by Kami | Mar 26, 2019 | All Essential, Jeffrey
“We get by with a little help from our friends”-The Beatles
Dan shared his thoughts on Jeffrey’s sports night experience last week and now it is my turn.
The ENTIRE event two words kept coming into my thoughts…HELPING HANDS. If you look at some of the pictures you can see all the times I captured a fellow student or faculty member literally touching Jeffrey and guiding him through an activity.
It seems so simple, yet it is so profound. They were using skills that Jeffrey’s therapists taught us through years of therapy, to not only give him verbal cues but to also use touch as an additional stimuli to reinforce behaviors or encourage action. Jeffrey tends to get “stuck” (motor planning issues) and simple verbal cues are impossible for him to comprehend much less put into action. When he is stuck we can become incredibly frustrated, “come on…let’s go…MOVE…”, but this frustration only makes his “stuckness” worse, he literally becomes frozen and our frustrations rise. We begin to circle the drain into the abyss of ineffective parenting and general family unhappiness, we all feel it and it is awful.
But if we remember to do the opposite of our impulses, to speak gently and simply, and to use the power of touch to gently move him into action-that is where the magic happens. Here is where we see the “click”, we can tell he is hearing and processing what we are asking him to do. It all starts with us and our toolset, and the students and faculty that night knew exactly what to do to support Jeffrey. Maybe they are trained, or maybe it was innate, but for me it was an act of pure love and humanity towards our son. One I will never forget!
~Kami
by Dan | Mar 5, 2019 | All Essential, Jeffrey
The Junior Prom was last Friday, a rite of passage for all high schoolers. But it was an event that we NEVER thought he’d be able to go to. So much has changed…
I can remember when we first realized that something was different. He couldn’t hold his head up, was really undersized, and didn’t react like Megan did. But each kid is different, I told myself.
Then he was diagnosed hearing impaired and global developmental delayed. My first thought was, “What will his life be like?” I wondered about school, friends, his future. And those worries were realized when he was young. There were a lot of looks, stares, and laughs. He wanted to play with the other kids, but there were no play dates, no parties, no sleepovers.
He had friends from his class, the small circle of other autistic children who were in the same boat. They were invited to each other’s birthday parties, but that was basically it. So many times we had to comfort Jeffrey when Megan or Christian had something planned with their friends and weren’t home and he didn’t understand why he couldn’t do those things.
Things began to change once he got to high school. His smile and personality began to infect PHS. And something is different about today’s high schoolers – they see the big picture so much better than when I was there. Kids began to embrace Jeffrey. We couldn’t go anywhere without someone seeing him, yelling his name, or giving him a high-five or a hug. Megan became known as “Jeffrey’s sister” to a lot of people!
But there was still something that wasn’t complete to him – the dances. In middle school, Jeffrey attended all of the dances with his buddy Frederick and was carefully watched by his teachers and aides. He attended the freshman formal with Frederick and their dates….Megan and her friend Caroline. He went to the sophomore dance with his autistic friend whose mother was a chaperone. Even though he was at the event, there was still a watchful eye on him at all times making sure nothing went wrong.
And that leads us back to Friday night. The first time in his life that he attended something of this magnitude without a family member or other adult specifically designated to look out for him. And the best part about it was we weren’t even worried about him.
What a feeling to have after 16 years of constantly wondering if he was alright – not only safe but also having a good time with his peers.
His date was not a family member or someone from his small circle of autistic friends, but a wonderful young lady from his “Best Buddies” club who cares for Jeffrey and has his best interests at heart.
As I reflect on this night a few days later, I can truly say that this was the best night of Jeffrey’s life, and we are so blessed to be able to share this with all of you.
~Dan
by Dan | Sep 12, 2018 | All Essential, Jeffrey
Each morning we seem to hold our breath. We never know how it’s going to go. And the thing that is really tough is that it can change very quickly. If you have no idea what I’m talking about, it’s mornings with Jeffrey. Our morning starts out with him now getting woken up with his watch. We gingerly walk into the bathroom to greet him as he prepares for his shower. Will he hug us and smile? Will he grumpily grunt and give us the cold shoulder? But it’s the next part that keeps us guessing – when he comes to breakfast. Most days he will come down and greet us both with a huge smile and hug, sits down for breakfast, and completes his morning routine. Today was NOT one of those days. He was pleasant enough before the shower, but after he was in rare form. Didn’t want to talk, didn’t want to eat, didn’t want anything from us. And that’s why we have been so blessed by these oils. Before the oils, there were days when he would continue this behavior, arguing and fighting his way through EVERY step of the morning – brushing teeth, getting shoes on, putting jacket and backpack on, walking to the bus. It got so bad one time that our neighbor asked from her front door if we needed any help because he was screaming at me so loudly.
But the more we have learned about the benefits of essential oils, the easier it has become for us to ‘break’ him out of his funk. Now he has been taking Life Long Vitality and getting frankincense and helichrysum for his migraines, but Kami learned something at convention that she whipped up. She added some black pepper and a new oil, Copaiba, to his frankincense and helichrysum, rolled it on the back of his neck, and the effect was unbelievable! Before he was finished with his waffles, he was smiling, laughing, talking like the Jeffrey we all love to be around. He hugged both Kami and me, and strutted himself to his bus without any issues.
We know that there will be more mornings like this in the future, but we also know that we are now armed with the tools to help our man-child deal with these emotions when they pop up. And that will help all of us breath easier.
by Kami | Sep 7, 2017 | All Essential, Jeffrey, Life
We have a chronically ill child, nothing life-threatening, but horrible nonetheless. Chronic illness changes you. As a parent you are scared and worried but also know that it could be so much worse. Almost to the point that you don’t want to complain. When Jeffrey would need to go to the hospital I would feel guilty being upset as I saw all of the other kids that were obviously fighting more serious battles. But internally there is so much fear and anger. No parent wants their child to suffer, ever. It breaks you into a million pieces on the inside. Chronic illness does that to you over and over and over. Then you just have to get up the next day and move forward. Due to the nature of his illness, it is cyclic (comes and goes), we started to live on edge… when will it happen again? Can we go away? Will it ruin everything?
Then it would happen and Dan and I would go into high gear. We jokingly called it “DEFCON 1” because we needed to laugh during the stress. Then it would be over and we needed to change gears and get back to life, but the emotions don’t go away so easily, the anger, fear, frustration and grief stay. So how do you process it all when you have no control and have no idea how long of a reprieve your precious child will receive? For us, it just takes time. We accepted over time that this was our new normal… But that in and of itself is sad. The acceptance that our child would needlessly suffer these bouts of unrelenting nausea and vomiting. Why? Why us? Why him? Wasn’t his autism, hearing loss, intellectual disability and global developmental delay enough?
Here is the beauty of Jeffrey, he is the strongest person I know. We have gained our strength through him, through his resilience and graciously through his ability to live entirely in the present moment. It is a sight to behold, to watch him just live, not dwell on the hand he has been dealt. He has never said “why me”, not once! Isn’t that amazing?? If it was me I would be wallowing in self-pity and he doesn’t, not ever. This is why I always say I wouldn’t change Jeffrey ever. Sure I wish his life were easier because I want that for all of my children but the lessons I have learned from Jeffrey are not lessons I could have learned without him.
by Dan | Jan 1, 2017 | Jeffrey, Life
Bowl week elicits different emotions in our house. For Kami, it’s “UGH – more football!” But for me, it brings back some great memories. Let’s go back to 2005. At this time in our house, things were a little crazy. Megan was not being the most cooperative kindergartner, Kami was pregnant with Christian, and Jeffrey was 3, but he wasn’t your typical three year old – Jeffrey wasn’t talking yet. Grunting, crying, screaming, pointing. No words. He could understand us and could communicate yes and no, but no words. For those of you who didn’t know us then, Jeffrey was deaf when he was born, profound in both ears. When he was three, he entered a pre-school for children with hearing loss where he was being taught sign language and at this time he was beginning to make progress with his signing.
Also, Jeffrey was still really attached to his mom more than me. We hadn’t yet found that ‘something’ to bond us. So it was during bowl week that something really cool happened. I love football, all kinds. Even those really crappy bowl games that no one cares about. I can’t remember the game or the teams, I only remember what happened when the game went to commercial. I hadn’t even noticed that Jeffrey was watching the television, but every time there was a break in the action, he would turn, look at me, and begin to scream. Because he wasn’t talking, I really had no idea what was happening. It didn’t take long to realize what he was upset about because as soon as the game came back on, he would stand right in front of the TV, jump up and down, and start making ‘happy’ noises. It was so cool. I started to experiment by changing the channels, and each time I did he would turn and look at me like, “Come on Dad!!” For the rest of the week, I watched more football than I had ever watched in my life.
What a joyous feeling to finally have a connection with my boy! Since that day we have spent countless hours watching football together. At first, it was ok that he stood by the tv because he was too short to block my view. But now….he’s bigger than me so he must sit. It also didn’t take him long to figure out the “ON-Demand” features for the NFL Network and BIG 10 Network highlights. Soon thereafter he was able to navigate YouTube to see highlights of past games, big hits, and anything in between.
It didn’t take long for me to indoctrinate him into Eagle Nation, which has become his favorite team. He has jerseys, hats, socks, jackets. You name it. His favorite movies were the 10 Greatest Eagles Games given to him by his best friend Frederick. One of my favorite moments was the first time I took him to an Eagles game when he was 6. The organization was awesome and allowed me to take him onto the field for pre-game warmups. To see his eyes widen as we walked out of the tunnel was something I will never forget.
Even though we don’t watch every football game together anymore, (he’s too busy playing guitar lately) I will always look back fondly to that week as the time Jeffrey and I became more than father/son, we became football buddies.
