Friday, January 28, 2011

Thoughts from a Mom and Aunt of children with Special Needs

I know there are many out there that are in the same boat as I have found myself in for the past 16 years - being a parent or relative of a child with special needs. It is a life full of challenges, ups and downs, highs and lows but MOST of all - it is a life full of the blessing to look at things just a little different and being able to experience joy in so much!

I read a friend's blog this morning about her "Adoption Story" (awesome story Tina!) and it inspired me to share my "Special Needs" story because I know so many who are faced with these challenges day in and day out!

The story actually begins before Joel and I were married or even engaged. We had been dating almost a year. Joel's sister Jana was pregnant with twin girls - which I thought was SO cool - when he was contacted at college and told that something had happened and Jana was having an emergency c-section. The result - Brianna (one of the twins) had died and Bethany (the other twin) was in pretty serious condition. There are obviously more details to this event but the end result was that our neice Bethany was born with Cerebral Palsy and was Mild Mental Retardation. I have to be honest - at this point I was concerned for Jana and Jeff and their whole family but since I wasn't technically in their family - it was hard to relate.

However - just a few short months after her birth, I had the privilege and honor to meet sweet Bethany Shae and she has literally captured my heart from the moment I first held her! There are no words to describe what she means to me and how she has changed and impacted my life personally. Bethany has had to go through numerous surgeries, doctor's visits, therapies, etc and she is still full of childhood joy and laughter! Her sweet smile lights up the room - she loves her cousins - she thinks her Uncle Joel is silly (well don't we all?) - and she works hard to learn to do things independently for herself!

I know that I do not completely understand the day to day challenges my sister-in-law and her husband face - however I have seen how much perseverance they have, the dedication, the ups and the downs. Most of all, I have seen the way they daily have to trust the Lord with Bethany and look to Him for guidance! I know I speak for ALL of our family - we are so blessed by Bethany and we are so thankful that she is a part of our lives!

Yet, my experience and story doesn't end with Bethany. Shortly after getting married - Joel and I had the opportunity to work at Special Friends Camp which was a Christian camp for those with Special Needs. It was here that my heart was FOREVER captured for those children and individuals with Special Needs. I can't describe the joy that they have brought me and how much I truly value spending time with them.

I now know that all of the above experiences were God's way of preparing me for a special little boy - Tyler Bay Arrington. Tyler is not "typical" special needs as he doesn't have an exact diagnosis or even a "major" issue. Yet - he has faced challenges since the day he was born. At Tyler's 2 week check-up he had not regained his birth weight - being my fourth child I KNEW this wasn't the norm and that there was something just not right. Our family doctor agreed and sent us to a pediatrician in Durango. Thus began a LONG 10 months of weekly appointments, changes in formula, tests, etc. The peak of this time was Thanksgiving 2001 - our Dr called us while we were on vacation (yes, he was THAT dedicated) and told us that when we got back to Pagosa we were to make IMMEDIATE plans to go to Children's Hospital in Denver. After talking with numerous specialists - they all agreed - that Tyler had Cystic Fibrosis and that he was one of the few in America who had a False Negative test at birth. He had ALL the signs. Thank you Jesus for a church family and community who KNEW how to get on their knees in prayer. To this day - I have no idea how the word spread so quickly but the Pagosa community was doing battle in prayer on behalf of our little boy!

When we arrived in Denver - after a LONG stressful drive over snowy passes - we were on pins and needles not knowing what the outcome would be. The following morning was long with waiting rooms, tests, waiting for results, etc - the outcome? NEGATIVE! Tyler did not have Cystic Fibrosis...I will say here that is my belief that he truly did have it but that the prayers of many availed much and he was healed. In some ways this was the end to a long journey physically as Tyler then began to gain physical strength but it was also the beginning of a journey that would show us some other issues physically and eduactionally that Tyler would face.
From birth, Tyler suffered from chronic ear infections and illness. As a result, he was on multiple antibiotics the majority of the first 18 months of his life. He had tubes put in twice and was a "regular" at the Dr. He also suffered from random high fevers frequently and on numerous occasions lost the ability to walk at very random times.

At age 3, Tyler could barely communicate verbally, had trouble with social interaction, and was just to the point we could work on potty training. By the time he was 4 - we knew that he had other factors affecting him but were unsure what they were. It was at this time, that he was officially diagnosed with moderate to severe hearing loss in both ears and would require hearing aides for life. The best way to describe it was that when he heard people it was as though he was hearing things underwater. Although taken off guard since we didn't know ANYTHING about dealing with a child with hearing loss - we were also excited to think that once he got hearing aides he would begin making progress.

Children's Hospital in Little Rock Ar. was AMAZING! They worked with not only Tyler but us as parents in how to help him and work with him. With their help, we were able to not only get Tyler hearing aides but an FM system that would enhance his ability to understand a specific speaker.

Unfortunately, this was not the end of the problems that Tyler would face. Having lived literally in his own world for the first 4 years of his life - he did not know how to interact socially with other children nor did he know how to respond to instruction in terms of us as parents or his teachers. The result of this was many outbursts of anger, frustration on his part and ours, destroying his preschool classroom, melt downs on a regular basis, etc.

Through the help and encouragement of many Godly people in our lives - we were able to help Tyler work through a lot of these struggles and learn to cope in a better way. Tyler still has a hard time interacting with other kids but is making progress daily - he struggles in school and is about a year and half behind his grade level. Daily it is challenging to get him to stay on any one task and to sit still. He struggles with memorization and reading. Physically - he appears to be much stronger as we no longer have high fevers - at least for the past year - he has adapted and learned to rely on his hearing aides but we are also looking at the possibility of future surgery on his mouth and nose to correct some speech issues. Tyler also still struggles with controlling his emotions but is getting better.

I am thankful that God in His infinite wisdom has placed us in the Bayfield School District during this time in Tyler's life. I can not say enough good about the Special Education teachers and the staff at San Juan Board of Cooperative Education Services (BOCES) who have helped us in so many ways and have worked endlessly with Tyler. They are amazing!!! They are wonderful in not only informing us about Tyler's progress and their plans with him - they include us in the decisions, etc. (Ok - enough of a commercial there!)

Tyler is definitely our most challenging child in the realm of Special Needs but we do have 2 other children that have Special Needs as well. Kestra has a learning disability that causes her to struggle with learning and comprehending - but she is also getting to the point where she can overcome it and work with it! Malachi - our oldest son - has a hearing loss as well and although it was diagnosed later than Tyler's it is at the moderate level. He has not had the other challenges that Tyler has had though and has grown and developed normally.

All of this to say - even though it is hard, even though there are days that I want to throw up my hands and scream, even though there are many appointments with doctors - I wouldn't change a single moment! It has been so wonderful to work with not only my son and neice but others with special needs as well! My prayer is that if you are raising a child or know of a child with Special needs - you would be encouraged and know that it is not a walk you have to travel alone. If you haven't had any contact or interaction with people with special needs - my prayer is that you will reach out and get to know these wonderful people! I promise - it will change your life for the better!!!


In His Grip said...

Thanks for sharing your heart.

Anonymous said...

Hi Ronnie,
My name is Mimi Thurston and I have been Advocating in La Plata County for children with Special Needs for over a decade. I read your letter to the editor in today's paper and I congratulate you on your relationship with BOCES. Unfortunately, in my experience many Parents do not find the treatment of their children or themselves as appropriate by BOCES.
We are meeting in Bayfield next Sunday at 1:30pm and I invite you to come share your journey with us. I also invite you to sit in on one of our meetings scheduled throughout the month of Feb so you can see how others deal with BOCES and the Bayfield School District. We have been working for 6 months for a 17 year old and eligibility. Below grade level skills in reading, writing and Math. We have written one State Complaint and foresee writing 2 more before the end of the year. They do not let us participate, they do not care what our concerns are.
Once again I want to congratulate you on a positive working relationship with BOCES but in my experience you are the minority.
Your children are lucky to have you as their Mom.
Mimi Thurston

Kellie Paxton said...

Hi Ronnie,
My name is Kellie Paxton. It is my letter that you responded to in the Durango Herald. I applaud you for having such a great relationship with the District and SJBOCES. I too feel that you are within the minority of those of us with children with Specific Learning Disablities. I do not know which schools in Bayfield your children currently attend. I know that the elementary school has some wonderful, heartfelt individuals that help our kids. It has been my experience at the higher levels to find the treatment not only of parents but of the children to be discriminatory. No child, no matter what the disability should be sujected to such behavior within the schools that we expect to teach and protect our children while in their care. My son is Dyslexic and Dysgraphic currently on a Section 504 with the District finding him eligible for IEP in another area. I invite you to come attend my meetings and offer your expertise. Maybe you can give insight into why we can not have the same type of relationship you have with our educational institution. I also advocate for other children in Bayfield as well. These parents are frustrated that they can not participate in their childrens education plans. We have all at times been told that we can not have input. We all love our children, we want to be involved and want our children to receive the education that they are entitled to. I again invite you to join us February 20th 1:30 PM at the Lavenia McCoy Public Library. We are always open to new insight, ideas and expanding education.
Thank you for being an involved parent and we will keep you high in our prayers as we all travel this journey.
Kellie Paxton

Anonymous said...

Kellie and Mimi - Unfortunately I will be out of town on Feb 20. I would be happy to share our journey and how we deal with both BOCES and the District at a later meeting if my schedule allows. Thank you for your concern for those with Special needs.