Tuesday, October 21, 2014

New School New Start...

As many of you are aware the turning three transition is difficult.  Leaving the comfort of early intervention and jumping into the public school systems where you learn all about inclusion and IEP's.  Then once you get the hang of that there could feel like "ok, I have a handle on this" and of course there are thos up and down days, possibly wondering if the child is in the right program or arguing with the schools for better services and staying on top of things to ensure that your little one one gets what s/he needs.

I'm here to talk about our experience. Once our son turned three it wasn't easy getting him the services he needed and after 3 years of arguing with the schools, having  advocates and attorneys involved we realized it was cheaper to move.  So...after much research we ended up getting him into a system that had what he needed.

He had a smooth transition and everything was great up 4th grade, that's typically when school just gets harder in general for any child, throw a disability into the mix its just not pretty.

Fourth grade is the year I refer to as "the year from hell" things just fell apart for him. Academically he did better his behavior and emotional state was all over the place...

Then throw in a bad match with the teacher?  Disaster...

Thinking back, all the signs were there, about a month after school started behaviors we had never seen before cropped up. The "team" put a behavior plan in place that we weren't comfortable with from the beginning but, we felt like we needed to try it (sometimes you just have to try, at your childs expense, we were out of options...) to see if we could extinguish the behavior.  He was missing crucial social opportunities (lunch in cafeteria, holiday parties, recess)...because he was getting "time outs".... What happened to my happy, sweet and easy going boy???

Shortly after, this plan was put into place, the "I hate school" comments came, the stomach aches (which at the time  I chalked up to his reflux acting up)... then two days prior to Christmas break he came home uncontrollably crying, but couldn't really tell me why (part of that developmental/autism thing, feelings are just hard)....so we decided to keep him home until after the holidays were over...he had a peaceful winter break and was happy!!

  Fast forward, January 3, first day back to school and he is dry heaving in the car. Ok.  I no longer need to be whacked over the head with signs.  Just like back in the NICU we are in crisis mode, several calls are made to appropriate personal who were amazing in helping putting out the fire and get outside specialists to come in and evaluate what was going on.

Was it smooth sailing after that?  HECK NO!! Rest of the year was hard because the student/teacher relationship was strained, and trust was broken ....(another post possibly for another time)....

5th grade was a little better. I call 5th grade it the "lost year" He had regressed due to his 4th grade experience, but his 5th grade teacher was good about backing off on demands and letting him regroup. We put him on Celexa for his anxiety and he was overall happier...calmer...still had episodes of behavior  but they were fewer and far between.

Now, fast forward once again.  Middle school, another transition year. New school, new start.  We have been blessed with a wonder staff, and  we seem to have our quirky yet happy boy back, of course its not without challenges but overall hes better..and we even get reports that he is "FUN"....something we haven't heard in a while.

Lesson learned and once again, don't ignore your mummy tummy....

5/13/17  Three years later, wow time went by so fast, My son grew up so much these past three years and I realized staff makes a huge difference in your child's success. We are now  working on transition to High School in September . You always hear horror stories about middle school but in our case we had an amazing 3 years.   The RIGHT program makes a world of difference. 


Wednesday, May 14, 2014

Social Opportunities...

How many of your struggle with finding simple social opportunities for your special needs child.

I know there are programs out there like local social skills groups, programs through the Department of Developmental Services (DDS), even places like ARC has local recreation opportunities or Special Olympics. Then there us summer school programs through the school system.

We do all that. All these structure groups are great but when do our kids get to be real kids.  When do they get to go outside and play like we used to just riding there bikes and just be kids.

Sure we can set up playdates for our kids, easier when they are young, but as they get older past 3rd grade (or worse 5th grade like my son) kids change, interests change and if your anything like me your child's interests have not changed.

Ok, so...then you say, lets get them to play with kids their developmental age.  Hmmm,  there's an idea! seems simple enough...right? However, I find that unless you have nieces or nephews or friends with little kids its not that easy to say can my "pre-teen play" with your kindergartner, the typical mom of a 5 year old isn't going to get it.  Would they?

So here I am today. I myself shy, comfortable only with handful of friends (if that) and I have a child who struggles socially. I have done everything possible to come out of my comfort zone and get kids to come play with my son.  It may last one or two sessions and the kids just don't want to play anymore.

Thankfully, my husband is an out of the box thinker. So I'm posting this idea hoping this may help everyone else out there who struggles with same situations.

We are starting a Saturday play group, open house 2-5.  No pressure.  I came up with a list of names of "special needs" parents I have met through the years and we will be sending out an invite to all we know that are struggling with same issues.

So far everyone I have given a heads up to is just happy to hear its on a weekend, as weekdays are so hectic with work and therapies etc..and they seem happy to have "special needs parent time" too and a place were you don' t have to explain our child's behaviors. A place where your kids can just be kids and play even if they are parallel playing and doing their own thing.

I have a feeling once this gets off the ground some liquor may be involved down the road us parents.... ;-)

Will keep you posted on the outcome of this NEW group.

Friday, January 10, 2014

Special Needs and Puberty

Yes, its true even preemies grow up at some point.

I'm sure you have heard the phrase "its doesn't get easier it just gets different"...  Well that holds true in so many ways.

My son was and easy baby for the most part (minus his medical complications) as he grew he was pretty easy going, could take him anywhere, he wouldn't fuss.  Just a go with the flow type of kid.
Then Puberty hit.

 Here we are at 12 and it seems like he's gone backwards. I suddenly remembered a conversation with one of our favorite doctors.  A few years ago at an appointment when my biggest concern was attention and he said "wait until puberty, some kids regress".  I'm assuming this isn't for all kids but what do we do with the kids but it certainly seems like mine has...

My son is  irritable, fidgety, non-compliant and the list goes on. So you ask how is this different than any typical child going through puberty! Right?  Wrong.  This is so different, in so many ways.  Picture, the body changing but the mind?  Not to much.
He doesn't understand appropriate vs. non appropriate and why its NOT appropriate to do and/or say certain things.  He has no filters, says what he thinks (that is one of the qualities I love so much about him) but society?  Not so much.

Research suggests talking candidly about body changes and sex  or having your developmental specialist do this. However, I struggle with how much is too much information and will he take it to the next level?  With my sons OCD type of behaviors how do I know he won't obsess about it and would this lead to other behaviors?

Last season the show Parenthood tackled the subject of special needs and puberty. Autism Speaks came up with a few helpful resources.

I found some of these suggestions helpful and also have explored the following books.

Whats happening to Tom
Whats Happening to Ellie
A Survival Guide for Kids with Autism

These are just a few I have been exploring.  Any other recommendations that you may have please comment below...

As always any story's to share, advice or venting is welcome to comment below or on Facebook.