You have probably seen her at some point in your life. Maybe you reached out or maybe you avoided her, uncomfortable with all the emotions she was losing control over. She is the woman weeping in the waiting room, trying to hide her tears with her head down, avoiding eye contact.
Today that woman was me. The tears are still coming every few minutes, unannounced and unwelcome and yet there they are-flowing down my cheeks.
Monday’s are always a bit chaotic in our house. Damien, Perry, Caleb, and Oliver have therapy and Alizé usually tags along and hangs out in the waiting room. Therapy starts at 8AM so I have to prep the night before and get up extra early to make sure things go smoothly.
We started this Monday off crazy. I overslept by almost two hours. That meant I never did my hair, I think I brushed my teeth and I generally looked a mess. Thankfully I had laid out all the kids’ clothes the night before and everyone was freshly bathed and easy to get ready. Except Alizé’s skirt did not fit and Caleb fought putting on his shoes because he is still not sure about these new braces. The kids got dry cereal in snack cups for breakfast as we raced out the door.
It was INSANITY.
And then we got to the Therapy Office….
For the last few weeks Caleb has really been struggling. As a general rule he loves his therapists and thinks they are so much fun. He needs something lately and he cannot tell us and both us and the therapists have yet to figure it out. This means some days he goes back and does a great job at therapy and some days within minutes he is back in the waiting room clinging to me and sobbing so hard he is on the verge of making himself ill.
Today was not one of our good days. We tried it all. The therapist tried numerous different tactics and techniques. I even tried taking his pants off and letting him try life in just his diaper since he loves being naked. We tried calming exercises, we tried deep pressure, we tried everything under the sun. Caleb was still flailing in my lap clearly upset and unable to communicate with us what he needed. There are few feelings as helpless as watching your child struggle and know he is trying to tell you why but he is not able to communicate it.
Then it was time for a therapist switch and another one came out to give it a try. She too was trying every tactic we could come up with. As I started to thank her for the hard work and for understanding where we are without me having to explain anything, I broke. The last week, months, and years bowled me over and I started crying.
Last week was a doozy. We had all the usual- kids therapies, working through things that are hard, adulthood, bills, housework, etc. We also had two big appointments, one for Damien and one for Caleb.
Damien has been struggling a lot lately. Lots of anxiety, trauma induced behaviors, destructive behaviors, acting out, fine motor struggles, sensory overload, impulsive behaviors and the like. Damien had his first week of Occupational Therapy to start addressing these concerns from the foundation up, although it is already showing a difference he was struggling with the new place and people. He also began seeing a counselor to help from the top down with the same issues.
This sounds like nothing but good things, however it is yet another battle one of our children is fighting that we cannot fix. We cannot undo the trauma he has suffered and we cannot wave a wand and change the way his body processes the world around him to make it easier. All we can do is love him and help him find the tools he needs to win the war.
We also had a four hour appointment for Caleb to have the Autism Diagnostic Observation Schedule assessment. This was a four hour long assessment with three different specialist at the children’s hospital. Shortly after we arrived Caleb managed to pee through his pants so we were the family going from office to office in the hospital with the pantless boy. Ha-ha. He loved that part. He did amazing and was so cooperative with the testing, I was amazed.
The tests revealed what we already suspected, Caleb does have Autism. As you may or may not know, Autism is a spectrum of disorders ranging from mild to severe. Caleb falls on the severe end of the spectrum. Hearing this officially and hearing that it is unlikely he will ever be able to live independently was hard. Harder than I imagined it would be, much like when we got his CMT diagnosis (see No More Denial). Another thing we learned during the testing is that all of the specialist agreed that they saw signs of Cerebral Palsy as well as the Autism and the CMT.
I sobbed, ugly hyperventilating sobbed, on the drive home from the appointment.
I cannot think of a time I have felt more helpless. Our children are amazing, they are my heroes in every sense of the word. They have all been handed such hard hands and have to fight so hard for what comes so easily to so many others. Getting so many new diagnoses and information over such a short time feels like it is just piling up and getting harder for them and there is so little in our control.
We cannot “fix” it for them. We cannot make it suddenly easy.
All of this combined today while Caleb was completely melting down and I could not help him enough that he could finish therapy. Then I wanted to let the therapist know how much I appreciate that she gets when it is hard without me having to explain myself and I saw how deeply she feels the pain for our babies and in that moment of feeling so understood- it just broke the dam of my emotions.
It is all hard but it is so wonderful to know I do not have to explain it, I do not have to qualify my emotions, I do not have to explain the kids – She just got it. Not only does she get it but she is there in the midst of this hard work the kids are doing and she is walking through it with our entire family.
That is rare. There are people who care but do not get it. There are people who get it but are not emotionally invested. There are people who care and who get it but are not in the middle of it. Rarely are there people who care, who get it, and who are right there in the middle of the mud and the muck with us.
We will tackle these new obstacles as a family and I am sure, as usual, our kiddos with defy all the odds laid before them. I will be picking myself up to fight with them, cheer them on and do everything in my power to help them in their daily battles. For today though the emotions are in control and I am going to weep for all the things I cannot do for them and all the battles we have coming.