It's been so long since I last posted. Life seems to have gotten away from me. The day to day things have seemed so overwhelming that I have been incapable of adding "one more thing" to my to-do-list. So much has happened the last two years. Quick summary:
- Cayden is now a teenager. With all it's glory. He's MUCH taller than I am, wears a 12.5 in men's shoes, and his voice is very manly.... But boy, is this kid handsome!
- There have been six (if I'm counting correctly) cease and desist orders given to other children in his school due to their relentless bullying and assaults. These situations were found that C was not at fault. Were there times when he was upset because the other kids were not following the rules? Yep. Did that aide in the attacks? Yep. Does that warrant theses malicious actions from others? Nope. These kids, unsolicited, make these plans to intentionally overwhelm and upset him. His reaction is their entertainment. One of the events was after school and we were on the phone together. He was asking me if he could stay after school to finish some math homework. There was a lot of screaming to which I heard C saying "STOP! DON'T TOUCH ME! I SAID STOOOOOP!". I was 4 minutes from the school and couldn't get around traffic. I couldn't hang up the phone and call for help, because if I did that, I wouldn't be able to give him instruction and help him get to safety. These CHILDREN trapped C in a bathroom, chased him screaming and making threats. I threw up twice that day and cried for hours. It was the very first time he begged me to not send him back to school. It was the very first day my faith in the school's ability to keep my child safe wavered. And the next day I took the day off work and went to school with him, per his request. Can you imagine? A 7th grader inviting his mom to spend the day with him at school? I threw up twice that day and cried for hours. But this was NOT the last time.
- Escape routes and safety plans were implemented into his IEP this year due to the harassment, physical abuse, and verbal abuse he endured from his peers. This sickens me. What kind of a world do we live in, that so many other kids feel it is acceptable to antagonize others to their breaking point?
- The school staff has been wonderful. We have amazing communication and everyone of them is genuinely invested in his well being. Many accommodations have been made that are, in their own ways, troublesome for the staff, but in his best interest. So these things are followed through with without complaint. As a professional I understand the limitations and the requirements to follow guidelines for disciplinary action. As a mom, I'd like them to be banished to an island where respect, self discipline, and acceptance is mandatory to get off the island and back to their regularly scheduled life. Buh-Bye.
- We have felt support and understanding come and go from friends and family members. Most of which could not imagine living in our world. The daily struggles, the extreme emotions, the hyper-vigilance. The immense anxiety every time you see an email, text, or call from the school. The time it takes to respond to each of them. I have lost friendships by their choice or mine. When things get tough sometimes people have to go, for one reason or another. Many relationships have been distanced and any information given has been censored to prevent conflict and judgement by others. Because, again, they will never understand. Our life will never be typical. And your experience as a child and/or your child rearing practices will never be anything like ours. Your judgments and opinions are invalid and not necessary, you will likely make things worse. There is a difference between support and criticism, many do not understand where one line ends and the other begins. And almost certainly find yourself on the outskirts, or the outs. Our circle is small, but mighty. We tend to like it that way.
- I have a 3" binder FULL of correspondence (pages are printed 2 sided) from the last two years. This does NOT include phone calls or texts. I keep these for my own records. It's how I track progress and declines. Much as you would with any research project. You have to have data. Living with a child on the spectrum means you must never stop learning and never stop trying to understand. Information is power.
- I have heard "I totally understand my kid....", "that sucks, have you tried....", "maybe he needs more consequences". 1. You will ever understand. 2. Yes, I've tried that.... and so much more than you'll ever fathom. 3. Screw off. There are consequences, consistent ones.
There's so much more.... but I think this is a pretty good snap shot. I could go on for days. So, now that we have that out of the way, here's the most recent update:
There are times in life when we feel lonely. Most of us have the ability to reach out to friends and family to pull us out of our funk. But imagine going over TWO years without spending any time with friends. Imagine never having a phone conversation with anyone besides your parents. Imagine believing you have these 4 great friends, but them not believing the same. Never including you, never reaching out to you. Never returning your text messages or answering your phone calls. Imagine how that fuels your loneliness and damages your confidence.... But imagine your brain works differently, so you cannot connect the events to the feelings. You have no idea why you feel this way. You so desperately want to "belong" and sought out, but no matter what you do, it doesn't happen. Now imagine being a parent to a child experiencing this. My heart is crushed. Yesterday was the last day of school. C came home feeling kind of bummed. It took him 6 hours to put the pieces together why he felt that way. He said "it's the last day of school and it might be the last time I ever see my friends". And he's right. We have made the choice to transfer him to a charter school next year.
As a parent I cannot watch him go through any more turmoil, physical assaults, verbal assaults, fear, and anger. I don't know how to respond, except with a hug and an "I love you". I want so badly to give him the opportunity to have a friend. Just one. He sees the other kids hanging out and making plans. He sees his younger brother with a best friend for almost a year, the two inseparable. He envies that, I can tell. He feels left out and that it's "unfair". He's right. The look on his face and low tones in his voice tear my heart. I have to fight back my cries until I am alone because I do not want him to feel like he cannot talk to me, because he makes me sad. Because it's not him that makes me feel that way. I don't want him to think he has to take care of me. This is not about me. This is about my kid, he deserves love and acceptance. But in a world of disrespectful kids and low tolerance and understanding for those with differences, it seems he doesn't have a chance.
I want to take it all away. I want to make people understand. I want kids to know he is not a bad person. He has challenges that are not typical. He can be loud and react in ways others believe to be over the top (it totally is to the rest of us, but to him it's not). He, like all of us, needs support, fun, and laughter. He is a great friend. He is loyal and he cares more than anything about your well being and safety.
I took him to see the drift cars this last weekend, just the two of us.... He got to ride along for almost an hour. He had the BEST time. I haven't seen him that content in months. Even my girlfriends noticed a difference that night at dinner. In those moments he spent with another person, driving ridiculously fast, burning through tires, wearing a helmet that was as heavy as a bowling ball ( I know because I went on a ride too, and holy cow) he felt peace. He felt contentment and joy. Imagine that.... pure joy. Look at that handsome, happy face.
We're on a mission to find and offer many more opportunities of joy this summer. It may not fix the loneliness, but it can offer hope and joy, even if for a brief moment.
There are times in life when we feel lonely. Most of us have the ability to reach out to friends and family to pull us out of our funk. But imagine going over TWO years without spending any time with friends. Imagine never having a phone conversation with anyone besides your parents. Imagine believing you have these 4 great friends, but them not believing the same. Never including you, never reaching out to you. Never returning your text messages or answering your phone calls. Imagine how that fuels your loneliness and damages your confidence.... But imagine your brain works differently, so you cannot connect the events to the feelings. You have no idea why you feel this way. You so desperately want to "belong" and sought out, but no matter what you do, it doesn't happen. Now imagine being a parent to a child experiencing this. My heart is crushed. Yesterday was the last day of school. C came home feeling kind of bummed. It took him 6 hours to put the pieces together why he felt that way. He said "it's the last day of school and it might be the last time I ever see my friends". And he's right. We have made the choice to transfer him to a charter school next year.
As a parent I cannot watch him go through any more turmoil, physical assaults, verbal assaults, fear, and anger. I don't know how to respond, except with a hug and an "I love you". I want so badly to give him the opportunity to have a friend. Just one. He sees the other kids hanging out and making plans. He sees his younger brother with a best friend for almost a year, the two inseparable. He envies that, I can tell. He feels left out and that it's "unfair". He's right. The look on his face and low tones in his voice tear my heart. I have to fight back my cries until I am alone because I do not want him to feel like he cannot talk to me, because he makes me sad. Because it's not him that makes me feel that way. I don't want him to think he has to take care of me. This is not about me. This is about my kid, he deserves love and acceptance. But in a world of disrespectful kids and low tolerance and understanding for those with differences, it seems he doesn't have a chance.
I want to take it all away. I want to make people understand. I want kids to know he is not a bad person. He has challenges that are not typical. He can be loud and react in ways others believe to be over the top (it totally is to the rest of us, but to him it's not). He, like all of us, needs support, fun, and laughter. He is a great friend. He is loyal and he cares more than anything about your well being and safety.
We're on a mission to find and offer many more opportunities of joy this summer. It may not fix the loneliness, but it can offer hope and joy, even if for a brief moment.
