Showing posts with label ASD. Show all posts
Showing posts with label ASD. Show all posts

Thursday, January 1, 2015

What worked for us: Christmas 2014

More and more I have been purposefully working to keep our life simple and meaningful.  Our Christmas activities were not exempt.  Here are some of the special things we did this year that worked for us.


Christmas Day
  1. Truth in Tinsel - We love this preschool friendly Advent devotional for families.  This is the second year we have used it.  All three kids participated and colored ornaments related to each days part of the Christmas story. 3 kids X 24 daily crafts= a lot of ornaments to display.  This year we painted a tree on newsprint to "hang" our daily ornaments on.  The kids liked adding out our tree each day and it helped with our theme of preparation for Christmas. 
  2. We bought a live tree - This year we finally did it.  It wasn't like our childhoods but we did it.  We had a full size and live tree.  Both of us remember going and cutting down the Christmas tree on family land.  This year we went to a tent where we could choose a cut tree from North Carolina that had a color coded label for the size.  But none the less it was a live tree.  
  3. Homemade ornaments - I picked up 2 sets of ornament craft kits and some glitter glue and we started working.  It was a fun way to ease into the holiday season and build anticipation for decorating the tree.  We had foam ornaments and wooden popsicle sticks and it pretty well filled the tree.  We also made some salt dough ornaments to go with our Truth in Tinsel crafts as well.  
  4. Nathaniel's Toy Shop - Nathaniel's Hope is an awesome ministry based here in Orlando.  They encourage and support families with VIP (special needs) kids.  One of their projects is a toy giveaway program for VIP families.  We not only got to shop for a few toys for our kids but also got to see Santa and were visited by R2-D2 and some sweet therapy dogs while we were waiting.  
  5. Making and giving fudge - I have so many great memories of my Grandma.  the strongest of which usually involve food or smells.  Every year she would make fudge for the holidays.  My mom says it the best recipe ever, she may be a little bias.  As a kid we would make fudge in addition to cookies to give to the neighbors and enjoy ourselves.  I have kept the tradition.  What makes it easy is, the recipe makes 5 pounds of fudge so there is more than enough to give way and keep for yourself.  It gives us a simple way to give a gift to others who have been a part of our lives over the previous year.  This year that included teachers, therapists, co-workers friends and neighbors
  6. Not making cookies - This year a choice we made with doing what was meaningful.  Cookies didn't happen.  Not until the Grandparents came to visit and even then it was Christmas eve and we only made 3 simple recipes.  Grandpa's must have Spritz, Molasses for Bob, and Rice Crispy treats for the kids.  
    Reading one of our presents
  7. Opening a few Gifts Early - We let the kids open a few gifts early one each on the 2 days leading up to Christmas.  It fit with our advent study, and they asked so nicely ;-)  This helped alleviate the anxiety and anticipation of opening everything on Christmas morning.  Unwrapping gifts can be a source of meltdowns for ASD kids and this helped at our house.  It gave them something special to play with while the adults were doing the last minute preparations.  
  8. Opening our Gifts as we unwrapped them - We decided that we would allow the kids to unpackage each gift as they opened it and open the next one when they were ready.  This was great fun to really enjoy each gift as it was discovered and let to a slower start to our morning.  We also could keep the wrapping picked up by opening presents at a slower pace.  In the end we did end up with some rapid fire opening but everything was enjoyed and not forgotten.   


Monday, October 13, 2014

Caleb's Education miracle

Last fall (2013) I took Caleb through all the steps to look for early intervention help.  Starting at age 3 this help is through the local school district.  Caleb was accessed and evaluated, and the resulting conclusions were that he (didn't qualify for any services at this time), I translated that based on the exact test results to mean, because he is a bright child and knows more than he should for a 3 year old, we don't see that his quirks/disabilities are impeding him educationally.  "Educationally necessary" being the basis for services starting at age 3.  We look this paperwork and moved on, knowing that it didn't describe our child.  He wasn't being tested in a way that showed his weaknesses.  

As we began to sort out his education options for Pre-Kindergarden we began to hit a brick wall.  He wasn't potty training, and we had paperwork that said he wasn't in need of special services.  Although the diagnosis that make our boy special would explain the lack of traditional potty training.  So we started to fight again.  

We could not find an special preK program that would accept him because we didn't have the paperwork in fact the paperwork we did have said the opposite of what we needed.  And every program we inquired with, required fully potty training.  The staff were not authorize to assist the student in the event of an accident.  We were stuck.  

With a helpful visit from grandma for moral support we "boot camp" potty trained so he could attend one of the public school programs, and began looking for more solutions.  At this point we have 3 medical diagnosis including the Autism Spectrum, he is receiving 4 hours of week of therapies.  But according to one piece of paper he doesn't need special help to succeed in the classroom.  

We started the process for the second time to be evaluated by the school system.  This time we had 2 people observe him in his classroom as well as a clinical observation.  The reports continued to not show the full picture of what we know to be our Caleb.  It did give us some markers to indeed confirm he is gifted and some of his scores were the highest the evaluator had seen.  One new area of data was collected this time and it ended up being key, Pragmatics.  

As I received the reports from the evaluators, I began to worry if he would be recognized for what he needed.  We had 2 experts helping us through the process and interpret the results.  They weren't offering anything encouraging either based on the reports.  We continued to pray and share where we were.  

Due to circumstances I had to attend the final meeting by myself.  We had originally planned for Bob and a friend/expert to attend with me assist in the process.  I was nervous about the weight the meeting held but I had that strange Godly peace.  I reviewed my notes and concerns before the meeting ready to stand up for my son and what we felt his needs were.  

Soon after the meeting started I snuck a glance at the staffing specialist's notes and saw the favorable mark that said "he qualifies for services" at this point I relaxed and held my breath for what that meant and what services they were going to find he needed.  

The way we saw it he had 3 choices for services.  
1.  No services like he has been found in the past.  This was not preferable and this time we were prepared but not excited about fighting if this was the result.  
2.  "A 504 plan" this recognizes he needs assistance and adaptations are made within a traditional classroom.  He can walk around extra, extra time for tests, social seating, etc.  We had begun to put a few things in place since the first week of school with mixed results, some of his triggers could not be   altered.  
3.  An "IEP" Individual Education Plan.  This would require him to be moved to a classroom with accommodations to meet his needs.  The staff would be trained to specifically help him.  He would have therapy and assistance available to him all the time to complete his tasks.  This paperwork is the standard we were missing to qualify for any specialized education opportunities.  

Our first choice was #3 where he could receive the greatest amount of intervention and assistance so he will continue to thrive and as he gets older hopefully need less or no services.  Early Intervention is key.  Th feedback we got was that this was a dream and he wasn't really needing this much help at this time.  We were even told "he may qualify for a 504 in a couple of years," meaning that he wouldn't test special for a few years.  He needed to fail more first before they would help him.  

We settled on an open mind and hoping for at least #2 with #1 not being an option as we saw how it hurt his options moving forwards.  Ultimately we had no idea how it was going to work out and what the recommendations would be.  We also knew our rights as parents of a child with disabilities, we could refuse to accept their suggestions and take it further.  

When all was said an done.  They did find Caleb qualifying for services, and his goals and objectives were exactly what us as his parents felt he needed.  TO sum it up one of our expert helpers summed it up this way, "WOW!  I have to say I am shocked and happy!!  That is really great."  When an expert in special needs who has helped many families through this process is shocked, you know you did something right!

All we can say is Praise God and its answered prayers for our extra special, out of box boy.  To be recognized by the school district that he will not fit into the mold they have given him.  Disability may be an umbrella term that he falls under but his wired differently not less by any means.  

Friday, August 29, 2014

Starting School: week 2

Caleb started school this week.  He goes 3 hours everyday to a mainstream PreK program.  He has had mostly good days this week and is still learning the routine.  He bravely leaves his blanket behind when he goes to school.  He knows it better be waiting for him in his carseat at pick up time.  His teacher told us he is very bright.  It is a good encouragement to know the teacher sees it when he is also having behavior issues and can be a handful in the classroom.  His school is a short drive from home and on our daily driving routes so he gets to see it often.

When you see him he will tell you he doesn't go to Preschool, he goes to PreK!  He is very proud.

Friday, August 22, 2014

A Birthday to Celebrate

Caleb turns 4 this year, and he is getting his first party.  Its a reason to celebrate for our whole family. He has grown so much in the last year.  This time last year we started walking down a dark tunnel with no idea where we would end up.  All we knew is he wasn't acting typical for an almost 3 year old.  Nothing huge but lots of little things that added up to concern.

  • He didn't ever seek out a playmate at the park
  • He hadn't mastered the open cup
  • He needed a bib for meal time.  
  • He had an abnormal gait to his running
  • He was uninterested in coloring
  • He didn't seem interested in becoming independent.  
  • He would answer our questions in unrelated quotes from his favorite movies.

At his birthday party he just stared at
his presents, he needed help to open them.

We started inquiring with the doctor who sent us to specialists and therapists.  And we began dragging Caleb all around town to see different people to help us understand where he should be and why he was behind.  He saw a neurologist, Behavior Specialist, Developmental Pediatrician, Occupational Therapists, Speech Therapists and the most recent has been Behavior Therapist.  

We wanted to find the "labels" that fit him so we could push past them and know what we were dealing with.  Initially he was given 2 labels that were both new to us.  Hypotonia, also known as low muscle tone or "floppy baby syndrome".  The second label was Sensory Processing Disorder, the information gained by our senses is not processed correctly and cause problems doing the otherwise routine activities.  Sounds may feel louder than they are, or an itchy tag on a shirt may feel like a horrid rash.  As a young child is learning about the world around them and developing basic skills these can cause fundamental problems.  So we began the prescribed regiment of Occupational Therapy and Speech Therapy for Oral Motor skills.

Later after seeing more specialists and getting a second opinion, Caleb was given 2 more labels.  ADHD, and Autism Spectrum Disorder: Aspergers.  Due to recent classification changes Aspergers is now under the umbrella of Autism Spectrum Disorder, it is not a separate diagnosis.  I have seen attributes of ASD in Caleb for awhile and was relieved to get it on paper.  We added Behavioral Therapy to our weekly routine and began looking at school options for our extra special, and exceptional boy.  

Autism is a neurological disorder. It's not caused by bad parenting. It's caused by, you know, abnormal development in the brain. The emotional circuits in the brain are abnormal. And there also are differences in the white matter, which is the brain's computer cables that hook up the different brain departments.  -Temple Grandin


He is still Caleb, he is our Caleb. 
Now we have the tools to help him achieve all that he can. 


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