early childhood intervention

Resources

Hi There!

A post regarding resources seems really overwhelming! Where do I start? Should I focus on a certain need? Will I offend anyone?

Well, I am still not sure if I have the right answers to those questions, but I think it is better to start somewhere than not at all. Here are a few links to resources that I have found to be helpful or that I think may help others.

We primarily live in the Arkansas River Valley, but for the first two years of Grey’s life we lived in North Texas (an hour from Dallas). You will see many of the resources listed are specific to the areas we have lived.

I am certain there are more resources than I have listed here. Please contact me if you have a recommendation or a story to share that may inspire, comfort or help others!

ARKANSAS

Arkansas Medicaid Saves Lives

Bost, Inc.

Arc of the River Valley

Gregory Kistler Center

Sunshine School of NWA

Stepping Stone School for Exceptional Children

Arkansas Medicaid – TEFRA 134(a)- allows Medicaid to be extended to certain disabled children

TEXAS

Early Childhood Intervention Services – Where we started. ECI connected us to therapy services at home. Had we stayed in Texas, they would have helped us transition from at home therapy to additional services.

The Ashford Rise School of Dallas – If we still lived in North Texas, this is probably where I would have tried to enroll Grey.

Cook Children’s Pediatric Neurology

Additional Resources

Best Buddies International

Disability Rights Laws

CDC. Learn the Signs. Act Early.

Autism Speaks

Special Olympics

https://health.usnews.com/best-hospitals/pediatric-rankings/neurology-and-neurosurgery

Disclaimer: CAMP GREY is not associated/affiliated with any of these resources. Engage at your own risk.

A Diagnosis – The Light in Scary Words

It’s not like I wanted my son to have a label that meant he really had a disability. I didn’t want my son to have any struggles. I wanted him to be healthy, strong, and independent. I wanted to read Babycenter with enthusiasm and get excited every week as I watched him meet the recommended milestones I had read about. I didn’t want to know the names of specialists and I certainly didn’t want a diagnosis for him, until I did. Until I felt like he really needed one.

Grey’s second pediatric neurologist finally ordered an MRI for him when he was three years old after me asking for answers for two and half years. (As I have mentioned in other posts, we proactively engaged Grey in early childhood intervention/physical therapy when he was six months old). The MRI showed Grey had a brain injury on the right side effecting white matter. I was told that the brain injury was insignificant and that the type of injury he had wasn’t correlated to a particular diagnosis. Hmmm… pretty sure any brain injury is significant. To me, it certainly was. It was the reason why my baby could barely use his hands, talk, and move…. and so on and so on.

The news of the brain injury was sad to hear. But, I already knew something was wrong and I was relieved to finally have a better understanding of what was going on with my Grey, as bad as that sounds. What was worse than finding out that Grey had a brain injury was still having a question mark as to what to do to help him. “Keep doing what you are doing” was all I got. That didn’t seem like enough to me. Even more frustrating was when I told Grey’s pediatrician (the one we have to use for insurance purposes) that he had a brain injury and I wanted a referral to a different pediatric neurologist who specializes in working with children with brain injuries, she told me that she felt it was more appropriate to refer him to a geneticist. Do genetics cause a brain injury? I reminded her that he already had genetic testing completed at Children’s of Dallas and the results showed no issues. Terribly, terribly frustrating.

So, I went back to Grey’s Texas pediatrician after finding a pediatric neurologist at Cook Children’s Hospital that I felt would be a good fit for Grey. Thankfully, the referral was made and accepted.

Grey loved the waiting area at Cook Children’s. He did not want to leave!

On February 13, 2018, my son was assessed by a doctor who took the time to actually observe him do functional activities – like run down the hallway, climb on a chair, step down from a stool, talk, high five, eat, etc. Dr. Jeffery McGlothlin listened. For the first time ever, I felt like a specialist didn’t look at my son with “it could be worse… I don’t have time for you… just go home”. He asked to review Grey’s MRI and then he said “your son has cerebral palsy”. He told us that it was mild and that considering Grey’s brain injury, he was doing remarkably well. He told me it was evident that we had gotten Grey help. He went through treatment options. He listened. He waited. He watched. And for once, I was speechless. So many emotions came over me, but I looked at my little boy and thought, “It is going to get better. We can do more for you now.” The clinical diagnosis now attached to my boy meant we knew which road to go on, per se, and though it was scary, I found hope and relief in knowing the right direction to turn. Having a diagnosis not only helps to define more appropriate interventions, but it also helps Grey receive services he truly needs in school and life to reach his maximum potential. Dr. McGlothlin, assured me that Grey would have access to resources he needs much easier after that day.

Cerebral palsy refers to a group of neurological disorders that appear in infancy or early childhood and permanently affect body movement and muscle coordination. Cerebral palsy (CP) is caused by damage to or abnormalities inside the developing brain that disrupt the brain’s ability to control movement and maintain posture and balance, according to the National Institute of Neurological Disorders and Stroke. The term cerebral refers to the brain; palsy refers to the loss or impairment of motor function. Cerebral palsy is very complex and can affect individuals differently. There are several different types of cerebral palsy. I still have so much to learn about CP.

I cried the most bittersweet tears on diagnosis day. When I called my husband to tell him about the interaction, it was almost as if we were talking about completing a marathon that I had started to feel was impossible to finish. I know that might sound very strange, but after asking for my son’s delays to be seriously observed and researching, wondering, worrying, and feeling absolutely frustrated for over four years, I felt immense gratitude when we were finally heard.

For any person reading this who is sharing similar struggles, I encourage you to not give up. Fight. Fight. Fight. Most caregivers are not doctors and we aren’t equipped to understand the clinical significance, reasons, or whys regarding the struggles our kiddos have, but we do have the opportunity to play one of the most important roles our children will ever need – advocate. No one knows a child like their caregivers. A doctor simply doesn’t have the time to see and observe all we do. It is our job to speak up, however that may be.

My baby is John Greyson Keese…. Greyson, Grey, Grey Grey, tiny tyrant (ha!), brother, silly goose, buddy – our ornery, precious, adorable boy. He is not cerebral palsy. He is affected by it. He is perfect to me.

With Love,

Sara

Source: https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Hope-Through-Research/Cerebral-Palsy-Hope-Through-Research

Stepping Stone School for Exceptional Children: A Model for Success, A Miracle for Our Family

I am very excited to write about our experience with Stepping Stone School for Exceptional Children, or Stepping Stone, as we call it. I realize “miracle” is a strong word, but Stepping Stone has helped our Grey reach milestones that two years ago seemed so far away. After spending days upon days researching for the best possible solutions for Grey in three states and after seeing the incredible progress my child has made while going to school at Stepping Stone, I am extremely grateful and amazed by this school. Stepping Stone School delivers care and instruction to children who have developmental disabilities, preparing those children to be successful once they enter traditional K-12 learning environments. The 54,000 s.f. facility provides a safe, secure, and stimulating setting for students, and state-of-the-art spaces for teachers and staff, per C.R. Crawford Construction, who built Stepping Stone. To learn more about Stepping Stone and the many services it provides and the people whose lives it impacts, please click here.

OUR STORY

I will start with our story and what led us to this life changing place. I grew up in Ozark, Arkansas, about 20 minutes east of Alma, Arkansas where Stepping Stone is located. I moved to the Texoma area in 2007 for my dream job. That’s where my family and I were living when another incredible job opportunity was proposed to me in 2015. I was working full-time and in graduate school and feeling like I had chosen the wrong growth path. I was not in a good place. I was very ready for a change. The problem was this would be a huge change, as the job opportunity was located in Fort Smith, Arkansas, just a few miles from Alma and three hours from where our home in Texas is. Out of curiosity and a strong internal push, I told my sister about the job option and she then informed me of Stepping Stone. I never knew Stepping Stone existed before that conversation. Once my husband and I toured Stepping Stone and learned about the opportunities Grey would have to learn and grow there, we knew a move was in our future. I believe that all of this was not happenstance, but divine intervention. We left our meeting with Stepping Stone feeling incredibly grateful and full of hope. Lots of happy, overwhelmed tears were shed. There was no turning back.

Grey went from receiving services at home to receiving a holistic, individual education and therapy plan. He started going to Stepping Stone in January 2015. He was 28 months old. Unlike most two year old children, he could not run, jump, climb, say more than a handful of words (and never consistently), or show affection through using movement (i.e. hugs and kisses). He didn’t play with other children, not even his sister. He struggled feeding himself, as his hands were almost always clenched. At that time, we didn’t have any idea why he was experiencing these delays because our doctors kept telling us not to worry so much. By this time we had already had Grey evaluated by two different neurologists, an endocrinologist, and a geneticist. We kind of felt like we were playing a game of what seemed similar to musical chairs for a diagnosis.

Fast forward to today and our Grey can run, climb up and down stairs, talk in sentences (though we still don’t always understand him), give the best hugs and kisses, show empathy, feed himself and is getting closer to being able to dress himself. Grey is a hundred times more independent than he was two years ago. I attribute Grey reaching all of those milestones to the services he received from Early Childhood Intervention and Stepping Stone and to David and I being determined to be Greyson’s advocates.

There is a lot of work that goes on at home too. I know that may sound like a really silly thing to say, as it is so obvious and I am sure that those of you who have kids with special needs are shaking your heads or saying “oh, yes!”. The struggle is real…We have worked with a wonderful group of specialists from ECI and Stepping Stone who have taught us things we can do at home to empower Grey to be more independent and retrain his brain. I am always grateful for little reminders from those folks to do what I can to help Grey at home too.

A COMPREHENSIVE SOLUTION

Stepping Stone is a well-organized and incredibly structured, miraculous beacon of hope. I mean, look at the preschool building (Stepping Stone provides services to individuals beyond preschool, as well). It’s stunning on the outside, but the magic is of course on the inside. There is a special room for PT services, with all kinds of interactive tools and devices. The playground has special flooring and equipment that makes it possible for kids with various disabilities to play safely and have fun. There is a safe, secure drop off area. Each classroom has space for play, eating, and learning. There is a large onsite cafeteria where healthy meals are prepared onsite for the children to have breakfast and lunch at the school. The school hosts special programs throughout the year to give students an opportunity to shine.

The leadership and mission as Stepping Stone lends itself to an incredible environment for the students. Every morning Grey is greeted by several individuals and often with kisses and hugs. Mrs. Gail, the gatekeeper, always greets us with a warm hello and she somehow seems to know every child’s name. There are usually two to three aids and one teacher in every classroom. Grey has two aids, one teacher and 10 children in his room. I think he had about 16 children in his class last year. I feel that each day I leave Grey at Stepping Stone, he’s in the best place that he could possibly be to learn and grow. I know he will get the services he needs with love and compassion.

Having every service Grey needs available to him under one roof makes it possible for me to still work and help provide for my family. When we were living in Texas, in order for Grey to receive therapy services, I left work for two to three hours at a time on several days a week to take him to therapy services at our home. I had a phenomenal boss and employer who let me make up my work after standard business hours. The most frustrating part of the situation was that even after all the hustle and bustle, Grey still wasn’t getting everything he needed because his daycare was not designed to cater to children with special needs. Nothing in that area was or is available to give Grey what he really needed.

Besides offering education and one-on-one therapy services onsite under one roof, which is extremely rare, Stepping Stone is also different in how it is primarily funded.

MEDICAID AND TEFRA – WHAT AND WHY

Stepping Stone is funded mostly through funds from TEFRA 134(a), which is a Medicaid plan option, private donation and the United Way. TEFRA 134(a) is a look-alike TEFRA option. Eligibility to receive Medicaid via TEFRA 134(a) is solely determined by the child’s need and cost is determined by the parent’s or caregiver’s income. To read more about TEFRA click here. To read more about TEFRA in Arkansas click here. This type of funding makes getting the right care possible for many disabled children whose families would not be able to afford it otherwise, while also allowing disabled children to live at home rather than in an institution.

From my experience, qualifying for Medicaid in Arkansas via the TEFRA waiver is no simple task. Caregivers will need to complete dozens upon dozens of pages of paperwork each year, make sure appropriate assessments are done to verify eligibility, and work with their healthcare providers and special needs partners to ensure every box is checked, as needed. While the paperwork piece is cumbersome, I understand why it is a necessity. It helps to ensure that funds are not being wasted and that only children who really need services are getting help. Hopefully, this will help to make funding sustainable over time. I know many individuals do get denied and are not granted Medicaid via the TEFRA act waiver and I can only image how frustrating and terribly disheartening that must be.

If you live in Arkansas and have questions regarding Medicaid, TEFRA, or where to go to get more information and help regarding eligibility for services, please don’t hesitate to reach out to me.

Texas does not provide the TEFRA option and Oklahoma does. I have not found a single school in Texas that provides a setting that is as comprehensive and individualized as Stepping Stone. The RISE school of Dallas is the most similar option I have found in Texas, but PT, OT, and ST are offered in a group setting rather than individually and all students must pay monthly tuition which exceeds $1000 currently. In Oklahoma, the only school similar to Stepping Stone that I found is Special Care, Inc. It is in Oklahoma City and provides onsite therapy services, specialized care, and early childhood education. It sounds Ah-mazing. Learn more about Special Care here. It appears to be primarily funded through donations and United Way. Both Special Care and the RISE school serve individuals with and without disabilities. Stepping Stone only serves individuals with developmental delays and/or disabilities.

MORE COMPREHENSIVE SOLUTIONS LIKE STEPPING STONE ARE NEEDED IN OTHER AREAS

There are many schools in Texas who serve children with special needs, most of which serve children with learning disabilities. In Texas, it seems that the solution for providing services during one of the most critical periods for growth and development in a child’s life, birth to five years, is their Early Childhood Intervention (ECI) program. ECI isn’t enough in my opinion. It provides only a piece of the solution.

It is hard to say how Grey would have progressed had we not taken the leap of faith two years ago and enrolled him in Stepping Stone. I know how fortunate we are to be able to have jobs that made it possible for us to give our children the opportunities we have and bosses who supported us to support our family. The only reason that warrants thinking about where Grey would be had we not enrolled in Stepping Stone is to think about the hundreds of other children whose parents either have no idea how critical and life-changing early childhood intervention can be or do not have resources available near them to help their child, which is very sad to me.

I strongly feel that there should be more schools like Stepping Stone available to children who desperately need them. One of the similarities between all of the phenomenal schools I have read about, including Stepping Stone, is that they were brought to fruition due to the strong will and passion of one or two people who recognized an unmet need. God keeps telling me to explore this option for Texoma, but right now, I am focusing on my Grey and making sure he has what he needs to reach his maximum potential. However, if you are reading this and feel called to bring a school like Stepping Stone to Texoma, please reach out.

And, if you are looking for a wonderful option for donating to – an option that changes lives – please consider making a donation to Stepping Stone or an organization in your community who provides early childhood interventions for kids with disabilities.

One last thing to mention in this very long post, much thank you to Toni Wilson, for being the person who was instrumental in bringing Stepping Stone to life in 1972 and still leads it today . The impact her life has made is immeasurable.

With Love,

Sara

Picture Source: www.crcrawfordconstruction.com

When You Know

I recently had a conversation with a fellow mama who was worried about her little girl’s development. As I listened to her tell her story my heart began to swell and it took every ounce of patience I had to let her finish talking and not interrupt her by shouting out “ASK WHY and ASK FOR MORE”!

I had not talked to her about her child since the spring and at that time her daughter was getting tested and most likely going to receive therapy to address developmental delays. Over 6 months had gone by since that last conversation and little progress had been made in her child’s development, as well as the interventions her daughter was receiving. My new friend had been treated exactly the same way I had when I questioned Grey’s development; the way I know many other concerned parents have been treated.

She was told “every child is different”, “she will probably catch up” , “give her time”, “let’s not overreact”, and “not every child develops at the same rate”. All things I was told and all statements I would not accept because in my heart I knew something wasn’t quite right and we needed to know more.

I listened to her say that she knew that too. So, I gave her the advice that is the partial impetus for this project. Early intervention matters. It can be life changing. You have to fight for your child and be their advocate to give them what they need.

We love our pediatrician and think incredibly highly of him. We still drive a long way to see him despite him telling me the aforementioned statements above for four months when I was telling him that I really thought further attention was needed. I think he now knows my intent and takes me seriously. I at least feel like he always listens.

Most pediatricians see dozens of children a day. The time they have to assess and diagnose is limited and that makes it nearly impossible to observe a child like a primary caregiver can. Actually, not nearly, but certainly impossible.

I quickly learned that Grey needed me to be uncomfortable. He needed me to ask questions. He needed me to tell his story. He needed an intervention. He needed for his doctors to understand that he was not simply a laid back baby. And, so I did.

And our lives changed. When he was four months old, his doctor finally confirmed that I had not (well, at least probably not anyway) lost my mind and that a closer look was warranted. Grey’s doctor initially thought Grey might have had a birth injury, because his left side was barely mobile. Brachiul Plexus was the initial diagnosis that was later ruled out. Assessments were done. Meetings with Specialist ensued. Several hours on several days of me crying in the bathroom at work, in the shower, in the car, etc. while diagnosing Grey myself with the help of the internet followed. I wanted so badly to understand Grey better. I felt that he had to have a diagnosis to receive proper treatment. We had to do what was best for him and how could we possibly do that without knowing what exactly to solve or improve?

The first neurologist we met with was “one of the top pediatric neurologists in Dallas/Fort Worth”, according to a lot of websites and people we interacted with. He told us that we should not worry about Grey and to go home. He did not see any need for intervention. In my opinion, he treated me like an over-reactive, dramatic mother. He shamed me for comparing Grey to his big sister by 16 months, Bella, who met all of her developmental milestones early. (Thank God for big sister. She made it easier to identify delays. I wasn’t comparing Bella to Grey. I was being Grey’s mother and listening to him.)

I asked for a referral for Grey to see a different pediatric neurologist because I still knew he needed help.

I will discuss that interaction in another post. Long story short, we did not find out the reason for Grey’s delays until he was a little over three years old. We still do not know why that reason happened.

I do not want to imagine what Grey would be like had he not gotten early intervention services two and a half years before that. I wonder if he would be walking and talking yet. I wonder if I would have felt his sweet hugs or kisses yet. I wonder if he would have been able to pat his sister on the back like he did for the first time a week ago.

Something unexpected came from working with early childhood intervention services, which is advocacy. Unlike Grey’s doctors, his therapists do work with him day in and day out. They know him. They see his struggles and his strengths. They have supported me, encouraged and validated my questions and concerns. They have helped me question his abilities more than anyone and not in the way I thought. They see strengths that I sometimes miss because I am still fighting for answers, as much as I hate to admit that. They are my Grey’s heros. They are changing his life for the better.

If your child or a child you know is not meeting their developmental milestones, I encourage you to act as quickly as you can. No one knows your child better than you do. In my opinion it never hurts to ask questions. Hopefully, if you feel something is not quite right, you are wrong and are overreacting. However, if an intervention is needed, you do not have to be alone in your quest for the best life for your child. I am happy to help you in any way I can.

With Love,

Sara