i.e.  The parked car and a store down the same street.  From what I understand, they eventually began making gains again and retrieved that functionality.  These parents no longer have the luxury of waiting for the other shoe to drop, instead, they are waiting for a boot to kick them the head… again.

The scary thing is the doctors don’t have the answers.  Sometimes they don’t know what caused the regression.  Even if they do discover a cause they can’t tell you how long it will last, how much progress will be lost, or when or if the skills and functionality will be regained.

We parents try to be aware of what skills our children are developing, what skills they have and watch like an eagle for anything that seems out of the norm for them.

So, us parents of children with special needs might seem paranoid, or hypervigilant but we do have cause… I assure you it isn’t nice waiting for a boot to kick you in the head.


Adjusting Halloween Expectations

IMG_20151031_181217-1-1Every parent has expectations of Holidays. These visions will vary depending on Religion, Culture, and Individual family Traditions.
I expected Halloween with a 7-year-old to look like this:
Trick or Treating would be costumed children running in a pack from house to house in the race for MORE CANDY! I would have expected my little boy to argue or plead with me to stay out later or to go to just one more house. Later everyone would get together to rehash the night and compare candy hauls while eating themselves sick. (A time-honoured tradition)

Evan has what is referred to as high functioning Autism, so we have had to adjust what our expectations are. For us the important thing is that he has fun and that he enjoys as much of the experience as he wants to.

Most years he is sick around Halloween, this year we were happy because he was healthy and we weren’t dragging him out when he wasn’t feeling well.
He wore his Luigi costume that he chose with his dad and loved, and allowed his dad to paint a mustache on him. (I can’t tell you how HUGE this is)
We went Trick or Treating as a family, no pack of kids to race with but he was excited to run into a friend from school. He walked from house to house carefully navigating the stairs and the pumpkins. (He has balance issues) After little more than an hour he was done, instead of him begging to stay out he had us urging him to just finish the street before we went home.

We have enough candy said no child ever on Halloween…. Except for Evan

At the end of the night he was happy with his haul but didn’t ask for any.  I gave him a bag of chips which he quietly ate while going through the Avengers Comic book he got at one house. (Best treat ever!)
He had a great night, it wasn’t quite what we would have expected but he was happy, he participated and most importantly he had fun.

Have you had to change your holiday traditions or expectations’?