Here’s a break from the kink and some insights into family life which I have shared from time to time.
J graduates from high school in a few weeks. I’ve shared before that he has some special needs. We have lived our lives assuming he would have to live with us our entire life, unable to be independent. His condition has a wide spectrum of issues and some with his condition can be fully independent and some can not. And while development was not expected to be linear, everything pointed to him needing life long assistance. A life of all kinds of therapies was producing steady and painfully incremental gains. Then, Bam!
About 3-4 years ago those gains began to grow, and grow exponentially. Physically, cognitively, emotionally. I credit the three M’s (technically, Mike came up with the three M’s, but I humbling accept them as fact!). Those are, medicine, maturity, and mom! Or the way I say, “Mom, maturity, medicine.” Hell yes, I will take top billing for his progress!
As for medicine, I don’t just mean prescription meds, I mean the entire medical field, from therapies to prescriptions. And while maturity was likely to always evolve on its own, he went from a lot of behaviors that were a good 5-6 years behind his age to pretty close to age-appropriate behaviors. I’d say he is still a couple of years behind, but that difference matters less when you are talking age 16 behaviors at age 18 compared to age 6 behaviors at age 12.
It wasn’t until the beginning of this year that we started leaving him alone at home. Of course, we always made sure John and Donna (our neighbors, I think you’ve heard of them), were home, aware, and available in case something came up.
Some of the concern was also physical. He can lose his balance very easily and has low muscle tone, so the risk of falling was always high. If he trips over anything, he would always fall and fall awkwardly and hard. But his strength has improved immensely along with his balance. He still has issues, but nothing like before.
Our thinking evolved from the idea of him always being at home to perhaps being able to live in the right group setting at some point. Well, now we are taking that thinking a bit further.
J has been spending a lot of time at T1’s and E’s farm. He loves caring for the animals and is a big help around the farm. It has got to the point that right after school on Friday’s we almost always drive J to the farm for the weekend. For sure every other weekend and sometimes back-to-back weekends.
GULP! MOVING OUT??
T1 and E came to us with an idea. They wouldn’t mind adding a few more animals to the farm. Maybe some goats, or more beehives, or whatever. But they have to balance their time commitments with their regular full-time jobs. They were thinking, maybe they get more animals and J comes to live with them to help out. Initially, in their house, but eventually, we could build him his own place on the property. There is plenty of room.
The idea has merit, but I am not ready to jump into it. I worry that he would be an imposition. T1 and E are adjusting to married life and now this kid with unique needs requires their attention. That’s a lot to take on. T1 has always adored J and even though they are eleven years apart, T1 has always gone out of his way to stay close and connected to him. And E is amazing with him as she is just an amazing person. Still, that’s a lot for a couple to take on. And once they have kids, then what? Yep. This would only work long term if J continues to develop and becomes more independent.
The vibe on the farm is perfect for J. T1 and E are easy going, the farm is quiet, and J can be naked all the time. I can’t understate how nudism has also helped him. He has always had tactile issues, especially with clothing. Even before we adopted nudism, around the house he would often wear an oversized t-shirt and loose underwear, nothing else. It never dawned on me even that created some anxiety in him. We saw an immediate decrease in anxiety when we ditched the textile norms around the house.
For now we decided we can ease towards that direction and see how it goes. After school is out, we told him he can spend a full month at their place (with frequent visits from me). Then he can come home and we can talk when his next farm visit will be. We have not told him of the idea of living there and likely never will. He doesn’t do well with “maybe” but does very well with, “this is just how it is.” Very black and white, no gray.
In a perfect scenario, I envision that we can get a mobile home or a small one-bedroom home built on the property for him. I also envision moving closer to them. 3-hour drive is just a bit too far. I need to be closer to J. I am not looking to cut those apron strings just yet, but I am willing to consider a long tether. Just not too long.
WHAT OF TTWD?
While my focus is on what it means for J and making sure he is set up with the greatest chances for success, it does make the three of us think what it means for us. (me, Mike, Kayla). We’ve already got a little taste of this. Part of increased adventures this year has been because J has spent a lot of weekends away. In the past, it wasn’t uncommon for me or for Kayla to stay behind with J. All three of us going out together was a treat.
It’s not like it never happened. Since J was born my parents and sisters made it point to coordinate at least one night a week for J to spend with them. It was their way of giving me and Mike some respite. And there were the two weeks during the summer that he would stay with my parents – which led to our Immersions. Hey, when the kids are away, the adults shall play! But still, having him spend almost every other weekend this year with T1 has been amazing. No doubt it is part of what allowed us to increase our adult play opportunities without having to leave me or Kayla out to stay with J.
While our kink is never the priority and has no bearing on our decisions regarding J, I do wonder what it means for TTWD. No more logistical issues with a spanking such as a sudden and discreet trip to the bedroom. No more, “Hey, we need to wrap this up, J will be home soon.” There has been so much play and punishments that have been cut short or modified. Such is TTWD when there are kids in the house.
WHAT OF DAY TO DAY LIVING?
And not just the kink, but just life in general. If any of you have children with any types of unique needs, you know how emotionally and physically draining it can be. It’s been 18 years of an intense and constant focus.
Not just on J’s immediate needs, but a focus on all the trip-wires, boobytraps, and time bombs that surrounded him. Those things that would trigger anxiety or injury or obsession that if identified quickly, I could defuse without him noticing or at least quickly redirect. Mike and I developed a sixth sense about it, like Jason Bourne casing a room and in an instant assessing all the threats and exit strategies. That’s been my life at least since he was 4. 14 years!
MINI RANT RE RAISING A SPECIAL NEEDS CHILD
And just to be clear, we were not that way with T1 or T2. I believe normally developing children need to deal with age-appropriate adversity. It’s part of developing the skills you need as an adult.
But when your child is not normally developing, when adversity creates a major set back in their development, in their health (central adrenal insufficiency), in their happiness, in the happiness of everyone around them, that gnaws on them like a parasite, draining them and everyone around them – then what? You do all you can to keep adversity at bay, allowing it only in the tiniest of doses, in the most controlled setting possible. This positions the child to successfully overcome it and truly learn from it. Treat them like a normally developing child and their life will be hell, as will the life of everyone around them.
While J has come a long way, I still have lost all concept of what it is like to suddenly have that sixth sense turned off for more than a breath or two. The signs are now pointing to a chance that he indeed can thrive fairly independently. I know I am going to struggle to be an empty-nester. As long as I know J is thriving, it’s a struggle I can’t wait to take on. We shall see.
8 thoughts on “319. Empty nest?”
You are an amazing Mom and you’re very welcome.🌹!
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The way you and Mike have met the many challenges of raising a special needs child is remarkable, especially Your dedication. Obviously the many years of home schooling and constant efforts to meet J’s many needs gives hope to others facing similar challenges and the draining responsibilities it creates. J’s progress is a testament to your love for him and yours and Mike’s devotion to each other and family. T1’s and E’s farm sounds like the perfect place for J to continue to flourish and evolve. Hope to hear in the future that J has his own home there and is joyfully continuing to grow in his independence. Congratulations to both J and Kayla upon their graduations. Wishing you all the best.
Thank you so much for those kind words. There were many challenges indeed, the greatest of which is to have learned to set aside all our natural parental instincts in raising normally developing children, and instead act in ways that provided J with the best chances for success in navigating the moment. Breaking things down into minute steps, allowing him to conquer each tiny step at his pace can challenge anyone’s patience, but we kept reminding ourselves no matter how hard it must be for us, imagine how hard it is for him. There were so many times we would stumble on something that works and simply had to say, “Whatever works!” even if it seems to defy logic or normal parental instincts. And you’re right, the farm does sound perfect for him at some point. Thanks again for warming my heart with your words of support and acknowledgment!
I have special needs kids. My son will graduate from high school this year. There was a time when we wondered if that would happen but it’s now just around the corner. I believe he will be a contributing part of society!! That’s what makes it all worthwhile!
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When the last of the kids had graduated and was contemplating going to college and living on campus, we were giddy and drunk with anticipation while being very much relieved because after all the years of raising them, molding them (and them getting into much trouble), it was time for them to get out there and prove to themselves that they were ready for the world. When each of them announced they were leaving, I guess they thought we were the worst people in the world because we even helped them pack and with great enthusiasm and the three of us would say, “One down! Next!”
And when the last of the “Fickle Five” as we called them got into the wind, we knew a few of them would be back at some point but the biggest thing we didn’t think of was what we were going to do with no kids; we realized that the last of a major part of our daily routine has just walked out of the door…
And we had no idea what to do with ourselves… for a couple of days, anyway.
My daughter got pregnant too soon and had a child who had a rare metabolic disorder that kept all of us on our toes, making us get certified in CPR, learning to use provided medical equipment usually seen in emergency rooms, creating special batches of formula that would keep him alive and kinda tying us down at home and not straying too far in case he needed to be rushed to a hospital. When she got married and moved out, we hadn’t realized how much of a mental and emotional strain his condition put us under. The doctors didn’t expect him to live to be a year old: He’s 27 today and doing better than anyone expected him to, graduating from high school and even excelling in ROTC.
But, yeah, now that the nest was empty, we could really focus on our tripartite relationship without nosy kids asking, “What are y’all doing in there with the door locked?”
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I have a niece with special needs, a very rare condition (kabuki syndrome) who may never be able to live independently. I know my brother and his wife have planned for that eventuality. For myself I try not to look too far ahead for her. When she was just 4 weeks old they had decided she would never walk or talk. She’s now 3 and well, she walks, talks, runs and jumps!! I hope J is able to live in such a way that suits him and makes him happy – and you 😊
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