As I prepared for the IEP meeting, I gathered as much information as possible to be as prepared as possible. Does it seem easier to ‘go into battle’ when you have a better understanding of what you may be up against? I was at least afforded the opportunity to know the school district’s ruling which gave me a specific area to research. We all know some of the best information comes from talking with someone who has ‘been there done that’ and so I was put in contact with a mother of a 12 yr. old Down syndrome son. She certainly had a better insight as to what I was facing and how to best approach the situation. I learned her son had originally begun his educational career with a DD (Developmentally Delayed) diagnosis but the older he has become; it has changed to an EMR (Educationally Mentally Retarded/Mentally Retarded) diagnosis. 12 years in to this life and the diagnosis doesn’t bother her as it once may have, say at my stage. She has come to accept the terminology but not the diagnosis. As I mentioned in the last post, I could look past the ignorance of anyone who needed to use those words for their own technical purpose as long as it didn’t hinder Harper’s transition and inclusion into Kindergarten. My acceptance of the terms on paper isn’t to be mistaken for consent of its usage in today’s lexicon. I believe the utilization of terms like ‘retarded’ are at best, outdated and inaccurate by their very definition. Spread the word to end the word! I was given ample time to express my concerns with the terminology, in regards to Harper’s case, and learned the diagnosis had become more ‘fine tuned’ a mere year ago. Had we have come into the system this time last year, Harper would have received the more appropriate DD diagnosis. I find it hard to accept and believe the state of MS could completely do a 180* turnaround despite all of the progress we have made in the realm of special needs. We know for a fact, it isn’t about a child with a disability not being capable of learning, we know it is a matter of unlocking the means by which they learn. Giving an EMR/MR diagnosis is just the same as taking the key and throwing it away!
Each member of the IEP team was given a chance to state, in written form, whether they agreed or disagreed with the diagnosis. 4 out of 6 members, including myself, disagreed giving reasoning such as: “At this age, Harper cannot be sufficiently tested to yield results that would lead to a ruling of EMR,” “giving a MR ruling at this age limits a child to what they can do,” and “Harper’s young age complicates accurate determination of cognitive skills and Harper’s adaptive skills at this time are well beyond your standardized assessment.” It is mind boggling to me as I literally look at a child, sitting next to me, who can imitate and emulate concepts like sign language, patty cake, peek a boo and blowing raspberries on cue, yet have some arbitrary party diagnosing my child as unable to learn. This is the ‘mentality’ we need to correct and address. It isn’t over in terms of advocacy, however for now, it is Harper’s diagnosis on paper. If there can be a silver lining, it very well may provide more services for Harper, which will only further allow more growth and development.
Therapy has begun again for Harper and this time, a more trandisciplinary approach is taken by the therapist of the Children’s Center. Much of what Harper is doing these days overlaps in terms of therapy, so they take a team approach rather than one on one. Her therapist will also be setting up her environment to elicit the movement or task they wish her to complete rather than total manipulation of Harper to accomplish the task. It is a very different approach however, we know that different doesn’t mean bad or wrong. I am every bit as confident in the therapist through CCDC as I was at Easter Seals AR or Kidsource. I owe them all so very much for getting Harper to where she is today and providing such a firm foundation, upon which we continue to grow and build. Her new therapist were more than complimentary as to how beautifully Harper moves and what all she has accomplished. They also, however, have already fallen in love with her and have warned about unexpected visits just to stop by and play!
One method we are going to be utilizing with Harper is a form of treadmill training. This uses the movement of the belt in motion to help learn the proper gait of walking. Children with Down syndrome often don't learn the proper cadence of walking before the physical aspect of walking, which developmentally occurs in that order. This not only allows for a more sloppy walk, it can be responsible for a delay in cognitive and social development as well as motor development. Studies have now proven the treadmill training, generally practiced for 8 minutes a day, has decreased the time frame for when Down syndrome children first walk by almost an entire year. Although Harper isn't showing signs of anticipating taking steps, it is imperative we begin the training at this stage, as it is in the pre walking stage when children learn the rhythm of walking. What seemed to logically go hand in hand, walking and timing, really isn't so. What a fascinating aspect of development to learn!
Harper will also be placed back in a support system for her hips. You may remember the figure 8 wrap we did a few months back. She continues to 'W' sit and the hip huggers will allow for all the proper movement while constricting the excessive rotation of her hips. Why does this matter? Like many aspects of Down syndrome, the effects of a negative motor rotation may cause future pain, discomfort and additional ailments which can be avoided with proper development. The key is to correct these bad habits now. Preventative vs reactive. We will also be working on a proper stance. Harper is over pronating her ankles and feet and we want to establish a way to rotate them outward. This will widen her stance and distribute pressure more evenly thorough her feet, ankles, legs and hips. Placing an object just under the inner portion of her feet will force her to bear weight on the outer portions, feel the sensation of her outer feet and properly distribute her weight.
We have much to do but are excited about all offered Harper here in Hattiesburg. It seems each and every day, I learn of something new for her. There is no doubt we are here by divine design! Whether it be with her Playmates group on Mondays, the ARC Mother's Day out program or the kindness shown to us through her new therapists, we know there is no other place for our family. What immense peace comes with knowing you are right where God wants you!
From time to time, we do come in contact with those who mean well however just don't know what to say upon learning Harper is special needs or more specifically, Down syndrome. Almost always, the first reaction is for them to quickly find a relation to someone in their life with special needs as well. You hear things like, "My brother's wife's cousin's uncle has a mailman that delivers mail to a special needs person." Yes, they get that far out some times. HA! The next thing they scramble to do is give some sort of consolation for being the mother of a special needs child. For example, a lady in the parking lot the other day told me that one day, my daughter would one day go to Heaven and there she will be given a new body and then be normal. I quickly and most polietly told her that Harper was normal now. Once again, God doesn't make mistakes. So I ask you, what is your definition of 'normal?' Where is the line drawn between normal and not normal and who draws it? Harper may wear her differences a bit more outwardly but it doesn't mean she is any less normal than you or I. We must break down these stereotypes and embrace each other as being different, not in terms of normalcy. I pray Harper and I both can continue to aleviate any negative connotations associated with special needs children. Maybe we planted a seed that day which will continue to grow into thoughts of acceptance and inclusion. I'd like to think so.
