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.

Wednesday, August 27, 2014

Starting School: week 1

Last week our little girl started school, the big scary elementary school in our neighborhood.  After the 2nd day she didn't find it be big and scary and confidently walked in all by herself and has every day since.  Tuesday she learned a bit of the dark side of school.  A couple boys in her class caused the whole class to loose recess in addition to no one talking to her at lunch.  It was a tough day for my social butterfly. But she was ready to go back on Wednesday.  She has 2 kids from our neighborhood in her class and she is making fast friends with them both.  Friday she was hardly home after school between a playdate with her new classmate, and another neighborhood friend. 

Monday, August 25, 2014

Minion Mayhem to Celebrate #4

Here are some of the pictures from Caleb's party.  Caleb and Lydia both helped mix the brightly colored batter for his cupcakes.  Each made one of the colors.  They were very proud of their yummy creations.

It was a joy to watch Caleb enjoy his party.  When he was opening his presents it hit me, how he did last year doing the same thing.  This year he knew what to do and didn't need any help.  Although his sister offered to help since he wasn't unwrapping them at lightening speed.


He didn't mind being the center of attention during the presents and was able to stay focused on his task.  He loved his party with "jelly guns" water play,and jumping on our new trampoline.


At bedtime he whispered in my ear, "I will be 5 and then 6 and then I want a Handy Manny party."  I thick we can call it a success.  A special day for a special boy.

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. 


Saturday, August 16, 2014

Emerging from the Chaos

This space has been quiet for too long.  Life has been overwhelming for too long.  That last baby threw our family in to chaos for much longer than we expected.  We have learned some new medical jargon and added things to our life along the way. We have found our new normals and dare I say we have survived!

Our baby is not a baby any longer.  He is has been walking for months now.  He gave up the highchair this month at the same time big brother gave up diapers.  Now he sits at the table with everyone else and demands to eat exactly what everyone else is eating.  His food allergies can make this a challenge sometimes.  At his 18 month well check up we got some exciting news we have been waiting to hear for a year.  Andrew finally made a positive jump on the weight charts and he is finally back on the charts.  Thanks to special formula, enzyme replacements, a milk and soy free diet.  This mama's tears where not in vain.  Our boy is growing strong at 22 lbs (19 months)

We had spaghetti this week and there would be no denying Andrew what was on everyone else's plate so he was stripped down to his diaper, and dug in.  He ate a plate full.  And of course a bath was waiting for him afterwards.  

Coming up in the next week, Kindergarden, birthday party, soccer, and a new family schedule.  

Sunday, January 26, 2014

The mother they need, not that I want to be.

http://supportforspecialneeds.com
Last year we added our third child to the family and I had a plan on how life would go.  Preschool at home with my two budding geniuses, who were eager to learn, with field trips to the science center, and story-time at the library.  Baby in my lap with brother and sister siting next to me listening well and participating.  This isn't my last year.

The first few months were spent surviving at home with a baby who when awake was screaming, and my other two kids pacified by PBSkids.  11 months later we learn that the baby has milk and soy allergies, and pancreas enzyme deficiency that is causing him to not gain weight.  5 months in to the screaming baby, we start noticing the soon to be 3 year old, still won't still still to color, is uninterested in dressing himself, and still needs a bib for any messy meal.  2 pediatricians later and 3 specialists he is diagnosed with developmental delays, sensory processing disorder and low muscle tone.  He begins 2x week occupational therapy, that i have to sit in the waiting room while he completes.  Leaving little time and no energy for mom to do any organized teaching at home.  Each specialist would tell us, take away his favorite toys, less time on the iPad, he'll grow out of it, do this...  And between my boys' appointments my 4 year old started pre-K which was equally draining with the short school day and drop-offs and pick ups to schedule around.

My life is looking a little different now.  I"m homeschooling the now 5 year old because its too stressful to leave the house with all 3 kids on a schedule every day. The 3 year old still hasn't mastered a spoon, watches and repeats his favorite movie lines over and over, and jumps on the couch so much he got 2 trampolines for Christmas.  He still carries his blanket around and if you don't have it be ready for meltdown.  My baby is now a toddler and starting to do some things my 3 year old struggles with.

The 3, 5 year olds are less tan 2 years apart, I imagined homeschooling them mostly together at the same level, with small differences.  the 5 year old excitedly read her first (leveled reader) chapter book this month, and can do simple addition on her hands.  The 3 year old is still learning to hold a crayon and draw a line.

Its not the life I pictured but I feel a great responsibility to care for my boys and their special gifts.  I am a researcher and Google is my friend.  I was even asked at a meeting if I had an education background for the knowledge I appeared to have.  I will fight for my kids to succeed and get the help and tools they need.  I wasn't planning on this hard work but i'm willing and able.  
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