THOUGHTS & THINGS
Welcome to our blog - where we hope to share stories of the struggles & triumphs in this life of living & working with special needs individuals - a journey as families and partners in this effort to make an impact in our community...
Finally learning the difference between "meltdowns" & "tantrums"
Courtney has been stuck lately...stuck in her obstacles, anxieties, behaviors...and meltdowns. Meltdowns have been part of her life since she was little. Meltdowns in public can be especially trying...when she was younger, there would usually be a few looks by unknowing bystanders...you could tell they were thinking that she was just "throwing a fit". Now that she is a young adult, though, these meltdowns are even harder on everyone - Courtney, included. I've always struggled with when to institute consequences for behaviors, because so often these outbursts seem to be coming from pure frustration, sadness or sensory overload. It makes for guilt on my part and a lot of worry about how others will perceive her. With the help of behavioral specialists who have been in our home for a couple of months, now, I am finally learning the true difference between a meltdown and a tantrum - and my instincts were correct...these meltdowns have no element of manipulation - they are a reaction to what's going on and she has little, or no, control in that moment. But knowing that and knowing how to react are two different things. So...we are learning how to help her through these times...and she is learning how to help herself. All of the goals that have been set will take quite a while to reach, but that's okay. We'll spend as much time and energy as we need to make sure she is able to move forward bit by bit, becoming as safe, independent and happy as possible - because in the end, life will be better for all of us.
Looking back on something I wrote nearly 5 years ago in our journey through her autism...
When Courtney was much younger, 4 and 5, and we were still trying to find our way through her diagnosis, there was a lot of frustration on my part, on her part, in our family as a whole. Some days were just so, so difficult.
Every evening at bedtime I would have to lay down with her, just to get her to settle in enough to be able to go to sleep. And every evening, no matter how hard that day had been, I would feel her put her small hand in mine and say, “I love you mommy.” And in that instant, all the stress and frustration was gone, replaced with the strength I knew I would need the next day, to get up, face the challenges, and try to do my best.
Even now, at 19 years old, most days are still really hard. There are old challenges and there are new challenges. And some days I find myself wondering where I will find the strength to do this, and take care of her, for the rest of my life. And then she gives me a Mother’s Day card that she has written herself:
“You’re so kind and Beautiful Mommy I ever had in my whole wide world. You make me laugh and giggle too because I would never loose you your so nice and cool mommy and I really love you. I hope you can have an Fantastic mommy’s Day. Love Courtney, I will always be in your heart”
The grammar may not be just right, but I know exactly what she means to say and in that instant my world is a whole lot better and I have found my strength again.
Really appreciate the small things, because that is where the strength is.
The power of friendships...
I recently saw a video spotlighting the friendships of 2 high school football players and a young man with autism. It brought back memories of those who stepped up and befriended Courtney after we moved her to Templeton Middle School.
I think every parent is concerned about their child making, and keeping friends, but as a parent of a special needs child, worry and questions are on a nearly constant loop in your mind - is she fitting in, are students being her "friends" because a teacher told them to, is her autism wearing thin on them - and so on, and so on.
We arrived at Templeton Middle School just after the start of Courtney's 6th grade. While her aides did help facilitate friendships with "mainstream' students, this small group of girls began to hang out with her more and more throughout the school year. At one point I expressed to their mothers my thankfulness for their friendships with Courtney and that I understood it may be difficult given her autistic behaviors. I'll never forget their response - that their daughters truly enjoyed Courtney's company and that they were better people for knowing her. Their acceptance of her was absolute and their friendship continued on into high school and beyond.
Acceptance is truly a beautiful thing.
If you wish, you can view the video here: "Letter of Intent"
Some days are harder...
I was looking over Courtney's shoulder as she watched videos - happy videos - of women announcing to their families that they are pregnant. She was enthralled and smiling as each one scrolled by. After a few minutes I had to walk away - to keep my tears to myself and not let her see them. Because having a baby is NOT in the cards for her. She would not be able to handle a pregnancy, she cannot adequately care for a newborn, a toddler, a child. With all of the things we tell her she CAN do, this is not one of them. And she is a 24 year old woman with the same wants and dreams of other 24 year old women. And some of her (neurotypical) friends are getting married and having babies. And we have to tell her that this is NOT something she can do...in her best interest and her future child's best interest. So...I walk away, stand by the kitchen sink and let some tears fall...then I have to wipe them away and find my resolve to focus on what she CAN do. But some days that's harder than others.