Do you remember what those butterflies felt like the night before school started? It seems like yesterday that I was the new girl in 7th grade, getting on that bus and feeling very anxious for my new school surroundings! The combination of what to wear, meeting new friends, starting new classes, and the rush of that new start of a year was exciting but also made me anxious and stressed. Each school year gives us new opportunities to go out and make our mark on the world!
As an adult, getting kids ready for school, as many of us know, gives us a whole new perspective! Those nervous butterflies have a different meaning......what meetings do we have tomorrow? Have we signed all the paperwork? What are we forgetting?? Have we paid for all the lunches, sports, music....do we have enough in our account to cover all this? That change from the free spirit of summer to full throttle can get the nerves going! Raising our girls, fall was always exciting, going back to school shopping at their favorite stores, braving the school supply shopping aisles and buying all the cutest organizational folders one could find, ... it was a normal kind of fun and stress! But then Andrew came along, and well, nothing came as easily.
September is not only a month for a new school year, but the end of a fiscal year for
Andrew at home. This means all his state paperwork is due. If you know anything about the state application process and paperwork, I am sure you can imagine what this might entail. Detailed accounts of the last year with planning for the next years future coming at a time where school meetings are ramping up as well. There doesn't seem enough of me to go around.
We are 16 years into our process, and we can't seem to figure out a seamless transition for back to school! Is he just too involved and too complicated? Or am I just that OCD and unwilling to share that control? It is definitely a combination of all listed. The change of teachers or staff means that we need to train a whole new set of people to meet Andrew's needs. In a perfect world, we would have the same teachers and paras throughout so we wouldn’t have to inform everyone about Andrew over and over again. To Andrew's benefit, we do have a few specialist teachers who have been with him from the beginning which helps! But, the reality is, all staff each year needs up to date training on Andrew's basic care and health. This involves teaching how to put Andrew's hearing aids in, put his orthotics on and off so they get on the right feet, the functions of his gait trainer, or how to adjust his foot pedals on his wheelchair. Not to mention, how to transfer Andrew physically, with good body mechanics all while giving Andrew enough support, but not that much, so you encourage independence and optimize his potential physically. Oh, we also need to share what to watch for in his hips because of his multiple hip surgeries and be aware of his spine and neck given his most recent spine surgery. Now, for the medical things... seizures, abdominal hernia issues, fainting, eating/drinking input/output records, medication changes. Then to the sign language, his body language and communication. By the time we get done discussing the “basics” of Andrew, we haven't even had time to get to the part where he could learn something, or how he can be involved with peers of same or mentor type friends? Or to even gauge if Andrew is happy? Who would even know? I would. I do!!!! I know how he breathes, the deep sighs, or the sounds of excitement! I know what that look is. I know how to read into his subtle signs that may show he is not feeling well and if he may require additional attention. At home, we have that freedom to watch for these signs of communication or health changes and can act on them.... but at some point, I/we need a break. We do our best to give all of the details about Andrew, but we know it takes a lot of professional understanding to make headway for such complex needs, and it is not easy- even in the highest trained settings!
If this gives you an idea that sending a special needs child back to school can be stressful, you are absolutely correct!! One of the hardest things about raising Andrew is sending him to school.
When Andrew was in primary school, I went to a deaf blind conference for moms and there was a whole segment and discussion about how to be effective with educators who will be working with your child. Jerry Paltroff was the speaker, and he spent several hours on the subject. One of our assignments was to go home and write an "I believe" statement. In this, he wanted us to write down what we thought of our child, their capabilities, what you know of them, what they love, don't love, and what you see in their future. With this statement, you share copies at the next IEP meeting and have it on each of the teams desk. Have them read it, with a copy to take home. This gives the team a good idea where you are coming from and helps everyone understand your child from your perspective.
The other piece we were told to do, was to write a little "get to know you" handbook. A book on your child, a picture of them, their parents or siblings, what they like to eat, special things to stay away from etc. This might help new staff learn about your child and create a positive relationship for them right from the start.
Our son, Andrew, was about 3 at the time of this conference. I had been spending the first 3 years of his life not measuring up to any milestone. Our dreams at that time were for him to sit on his own, or take a step, or eat at the table with us. I was desperate for someone to see the potential I had in my heart.....whether it be false hope, or a mother’s desire to not give up. This conference changed my perspective and gave me tools that we COULD USE, things we COULD DO!! We were anticipating Andrew to go school but I was not prepared for the huge team our son had, easily up to 20 around a table at a given time. These conversations seemed to be revolved around all that Andrew wasn't. All the things he couldn't do before you could talk about the possibilities. It was the worst and I hated every minute of it. It was like taking that bandaid off the big gaping wound that you just so badly wanted to cover up. In all reality, I didn't want it to be like this. I mean, raising Andrew is difficult and these times would bring was out grief of what his life is or isn't. But what was even harder, is when others don't believe that your child has potential. Having this little "We Believe" statement on paper in front of each person on Andrew's new school team, gave them the expectation that we DO have expectations for our beautiful boy. It might be hard, and different than our girls, but belief started with us, his parents.
There are so many people in this world who have dedicated their lives to kids like Andrew. People like Jerry Paltroff, a professor from Boston who flies all over the country to speak with teams about thinking outside that box. Bringing a whole new perspective and understanding of that child so that this boy or girl can have a chance in ALL systems! Literally doing a 180 with mindset and talking about all that a child IS and what gives them JOY. This approach changed my headspace, and hopefully changed how I interacted with Andrew's team. I know I wasn't perfect, bridges were still burned, cages still rattled, and some regrets in the processs, but it was a tool that I go back to still 13 years later. A tool I use to remind myself of where we started and to keep trying, and to still believe. This school thing isn't easy and parents of special kiddos, this IS HARD!! When you screw up, give yourself grace and get back up. If you BELIEVE in your child, hope and possibilities override the obstacles, and hopefully your child's team will see your heart's intentions. Your child is depending on YOU to help them find their purposeful, meaningful education while they enjoy their days at school.
(This was the original from 2008)
Fast forward to age 16. There are so many things on that first belief statement that Andrew has accomplished, is starting to accomplish, or it is still a goal. This was a pretty spot on assessment for the life we wanted for our son. I still have to flip that switch at times and create a positive thought process to something that seems impossible at times. This isn't an easy job. It isn't the way it was supposed to be.....but then, maybe it was? Who is to say we are all meant to be like Einstein? Maybe there will be that Einstein moment because of the life Andrew is living? That seems more like it. :)
What other tactics do you use to prepare yourself and your special child for school? Do you have any tips for your team that seems to make a positive effect? Please share!
-Nicole, Andrew's mom