The Shoes

Yesterday my thirteen year old son officially qualified for an IEP. The Individualized Education Program (IEP) is a legal plan that identifies a student’s educational needs and sets goals for meeting those needs. Public school kids like my son, who receive special education and related services must have this “Individualized Education Program” (IEP) plan set in place to receive such services. Pretty straight forward. Except if you ask any mother who has had to wade into this unknown world, straight forward is not the landmark for your child, or yourself for that matter.  

This morning when I walked into the kitchen after carpool, I saw a small bag sitting on the table.  I burst  into tears. Inside this bag, that my little dark haired hurricane packed, was a brand new pair of wrestling shoes he had asked for, for Christmas. They have never been worn, and they will be returned without ever having touched a wrestling mat. A few months before Christmas break my son started to decline again in his ability to get through a middle school day. His grades plummeted, his absences grew, his anxiety and his self esteem lay quietly for no one to see except me, on the bottom of the bathroom floor. I hired very expensive Executive Functioning Coaches (these folks specialize in neuro divergent kids, like mine, who have ADHD). I showed my son meditation, and EFT (tapping), we made reward programs, and goal charts. I begged, I went broke, I sacrificed my own nervous system in an effort to get my son to fit *back* into the mold.

About a month before break he turned a corner. The coaching was helping. He was going to school with some ease again. We decided he was ready to start pulling up his grades. He went to work. We had emails, and meetings, and conferences and in the end it wasn’t enough time to get his grades up. He was defeated but we encouraged him to finish strong as the goal is not really the goal, but the habits you make up along the way that give birth to the goal itself. He had long since had a 504 Plan  in place (Section 504 is a plan geared toward ensuring a student has equitable access to a learning environment. An IEP focuses on educational benefits, and often includes direct services- think Special Education vs extra accommodations). This 504 had followed him since grade school, but I had a growing suspicion that if we were to survive public middle school we may need more support. 

There is a certain stigma that comes with an IEP or any special education requirements  because people automatically assume “special needs” as though someone who has special needs got dealt a bad hand. If you ask my thirteen year old he would rather suffer in silence than be seen in a Special Education teachers room so I know this stigma still exists. Middle school is the one time in your life being different is the absolute worst. I think it has been so hard for me to ask for this assessment because on some level it would require me having to adjust my expectations of what my child is capable of (again) as well. It means I have to stop trying to force him into a mold he was never made for. A mold that in 8th grade, feels safer to him to be a part of  then separate from.

Asking for the IEP also meant I would have to face my fear of being left alone in this wild unknown with my boy, for the millionth time. See, we have been here before when the odds were stacked against us. When no one believed me something was off. When in second grade, they sat me down and told me they thought he needed Special Education and I fought back and said “No. I think he has ADHD and I am going to test him for that first.” We’ve been alone when his behavior was so wild and out there, or something he said should have come out of a grown adult’s mouth and at that, would have still been considered inappropriate. It’s been me and this kid when our own family members wanted me to “spank it out of him” at four, or when my own dad couldn’t believe how gentle his father and I would be with him after bad behavior in front of people. It will put hair on your chest to learn how to stand in the face of discrimination and judgment without explaining away what someone is witnessing. I have never, ever in my life met stronger humans than the ones who lead, humbly, those non neurotypical babies of planet earth. 

It’s ironic for me this IEP assessment process, and now knowing he actually does qualify for it. On the one hand, it’s validating because you knew as his mother, that something was not working. You knew it was not entirely in his control either. You know the things other parents and kids say about him and because he presents so “normal” you suffer their scorn when he doesn’t measure up to their expectations. So, qualifying for something like an IEP solidifies your deep knowing, but simultaneously it reminds you that he (and you) must continue down a road much less traveled by the masses. You learn to keep an arm’s length from those parents who don’t know, nor care to walk a day in your shoes and you stop telling everyone what ADHD actually is, versus their minimal understanding of it. Having this diagnosis, or qualifying for extra support is a glaring reminder that the world has certain expectations of our children, and when they don’t measure up they fail. But I wonder, isn’t the world failing them when they can’t course correct to more appropriate expectations?

My son and I often feel we are stranded out in a field covered with the morning mist. We can’t see to the right or to the left and we often don’t know which way to go. Most days we hold hands. Some days we can’t even stand back to back. The soil is drenched in our tears and our blood and our sweat. Only the earth knows how we crawl, one hand feeling out in front of the other, trying to find the path. We ache for home, we ache for some safety and yet the dirt below my knees tells me home is on this road. I am supposed to know more than my son. I am supposed to lead him, fill him with hope and show him there are solutions, yet I find myself more and more aware of a world only just barely emerging with more opportunities for kids like him. The day he was born I was born again too and while I don’t recognise the young 29 year old woman I was, I am impressed by the folds the journey has created in my soul. It is true, a lot of the day’s I want off this mountain and lead out of this field. But some days, I am so eternally grateful for it, and for who I am becoming because of it. 

Those wrestling shoes were packed up in excitement last week as he headed off to school after a long break. He was so pumped to try something new with his buddies. When he came home he crumbled into a million pieces. At school he learned his grades were so poor from that prior semester (that we hardly survived) that he wouldn’t be able to compete. Within days of that he was suspended for the first time for bringing a fishing knife in his bag. In an effort to have a reason for his principal (because Noah has learned his impulsivity is not acceptable to the world) he said it was because he was being picked on. While this is true, the kid who constantly targets him was also a friend at some point and my son does his best to ‘talk smack’ right back. I knew in my heart  it was far more about a subconscious “self sabotage” than feeling afraid of another punk kid. And so did his principal. The PE coach encouraged Noah to come practice with them for a month and pull his grades up, but after the suspension and so many days away from practice he is too ashamed to show up. In his words this morning he said “I don’t want to have to explain to my friends why I can’t compete yet. Return the shoes, they remind me I am a failure.” 

Dear Son,

You rend my heart into pieces when I look into your eyes. I have never seen such bravery, such courage from a boy your age. I see you every day when no else is looking. I see you fighting invisible demons by yourself when you are trying to get out of the car. I see your courage to forgive those who are so ignorant and your kindness to see the best in others. You love harder and with more freedom than most adults. Those wrestling shoes don’t say failure to me, they say fighter. You have NO idea how good this is gonna get for you young man. I don’t have all the answers, and I don’t know if we make it off the mountain, or if we just make it our home. What I do know is that those who come behind you, those just like you will have space in this world that feels like home to them, because of YOU. There is no one I would rather be like when I grow up. You are my hero. 

Love,

Mom xoxo

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