8.24.2016

Our Special Ed Journey ...

As my brand has grown many people have asked how it all began.  I can't share this story without talking about our middle child and my journey.  I say my journey because I can only speak for myself in this process. I can only share my feelings, my fears and my worries along with the lessons I learned.  I have made it a priority to make sure anything I share is from my view since protecting his privacy in this is the most important piece.  I do however feel led to share and to share from a place of hoping I can help someone else on the same or similar journey.  There is a reason I was chosen to walk this path and I am hoping this post blesses someone along the way.



I started the blog in 2007 after a diagnosis for one of our children that required a lot of therapy for him in a short period of time, none of which was covered by insurance.  I owned a monogram business at the time and I started blogging for two reasons.  First I needed a place to showcase what I could do and second I needed a creative outlet for the crazy dark path we were walking.  But I am truly getting ahead of myself.

In late 2000 I found myself in an infertility journey.  Our first pregnancy had been quite easy and we wanted a second baby and after many many months of trying with no success I turned to my obstetrician for help.  He informed me of my incredibly low hormones issues and told me we could start medication to help the process along.  I was to begin medication the next month when my cycle came, but it never did.  Days passed and nothing. The doctor ordered some medication I could take to start the process but I was completely uneasy about taking it without first verifying I was not already pregnant.  The nurses chuckled saying there was no way someone with my levels could conceive but my heart needed to make sure.  I took the first test and almost passed out.  After five pregnancy tests I returned to the doctor's office jumping up and down and holding all five of my positive tests.  They immediately started me on hormones and other medicines so that I would be able to keep the pregnancy and give us the best chance for a healthy baby.  The nurses keep shaking their heads looking at my paperwork and my positive tests.  My doctor walked by, took it all in and simply said to me, "That my love was completely God".

I knew from an early moment that this pregnancy and this baby would be very different.  He was very hard to get and harder to keep.  At 13 weeks I became very ill and after a week I was hospitalized with an unknown infection.  Was the infection in the uterus or outside?  No one truly knew the answer.  To make sure they recommended an amnio.  If the infection was inside the uterus the baby would not make it and my chances for conception again would be gone.  If it was outside we took the risk of it spreading to the inside and then once again putting the baby at risk.   We decided to sleep on our decision.  We learned the sex of the baby and my husband chose his precious name.  In the morning we decided against the amnio and I spent the next two weeks trying to recover as they tried medication after medication until they finally found one to beat the infection. If we had chosen the amnio my baby most likely wouldn't be with us.  It was an incredibly hard decision but the best decision I may have ever made.

From the second he was born we instantly knew something was different.  The nurses whispered amongst themselves and immediately the doctor started making notes.  His whole body was swollen and he failed the hearing test and his Apgar test was very low.  Other than that he was happy and healthy and as sweet as he could be.  Not to mention beyond beautiful.  I could not have loved him more.  At two months old one of our doctors ordered genetic testing and we sat for weeks waiting to found out if our newborn had Downs Syndrome.  He had quite a few markers and the signs were there. I remember researching all I could to best prepare myself for whatever the outcome would be. I would be on top of it and he would be fine.  The test came back normal and we all relaxed and moved on.

As he grew he remained quiet, crying very little and was to me the most content baby on the planet. After a strong willed baby with colic I was pleased as punch to be given a calm and easy baby.  But after his first year the doctor noticed he was missing milestones and we were called in to discuss more genetic testing.  Test after test after test and we still had no answers.  They recommended we take him to Emory for a more extensive genetic workup and to the Marcus Institute.  I added our names to the wait lists, four years for one and more than three years for the other.  We started preschool when he was two and that failed miserably.  I thought it was the teacher and enrolled him a second year but after a few weeks it all came crumbling down.  It wasn't a teacher, my sweet and quiet child was silently struggling as he just didn't match up to the other children's abilities. He could not sit in a circle, could not scribble like his classmates and the loud noises in the indoor play area sent him completely over the edge.

My husband asked around and did his homework and found we could take him for testing in the public school system since he had just aged out of the Babies Can't Wait program in Georgia.  We made the appointment and took our very small child in for a head to toe evaluation.  Their findings blew us away and confirmed many things we suspected, our little fella was quite off.  With an Occupational Therapy delay of 18 months and a Sensory Processing Disorder diagnosis he was eligible to start public school immediately in the Special Needs Preschool (SNP) program. They would be able to give him all the assistance he needed to "catch up" and be close for "mainstreaming" (regular classroom with little or no assistance) as a kindergartner.  We were all in, although my mama heart struggled as I put him on the little bus strapped in a car seat with a book bag that drug the ground. I remember the first day he rode the bus.  I followed it all the way to school with my two month old baby strapped in the back.  I watched him climb down those big stairs and the tears fell down my cheeks a lot like they are streaming now as I recall those moments.  I went to Starbucks got the biggest Latte they sold and tried my darnedest to put on my big girl panties.  It wasn't about me, it was about what was best for my baby.  It was the best option for him and doing what was best made my fears and sadness seem insignificant.

Fast forward with two years of SNP behind him we were ready for kindergarten or we thought we were.  He wasn't quite ready for mainstream and so he started Special Needs Kindergarten in his new home school.  New school, new teacher and new larger bus.  He was used to school and loved the structure and so off he went without any question.  He learned to draw shapes and learned to write his name and seemed to progress well, but he was still missing many milestones.  He could not read and his handwriting was a mess and a half. At the end of the school year his teacher recommended we mainstream him part time in first grade.  I remember thinking how can he progress when they are so many things he can't do.  She looked me square in the eye and said something I will never forget.  "At some point you will need to come to grips with the fact that there are some things he simply can't do. He simply isn't like the other children"  She was willing to push him through without all of the skills he needed.  She was also trying to box him in and that would never happen to any child of mine.

I immediately made an appointment with an outside Occupational Therapist for testing.  I remember asking for the Star Trek test.  You know, the wand they wave and they immediately know all of what is going on, that is what I wanted for him.  After less than 50 minutes with him she told me many things.  Yes, he still had a major OT delay, he also had a PT delay, a speech delay, low muscle tone and he could not see or hear well out of either ear. I made a battery of appointments and we chose to repeat kindergarten in a modified mainstream plan.  One of the things she said to me truly made all the difference in the success he has today.  We had to intervene quickly as most of his learning issues would be set in "stone" by age 8.  He was not quite six and we had basically two years to make a lot of magic happen.  He would go to school and then leave early to make his afternoon therapy appointments three days a week for 24 months.  It was expensive and none of it was covered by insurance.  It was a huge investment for our family and his life but we weren't willing to not make it happen.  It was 2007 and the blog began.

Fast forward another two years and we finally got the call that our appointment was available at the Emory genetics center.  I truly felt like I was carrying a load of bricks as I walked in that day with my husband and nearly 8 year old boy.  We knew all he was struggling with and had made major improvements, but we still didn't know why.  The why always left the possibility that health issues would arise and we wouldn't know how to proceed.  We needed answers. Many vials of blood from all three of us along with many questionnaires and we left feeling overwhelmed and uncertain of the future.  I recall stopping at Ikea on the way home and my sweet boy asking for a hot dog and an ice cream cone.  I remember thinking we had just had lunch and it seemed excessive.  He looked at me with his big hazel eyes and said "That was a lot of blood I just gave, I think I earned at least the ice cream cone."  He got both the hot dog and the ice cream!
  
Three weeks later and we finally, after many years, had a diagnosis.  My child has a rare genetic disorder that at the time was only documented in one other case in the world.  His 22nd chromosome is duplicated in the middle upper section.  Had it been further up or further down he would not have been a viable pregnancy.  Neither my husband nor I am a carrier so it is unclear whether he will pass it on to a child of his own.  Further more, the gamma ray they use to view the DNA had recently been expanded to view this type of duplication.  The timing of the visit and the test was crucial.  Had we visited even six months before we wouldn't have had the answer we had long awaited.  Timing is truly everything and this timing was perfect.  We then scheduled scan after scan with many specialists checking out his heart, kidneys, eyes and brain and now have a complete picture of all the health issues that may arise as he ages.

What they were able to tell us what extremely helpful.  They confirmed his learning issues and the Sensory Processing Disorder.  They identified a number of physical characteristics that truly felt like they were describing my baby to a T.  They confirmed his low muscle tone and some issues that may arise as he ages.  They gave us the best pieces of information for us and the school system so that he could finally get all the help he needed to make the path as easy for him as it could be.

My son is now 15 and just started his first year of high school.  He is mainstream with modifications and for the most part is an average teenager.  He struggles in many areas but has learned to control most of them and we have learned to help him navigate most of the rest.  He is the kindest child I have ever met with the largest smile on the planet.  He is charming and engaging and his IQ is higher than any of the rest of us in the family. He is gifted in so many areas and these seem to smooth over the areas of struggle.  He is funny and kind and has a gift for creative writing and music.  He is one of the best gifts I have ever been given and one I thank God for daily.

The truly life changing moments happened each time a teacher fell in love with him and devoted herself to his care.  We had an amazing team at the first school who loved him and worked with him beyond their job descriptions.  In the second school we truly had so many people who were committed to his success.  Many special ed teachers and the administration who were committed to him being the best he could be and doing any and everything they could to make sure he had every opportunity for success. Each of them had a piece in truly changing his life and mine.  Many times I would show up in tears and it would be my neck they would hug.  I would have driven carpool in my pajamas and then had to carry him into school wearing them.  No one said anything other than "those are cuter than last weeks" and we all had a laugh.  Many of them taught me how to be his parent and taught me patience and kindness and unending love when all I wanted to do was label myself as a failure and hide in a hole with my very small and precious child protected.  Not only did they change his life but they changed mine.

I am not writing this post for anything other than to be an inspiration and a hope to anyone dealing with special needs issues.  It can be an incredibly hard path with many ups and downs.  When I first started my path there was no manual, no guide book and no one I knew who could help me. At times I found myself very scared and unsure of the life he would have or what I would do to help him reach his full potential.  You have these tiny pieces of your heart walking around and all you wish to do is protect them for anything coming their way.  Any issues that arise that they struggle with only makes those wishes, dreams and fears so much deeper.

I am very open with my journey in hopes it will help anyone who hears it and that others will reach out for any advice I may have.  I hope I can one day lift someone up and change their life as many have done for me.  That will be the greatest gift of this journey.

Well, that and watching my sweet boy graduate from college to become the history teacher he dreams to be.  

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