I am pretty sure a million years worth of life jammed themselves into the last week. My brain is not even slightly able to keep up at the moment.
Someday, it will happen. Someday the cascade of diagnosis after diagnosis after diagnosis will stop. It seems like every time we turn around another label is being placed on one of the kiddos. This is not shocking given their ages but it can become super overwhelming. I have a love hate relationship with the labeling. On the plus side each new label gives us more tools and insight into what that particular kid is going through so we can be sure we are doing everything within our power to help them through it all. On the negative side the weight of the diagnosis and the pessimistic outlook therapists and doctors can paint can be hard to handle.
Two of the kids struggle with sensory issues already, Perry and Caleb, so I feel like I should see sensory trouble coming from a mile away. I started to be a little concerned when Oliver started climbing everything he could. I waited to be sure it was not just his excitement over a new skill before I let myself start thinking it was all sensory seeking. Wednesday I schedule Oliver to have an evaluation with an occupational therapist to go over those concerns and for him to check out our boy. I left the appointment a little dumbfounded. There are so many things I had written off as just Oliver antics-his constant moving and crazy silly things-that are actually all sensory driven behaviors. I left shocked by how much more severe it looks like Oliver’s Sensory Processing Disorder is than I had anticipated. The therapist also mentioned a need to keep an eye on things for possibly an ADHD diagnosis as he becomes old enough for that to be clear. So our little monkey boy is going to start once a week occupational therapy.
I had all of two hours to process this new information before the next therapy appointment and needed to be focused there. The next appointment was for Caleb’s Physical Therapy. Little did I know the day was about to become a complete swirl of chaos. Caleb started to have a meltdown as we were driving to the appointment. It was gradually increasing in intensity and I was focused on just getting us there, and checking us in on the computer so I could take him to the quiet room and calm him down. Sigh. The best laid plans. He was continuing to amp up his meltdown. I was trying to juggle a 50 pound screaming, squirming Caleb in one arm so I could check him into the computer system at the therapy place. A well meaning volunteer came over to show Caleb a shaking toy to try and distract him. That flipped things. It was too much for him and what was already a decent meltdown went into hyperdrive. Imagine an Autism Meltdown had a baby with a Panic Attack in a child who can’t communicate and that is what happened. Caleb ended up latching onto my face with a huge bite, that took two staff members to help me remove him from my face because he was so upset and unreachable. I got him off of me and I was not bleeding (much) so I tried all our usual methods of working through a meltdown. NOTHING WORKED. I eventually got him to stop thrashing but he did not completely calm down. We went through with the appointment but it did not go well. He fought everything we tried to get him to do and in the process I got bit about 20 more times (not an exaggeration) and lost a Caleb sized fistful of hair. My poor boy. I wish I could take that pain for him. He was having such a hard time. There was no obvious sign as to what set the whole thing off to begin with. The only guess I have is that he was in pain. His CMT causes nerve pain and he would not be able to communicate that to me any other way than getting upset. I think he then just became more and more overwhelmed and the shaking toy sent him into a tailspin. It was rough and we are working through it all with his therapists and doctors to try and help him through these hard times. I am thankful someone suggested Chewelry to me because it has been really helpful. He is still able to come to me when he needs to get the sensory input that biting provides him but I have something other than my flesh for him to chew on now.
I came home from the appointment with Caleb battered and bruised both physically and emotionally and he was spent as well. Unfortunately for Mama, things were not done being crazy for the day. Crystal told me when I got home about Damien’s antics for the day and his inability to listen to her pretty much at all. This was not a new problem. It was just another example of a problem we have been having. Damien has had a lot going on. Some of which I have some ideas and tactics to handle and some I was just at a loss. Key among them was the fact that Damien seems to lose his mind behaviorally anytime I cannot see him. If I am not around he does not listen to Crystal. The short time he was in Public School he did not follow any direction his teacher gave. In his therapies any time there is an expectation or limit placed on him he lashes out and his behaviors escalate. During this last week Damien also got to begin his animal assisted therapy at the Farm. Between all of the appointments and the therapist’s observations and the trend of behaviors- the picture is becoming clear. Damien has an Attachment Disorder. This is heartbreaking news as his parents because we know this is not something that there is an easy fix to and we also know that this means Damien lives in a more extreme state of constant fear than we had realized. Attachment Disorders can occur when children experience trauma and neglect at a young age. Treatments can be complicated and hard and it is not something he will just grow out of or that we can just cure by loving him to bits. I wish I could make this road easier for him to travel down but we will be there with him each step of the way. In the meantime I can wonder at how adorable his brain is. While at the farm we got to see some chickens who were clucking up a storm. I asked if he heard all the chickens making noise and he informed us that the chickens were all laughing because we were silly. Hold on to that wonder baby, it will get you through a lot of hard times.
The next morning when I woke Alizé up she was repeatedly trying to play Peek-A-Boo. “Hairs Mommy” “Peek Boo” “There is”. I was laughing at her antics and suddenly bowled over by how much progress her speech has made. A few months ago she could not even verbally ask for a cup and now she is able to play verbally, tell me hilarious stories, and have full conversations. She still uses a lot of approximations but people other than me and Tyler are able to understand her about 60-70% of the time. There is one hilarious part she is stuck on. She can say her own version of Kaitlyn, Damien, Perry, and Oliver. However, she refuses to call Caleb anything other than “brother”. I am not sure if Caleb is a combination of sounds she just cannot get out or if she just likes calling him brother. He does not respond to his name or much else consistently but I have seen him respond to her calling him “brother” so if it works for them I guess that is all that matters.
Perry has also had a lot of anxiety peeking through lately. Perry handles it in a different way. When Perry is scared, nervous, anxious, or being asked to do something too hard for him- he retreats into his inner world. It can be all but impossible to pull Perry into the here and now, he prefers to stay in the land of adventures and monsters and dinosaurs. All of his therapists have been working with us on this and it is not seeming to get any better. Perry is also going to start some counseling to help him work through those big emotions in real life instead of hiding from them in his imagination.
This last week brought a bittersweet time of love when Holly (my Bestie) and her family came to visit us. I cherished every second with them and loved watching the kids bond more with her, her partner, and their cousin. On top of all the love, fun, and time together I realized some things during their trip. I try hard to accept things as they come but I realized that I have not totally accepted the reality of where the kids are right now. In my head I had all these hostess ideas of places to show Holly and family, tours to give them, and ways to convince Si (Holly already loves it) that they should move here. After our tour of the Downtown Market and the Downtown area I realized things could not go as I envisioned. The trip downtown was not a disaster but it was not easy for the kids in ways I had not prepared for, although we powered through it made me realize I have not accepted the limitations we have as a family for family events. I am getting there. I have realized we cannot go out to eat as a family. I have realized we can attend almost no parties. I have not accepted that I cannot come up with solutions to this. I have not accepted that it is not my fault. I have not accepted that it is ok to say “I am sorry but we cannot attend”.
Through the good, the bad, and the ugly of this week we made it through. I am so thankful that we have each other on this journey.