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Every Path Begins Somewhere: Early Intervention for Children with Special Needs

byAnita M. Birk I remember the first time I walked into the doors of our county school for children with special needs to receive Early Intervention services. I was bringing my son Owen, just two months old at the time, for his first physical therapy session, to address a neck and head posturing condition called torticollis. I remember seeing the tiniest little wheelchair I had ever seen sitting in the hallway, and I thought for a moment about the child to whom it may belong, and truthfully it made me so incredibly sad. I had a sense of guilty relief that I had a “normal” child who would never know such struggles. After all, I had a child with a stiff neck--nothing more! I watched as teachers and aides efficiently loaded children off of the buses with smiles and joy--wondering what they were so happy about working with all of these sick children--and I saw all sorts of children with developmental challenges beyond description. I distinctly remember thinking, “Why are we here…we aren’t a member of this club?” So little did I know. Early Intervention As time went on and Owen grew, we marked each passing day thinking the next big milestone would be just around the corner, and as the days grew into weeks, and weeks grew into months, it became clearer and clearer that something was terribly wrong with him. At seven months of age, Owen began to seize uncontrollably one evening after a routine bath. We ended up in and out of the hospital for the next two weeks trying to control the seizures with experimental medications not even approved for infants. It was during our hospital stay, after months of testing and waiting, that our son was diagnosed with a rare brain malformation called Polymicrogyria, in addition to a mitochondrial metabolism disorder. So it became official. We became members of “The Club” that day, and have been going to the county schools for children with special needs ever since, as part of their Early Intervention (EI) program. Owen now had more staff members than a small business working for him! He had an early interventional specialist, physical therapist, occupational therapist, speech therapist (who also helped with feeding issues), more than five medical subspecialists, and a full

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time administrative assistant, also known as Mom. Our lives had become very busy, and juggling all the driving and appointments was often overwhelming! Sometimes I just wanted to say no to the next scheduled home visit as it all felt so intrusive at times.

The Program Coordinator for Early Intervention services was instrumental in helping our family juggle the extraneous flexibility needed when scheduling services around Owen’s multitude of physician and clinic appointments, feedings, private therapies, and his daily routine that was necessary to his well-being, like medication administrations and naps. She always maintained an open door policy with us and treated all of our questions and concerns with the utmost priority and attention. We painstakingly developed specific obtainable goals on a quarterly basis through an Individualized Family Service Plan (IFSP). Owen had staff involved at every level for his developmental needs. We set very small goals for Owen, such as helping him fix his eye gaze on a toy for two to three seconds, correct his head tilt on his own 50% of the time, or roll over from his back to belly at least one of every five attempts. It seemed like an insurmountable task to set these goals for a child who was such a developmental mystery.Our early interventional specialist, known in many locations as a developmental therapist, was our “go to” person for any developmental questions we had regarding

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Owen’s progress, and was also a positive and encouraging force in our lives as an advocate for our family as a whole. Owen is one tough kiddo to bring out of his shell as he is extremely delayed socially, but our EI specialist consistently stayed motivated to do whatever it took to engage Owen, even when he was at his peak of unresponsiveness due to seizure medication side-effects. Our EI specialist focused on the things that made Owen connect with the world around him, like musical toys, books, and singing, and she used those tools to connect with Owen in a fun but developmentally appropriate manner. We knew that we could always go to our EI specialist with any struggles we were experiencing, and she always worked tirelessly to find solutions to address or resolve our concerns. The biggest gift that anyone can give our Owen is the gift of joy and laughter, and the therapy staff was amazing at getting Owen to smile. We were fortunate to have expert therapists who always treated Owen’s body with extreme care, and were conscious of his energy level, health issues, and sensory defensiveness. Although Owen is non-verbal and rarely ever cries, the therapy staff always seemed to know when Owen needed a break from therapy or when to just stop and call it a day. What I think we always valued the most from our therapy team was the gentle honesty in which they would discuss Owen’s limitations with us. When you have a child with so many needs, you either get brutal honesty--“he is never going to talk”--or you get wishy-washy honesty--“there is always hope”--so I always appreciated just pure, but compassionate, honesty. I have always been aware that my son will not be a gold medalist in the Olympics, nor will he probably ever walk at all, but I do want information on how to improve my son’s overall well-being within his range of abilities. That is exactly what the therapy staff did for us. The Emotional Journey to Advocacy During the time after Owen’s diagnosis, we were mostly numb with denial and shock. I cannot say that we still do not feel the sting of the devastation we felt the day of his diagnosis, but we are coping and the sting lessens with time. We grew to love the EI staff, as if they were an extension of our family, and often times, I felt they were in our home more than we were! We would like to encourage any new members of “The Club” to try to keep an open mind, and to know that it is okay to be overwhelmed and filled with worry and even grief. Nevertheless, you have a voice, and you MUST begin to use it immediately when advocating for your child. In fact, for most of us, our voices are the ONLY voice our child will ever have! You have to stay clear-headed and goal-oriented, even if you are overwhelmed with grief and exhaustion. We had no idea if our child would even survive from day to day, let alone figure out goals for his development. We decided to just take it slow. Progress is always slow with lots of setbacks, so use your EI staff to the fullest to help you during the process. Not all

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programs are created alike, and you may not have all of the services I mentioned, but you will have good services, with people who truly care far beyond their job descriptions. They will work with you with a level of compassion, priority, and expertise that we have come to know and value. I guess the most important thing I have learned from EI is that they are there to help you provide the best possible outcomes for your child based on your child’s own unique developmental path, and you have to trust them to assist you. Trust takes time to build, especially if you have a child who is very fragile, so don’t be afraid to express your concerns about handing over your child to someone who has never handled him before. This goes back to being your child’s voice! And although it is a hard pill to swallow, EI staff cannot “fix” your child if the issues he has are not fixable. In my son’s case, no amount of intervention will change the fact that he has a malformed brain. It is a permanent condition. What they can provide you with are the tools to help your child succeed on his own unique developmental path, and to educate you, the parent or caregiver, on how to help your child achieve developmental success at home and in life. Our children have a great deal of potential, no matter what their circumstances, and EI can help you find the key to unlocking that potential. Owen has since graduated from the EI program and is now in a preschool for children with special needs. Yes, the IEP and transference of care is an entire story all of its own. But it is bittersweet that we have moved on from EI. Owen’s team was instrumental in shaping my attitude, and in helping me to learn how to be a full-fledged advocate for my son. Anita M. Birk lives in Ohio, and is married to a Methodist pastor. They have one child named Owen, age three, who has Mitochondrial disease, Polymicrogyria, Lennox Gastaut syndrome, and the list of all the other major problems that go along with neurological conditions. In April of 2008 she launched a local support group for the surrounding counties in Southeastern Ohio, called Mommies of Miracles (MoM). Mommies of Miracles has since grown to a format that does not support monthly meetings, and has become Mommies of Miracles on Facebook where they now have over 400 members. http://www.facebook.com/?ref=home#!/pages/Mommies-of-Miracles/123554117671911?ref=sgm