Tuesday, March 26, 2013

My Super Mom Cape

It's been a long time, and I haven't written because life has been going pretty well.  Ryan is maturing and with that, everything seems to fall into place a little bit better. It isn't until there is a true issue that I seem to have to leap into action to save the day, so most of the time, life is crazy and busy and we are making memories.

Recently, I had one of those save the day moments where I had to put on my super mom cape and leap in to action.  Ryan is so high functioning that sometimes it is easy to forget that he has special needs.  The education system is a prime example of this.  Why is it so hard for educators in public schools to often think outside of the box?  I know they are busy and have 22 other children, but each one of those children requires something a little different...they are not all text book and it is not always as easy as A B C 1 2 3.  They treat anything my son does as intentional instead of working to find a solution.  I want nothing more than for my little boy to be "normal" but I came to love and accept him long ago as his own kind of "normal".  Case in point is the email below that I sent to the school two days ago.  It was a collection of many frustrating months of not working on a solution expecting him to adapt to his environment instead of adapting the environment to him.  I flew off the handle a bit, but it is time for me to be angry and frustrated and expect results.  Here goes...

Dear Team,

Last week I had a conversation with Mrs. Rovedatti Jackson that was a result of many phone calls, emails and teacher/PCA notes over the course of several weeks. As most of you are aware, Ryan has been gagging and throwing up prior to and during the lunch period. This issue has been increasing and seems to be set off by the thought, smell and site of the cafeteria and certain foods. There are several things that have happened recently that have made both my husband and I very upset and feel the need to speak up.

I had been receiving notification from the nurse when Ryan would throw up. Each time I would reassure her that he was not sick and to send him back to lunch or the classroom. Approximately one month ago, I was called by a substitute nurse and asked to come pick him up. When I told her that he was not sick, she said that because he threw up I needed to pick him up. I stated again that he was not sick and she asked me what I wanted her to do. I asked if she had talked to his teacher or aide and she said "oh, he has an aide, no I didn't speak to her". I happened to be home sick, so leaving work was not an issue this time, so I went to pick him up. Just as every time before, he came home and was fine. While I do want to be notified when he throws up every time, I was quite upset that she wasn't even aware he had an aide, she didn't check with the teacher or aide, and there wasn't any note with this issue for her to read on his emergency card. I do not need to be judged, as I felt that day, for not picking up my son when it should have been noted somewhere that this is a common occurrence and the teacher or aide should be consulted.

I received a call from the school nurse approximately 2 weeks ago that Ryan had thrown up on the table. She was calling just to let me know, which I appreciated. She went on to say that she and Mrs. Rovedatti Jackson had talked and they feel Ryan may have something like an eating disorder. Anyone who knows Chris or I would know that we have tackled every concern we have ever had with Ryan if there was even the slighted sign something wasn't right. We fought to get a diagnosis from the time he was an infant, going to every doctor we could from here to Pittsburgh, not stopping until we had answers. We do not sweep things under the rug and if we thought even for a second that Ryan had something like an eating disorder we would have sought the advice of our physician immediately. Ryan was a patient of Barclay Rehab for quite some time. He was seen due to sensory issues being apart of his diagnosis. Christy Shaffer was his OT and worked diligently to desensitize him with food issues. You can't imagine how embarrassing it was to walk through the grocery store with a child gagging and throwing up as we passed the dog food aisle at just the thought of what was in those bags. After quite some time, Ryan successfully completed his therapy and was discharged. We no longer deal with this issue at home or in public, but the issue remains and is increasing in the school setting.

Ryan's teacher, Mrs. Mesich, is amazing and he really responds to her. Through conversations and emails, I have asked if Ryan was having difficulty in the cafeteria, why not send him somewhere else. She consistently reassures me that his time in the cafeteria is valuable and he enjoys the socialization. I am not sure who made the decision, but it was decided that if Ryan threw up, he would be removed to sit at a table by himself, and I think I heard he faces the wall. So now, he gets no socialization, is treated as if he has done something wrong, and the other kids see him sitting by himself. My husband and my worst fears are becoming realized that kids are going to remember that Ryan was the boy that threw up all the time and when he is seen sitting by himself they will know that yep, Ryan threw up again. Our BSC is permitted (by the school) only one hour a week in school to observe Ryan. Knowing this was an issue that needed attention, she devised a plan to have Ryan sit at the end of the table so that he has easy access to the garbage can if he felt the need to throw up and then he could quickly return to his seat. She also advised the aide/teacher that he should sit with, and be surrounded by kids that pack their lunch. It is often the sides on the food trays that come with the purchased lunches that bother Ryan. Please note that Ryan is also on 15 mg of Aderol for ADD, also a part of his diagnosis, which acts as an appetite suppressant for up to 8 hours so Ryan usually doesn't not eat during lunch time. Him not eating lunch is not the concern, the sensory issues with the lunch experience are the concern. For almost one and a half weeks, the BSC plan was successful, no throwing up, and we were so happy and praised Ryan for another success at school. Today while reading Ryan's school notes from Friday, it was noted that he had thrown up twice at lunch. So we asked Ryan why he threw up and he told us that Will hurt his foot and had to set at the end of the table by Ryan. Will bought his lunch, Ryan saw what was on his tray and he got sick. The aide's answer to Ryan was "do not to look at Will". So, the child that has a temporary physical disability received accommodations, but my child who has a true diagnosis with an issue out of his control has to deal with his environment or sit alone?

Mrs. Rovedatti Jackson seems almost as frustrated as we are and during our conversation early this week said she was very limited in what she could do and would put some thought into possible solutions. She did recommend that we seek an evaluation for therapy to assist Ryan with desensitizing his aversion to the cafeteria and food. We are willing to seek out any treatment that will help Ryan be successful but feel this is an issue that is occurring primarily in the school setting. We are requesting an evaluation with the school OT. In addition, the school district OT be used on a consultation basis with the teacher, aide and BSC to provide sensory adaptations/modifications to help desensitize Ryan in the school setting. We are also requesting a team meeting to make changes to the 504. We also want to know the duties and responsibilities the aide has to my child since she is the one working most closely with him...if there is a day "peaches" are being served, why is there not a contingency plan in place or if Ryan throws up, why is he not taken for a walk for fresh air? What if the teacher or aide are not in school, how will the substitute know? We have contacted an Advocate to work with us to ensure Ryan is receiving all that he is legally entitled and that the ADA is being followed so that in the next 10 years he has at Hempfield, will be filled with successes and not as much frustration and anger and we feel right now.

Individuals with Disabilities Education Act (viewed on ADA.org)
The Individuals with Disabilities Education Act (IDEA) (formerly called P.L. 94-142 or the Education for all Handicapped Children Act of 1975) requires public schools to make available to all eligible children with disabilities a free appropriate public education in the least restrictive environment appropriate to their individual needs.  IDEA requires public school systems to develop appropriate Individualized Education Programs (IEP's) for each child. The specific special education and related services outlined in each IEP reflect the individualized needs of each student. We do not have an IEP, but it has been observed and stated that Ryan is having a difficult time with some areas of learning that are challenging and will remain so as he moves into the higher grade levels...we want an IEP?

Thank you for your time. Please contact me to schedule a team meeting as soon as possible. My husband, our BSC, and if necessary the Advocate, will make ourselves available.

Thank you

So there you have it...getting ready to head into battle but this time I am taking an army with me.  We have an advocate, a first for us, on our side and I am loaded with the goal of finding solutions and doing what is right for Ryan.  No more Mrs. Nice Mom.  Wish me luck!

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