Many years ago I faithfully attended a support group for parents that had children with medical needs or complexities. The group was incredible. It caught a wide range of families from chrones disease… to pulmonary hypertension… to Ollie. We were different, yet the same. We all carried the heavy weight of someone’s fragile and complex life on our shoulders and in our hearts.
One night at the group we welcomed a grief counselor to speak to us. She shared the process of grief:
And as you can see… it had the 5 elements: Shock, Anger, Bargaining, Depression and Acceptance. So far so good. That made sense. Then she flipped over her page….
“The grief cycle for a parent with a special needs child just keeps going,” she said.
It was pretty simple. You just experience it over and over again….
A few weeks ago I was in the throes of making sure Ollie was on a solid educational track. The IEP team and I hadn’t met for a few months and I wanted to get a handle on where we were at. I observed and met with everyone. And everything… I mean EVERYTHING was on a good track!
I was loving all the specialists and what they had planned for my little guy.
That is, until his Special Ed teacher (whom I adore) told me that the Adaptive PE teacher (whom we didn’t know) had decided that Ollie would be safest in his wheelchair for PE. Despite the fact that he had been walking and only using his chair when fatigued, Ollie would need to remain belted in during PE.
What? Ollie had always been able to choose which mode he preferred at the moment.
I smiled and politely asked what the next steps would be to argue that decision. And being as awesome as he is, the Special Ed teacher called a meeting with all parties involved for the very next Monday.
We met and we openly disagreed about what was safe and what wasn’t. I was shocked considering Ollie has a personal aide that can assist with stabilizing and walking. Him and the aide work really well together. I fought respectfully and sobbed with a friend at my side. I had lost the battle. My son, who has been walking for 5 months (even learning to trot) was going to have to watch his peers run around him, while sitting in his wheelchair. I walked out of the meeting with a plan to go and observe the next few PE classes. And I figured I’d call another meeting after I knew exactly what I was talking about.
Four days later I go and observe. The Adaptive PE Teacher is there and she’s working with Ollie’s support staff on making modifications. I just observe. Towards the end of class I ask her “Have you been able to see Ollie walk? I know that Ollie’s aide supports him a lot more than I usually do at home. Have you seen him walk independently?”
And she says “No, I haven’t been able to see that yet.”
So after class we go outside and I show her all that Ollie can do. I have him walk on the sidewalk and on the uneven grass. He is killin’ it. I then ask him to sit down and stand up, all on his own. He accomplishes all of this with no qualms.
The Adaptive PE teacher says “Thanks for showing me. I didn’t realize he was that certain on his feet.”
After only a half an hour she’s agreed to everything I had asked for. She agreed that he nor the other children were not in any more danger with him out of his chair. At times, he may need to be in his chair, but she could amost say that it was 100% up to him.
So in that first observation, I walk out of there with everything I wanted. Everything is resolved. And I’m happy for Ollie. And I’m FURIOUS. I’m DEFEATED. I’m SAD. I don’t know what to think. I wander around aimlessly for the next week. Literally aimlessly. My family is lucky that I fed them 3 meals every day! And no one had to sit in a dirty diaper for an extended period of time.
What is going on?! Who am I? Where is my life going? Why does it have to be this hard? Why do I have to make sure every “T” is crossed and every “I” is dotted at all times in order for Ollie to have his basic needs met?! Why do I always have to fight for what I consider normal things?!
Two weeks pass…
Oh. My. Gosh.
My grief cycle is real. And I had forgotten for a while that it existed. But I finally realize that I was in the trenches of depression and anger.
For parents with special needs kids it could be a number of things that throw them back into the cycle: a new diagnosis, a surgery, a kid making fun of their kid, a teacher having a concern, realizing their kid isn’t involved like other kids…. The list is truly endless.
I want to share this in case you know someone or you are that someone that has been given this challenge in life. The pain goes deep. The joy goes deeper. But when the rains come and you or your friend is feeling flooded by the storm, don’t panic. Don’t try to fix it. Wait. Breathe deep. Cry. Shout. Go THROUGH it. Don’t shy away from it. Call a friend. You’ll come out soon enough.
If you’re a faithful reader to this blog… I can almost guarantee that if in the future, you notice I’ve skipped a few weeks (and I’m not traveling)…I’m in the middle of a storm. I had always heard how important it is to have some posts ready for when you don’t feel like writing. And that would have been helpful this last time around!
However… I like the honesty that a few weeks have provided. I couldn’t write when I was angry or depressed. I simply couldn’t. I have my limits.
And until I’m in heaven one day I’ll continue to experience my limits. And they’re ok. I don’t know that I have any deep, amazing insight to share today. I suppose I just want to give a voice to the broken hearted, the downtrodden and the tired parents that are raising special people. Their grief cycle is different. It’s exhausting and persistent.
Love them. Sit with them. Offer to help where you can. Hopefully they’ll come back to acceptance and feel joy again. At least with your help, they won’t be alone.
I speak from experience, that the 3 weeks I spent depressed and in a hole… the only way I came back out was through love and rest. I felt loved and seen and that healed. And now here I can sit and write… and mother… and change diapers…. and keep going.
WE can do it. Send a friend a little love today folks…
Hugs to each of you. I wish you so much joy.
Disclaimer: This post is meant to bring light to dark places for Special Needs Families. Nothing more. All parties involved were doing the very best job they could, given their role and responsibilities. I share this carefully and with respect for the teachers involved. I love you and thank you for working with us!