Forever Young

The year was 1975 in Disney World/Magic Kingdom with my friend, Irene. It is one of my fondest childhood memories, a truly amazing adventure that I will never forget! We had such a good time and I recall not wanting to leave the happiest place on earth- at all! There was something indeed magical about Disney World that encouraged child-like wonder and joy at every turn. Jim and I are so thrilled that our Brian will experience this same magic for the very first time at Disney World starting on Monday for 5 days. I’m so excited, that I’ve barely been able to sleep this week, it’s like waiting for Christmas morning to come! I feel like an overgrown kid who can hardly contain herself from the anticipation of the adventures that lie ahead. I hope Brian will have the best time of his life! Although Brian can’t tell us in words, I am sure his actions, behavior, and child-like joy will speak volumes and it will all be good!

Speaking of magic, if I had a magic wand, I would immediately eradicate Brian’s disabilities, no doubt about it! His life and ours would be much less complicated on so many levels.. Believe me, I have searched for this wand on numerous occasions- but- there is one thing that I would NEVER change about Brian, and something that I wish to aspire to myself, and that is to have more of that sense of genuine, child-like wonder! You know, that joy, curiosity, and honesty that we ourselves experienced as children, but somehow these things have been replaced over the years with skepticism, mistrust, and dissatisfaction. How did we adults ever become so jaded?

There is no doubt that our life experiences have shaped our attitudes, behaviors, and responses. Adversities and challenges of all kinds have happened or will happen to everyone one of us. These setbacks can be temporary, or permanent, and over time, can threaten to rob us of joy, perspective, and hope. It’s human to feel frustrated, scared, angry, and discouraged when we are slammed by challenges. I certainly have felt many times all of the aforementioned and have no doubt I will again in the future. But I don’t want to remain “stuck” in the details of life events that I can’t change- it doesn’t serve any purpose. It’s important to acknowledge and call things for what they are, but then there is a time to let things go and move on. So, I look to Brian for child-like guidance in such matters, and like very much what I see!

The ” World According To Brian” is a place where he takes people and things at face-value. It is a scary place, (because literally every new situation or person is unfamiliar ), but once the initial transition is made, there is a genuine appreciation and joy that Brian experiences with time and repetition. It really doesn’t take much to make Brian happy at all! His social interactions with others are a highlight for him- without words, he communicates his joy and wants so much to engage. Brian also vocalizes his sheer delight when we read several bedtime stories to him nightly- you would think that he just won the lottery; he is so happy with his books! Of course, music, goldfish crackers, and ANYTHING related to the movie “Frozen”, especially “Olaf”, guarantees the most gleeful response and joy ever seen by mankind! Such simple, yet powerful, appreciation of the little things in life is a good reminder for me.

This will also be Brian’s first time on an airplane, and we are hoping that this major transition goes smoothly. This is a trip that we have planned and anticipated for a long time and very much look forward to! There will be numerous opportunities for child-like wonder at Disney World , not only for Brian, but also for my husband and I . While we will certainly record this momentous occasion through numerous pictures, I plan to be mindful of every experience, looking through my son’s eyes, and soak in each moment of his pure wonder and joy… It will also be an opportunity to go back to 1975 and be a kid all over again, unjaded, living in the moment, and allowing the fun experiences to bring me back to my own childhood. Let the magic begin and long may it remain afterwards in the heart and soul…❤️❤️

Thanks for reading! 😊

I’m Not Always OK – The Dilemma Of Special Needs Parenting and Depression

Pay no attention to the woman in the bed in a fetal position with a pillow over her head in the middle of the day. She probably just had a bad night’s sleep. It happens to all of us now and again, no big deal. Everyone also gets the blues, hey, it’s a part of life, and you move on….

Perhaps it’s more than just a of case of somnolence caused by a lack of sleep from the night before, especially when this pattern has been going on for several days, months, or even years. Activities that were once pleasurable mean nothing now . Isolation and retreat are the norm and provide a safe haven from interacting with others, lest they find out the truth about how and why this unwanted guest, aka: depression, has taken such a foothold in one’s life. It’s just too painful to discuss these details and nothing is going to change anyway…

The previous excerpt is based on a discussion that I had with another special needs parent a few months ago and this is exactly how she is feeling about her life at the moment with her child. She gave me permission to share these details in this forum, with the hope of shedding more light on a very important/personal issue, but wished to remain anonymous. She is a professional person and a single parent. You would never know how severely depressed she is, as she carries herself extremely well and is quite the power house in all areas of her life. However, the many years of raising her disabled child have really begun to take its toll. So many issues that will never end.. Losing hope and doesn’t care about herself or life, yet somehow very recently found the strength within to do something for herself, for the sake of her child. She is finally getting the professional help that she needs and hopes that both counseling and medication can help. She keeps asking herself why it took so long to reach these conclusions..

I so admire her courage and honesty in bringing up a topic that is still taboo and considered to be a weakness by some. Nothing could be further from the truth! But the stigma of a mental disorder in a “perfect” world can be hard to overcome..Depression is one of those topics that is avoided, minimized, and ignored. It doesn’t go well with accomplishments and accolades and generally makes people feel very uncomfortable. Yet, most of us will experience some form of it in our lives at some point. Isn’t it better to be aware of it? Special needs parents are especially susceptible and it makes perfect sense as to why: we love our children so much and take tremendous pride in who they are and just want to see them happy. Our kids are pure, beautiful souls who love unconditionally: we and the rest of the world can learn so much from our kids! But we underestimate the toll that special parenting takes on us emotionally, physically, mentally, and spiritually. As a matter of fact, we are so consumed by our child’s every need after so many years, that there is simply no time to tune into what is REALLY going on with OURSELVES, until BOOM- we hit the proverbial wall!

I have been a periodic purveyor of professional counseling services myself during difficult times in my life, including when Brian was a little boy and I was having a very hard time coping with his needs. I confess I did not feel comfortable discussing this with others at the time; I felt I would have been judged. Ultimately, the sage advice and support I received was helpful; it gave me perspective, and helped me to move on with my life. It doesn’t mean that I have all of the answers figured out for this special journey. As a matter of fact, I am often unsure and struggle with many decisions. I remind myself that I have choices and resources and am never alone. I also know where to go to get answers now if I need to. Sometimes that will be through close friends and family, myself, or a professional- and that’s OK! I still want to live my best life, even when I’m in emotional pain. I want to be present in the moment and experience all that it has to offer, something that I continue to work on every single day…

OK, so the cat is now out of the bag! I hope and pray that my friend’s testimony, as well as my own, may be of help to some special parent who may be struggling greatly with depression at the moment… Please know you are in very good company, there are resources, you are NOT alone, and there is always hope, the very thing that we provide daily for our kids.. It is now YOUR TURN to receive the love and support that you so freely give. ❤️❤️❤️

Until next time, thanks so much for reading! 😊

Get A Job!!

tBrian and I did our weekly food shopping yesterday at our local supermarket, a good way to practice some vocational skills in the community. Step by step, with lots of prompting and the promise of coveted cookies, Brian placed several items both in the shopping cart and on the belt at check-out. Overall, he did well, and I regained some confidence that we could possibly repeat this performance again. Our previous shopping experience had been cut short due to Brian’s behaviors after a brief time in the store that forced us to purchase the few items in the cart, then leave immediately thereafter. Yesterday was definitely a much better experience. Brian preferred to “socialize” with other customers and the employees, lol, but he ultimately got the job done.

Speaking of jobs…while reflecting further on our field trip to the Shop Rite, I was reminded of when I held my first official “job” at McDonalds at 16 years old, just a year older than Brian is right now, earning $2.00 per hour! Previously, I had delivered newspapers as a 11 year old, then started babysitting at 12 years old, but these jobs were hardly work compared to McDonalds! Boy, did we kids work for that minimum wage! I mainly worked the cash register, but also cooked burgers in the back, made shakes and fries, as well as stocking the freezer and taking out the garbage. This experience set the stage for a strong work ethic and the acquisition of a skill set that I found to be transferable to future careers/jobs. You had to be productive in this setting; there was really no time to goof off ( though we did that also in the crew break room, like inhaling helium from the Ronald McDonald helium dispenser, then talking like Alvin and the Chipmunks, lol!) As one of our managers always said, ” if you have time to lean, then it’s time to clean”- what a tyrant, lol!

Brian will never have these type of work experiences due to his extensive disabilities, but it is of paramount importance that he too, is productive in SOME way after his formal education ends. Many families share the same goal for their special children- these young adults must be engaged in something, be productive in some way, after school is over, as the alternative of doing nothing is like the kiss of death for our kids (and we parents). Post 21 programs are still emerging, but the concern is that the supply will not keep up with the demand. There are more children diagnosed with special needs (especially with autism) then ever before due to both awareness and earlier identification. I recently read that only 15% of special need student graduates have jobs, most of which are part time. That means 85% of these young adults are not working or doing anything. 🙁 My husband says that I obsess too much over this-with these type of dire statistics, it’s hard not to! Jim also says that we still have almost 7 years left until Brian finishes school. While that may be true, time will pass quicker than we think, and job/ program options should ideally be predetermined before graduation- but what exactly will those options be at that time?

This remains to be seen and when I think about it for too long, I get anxious and fear that Brian may be part of the 85% who will be at home because his needs are so many and complex and there won’t be any jobs or programs to accommodate those needs. I know that I am actually in very good company regarding this concern, it’s sort of like the elephant in the room that no one wants to point out, yet we are are all painfully aware of its existence… In instances like this, there is a good reason why the saying. ” one day at a time” is so important, as all of us struggle in our quest to find job solutions for our kids. While Brian’s school does have a post 21 program, there are no guarantees that he would be accepted into it when he graduates.

I keep telling myself that ultimately Brian will be somewhere, doing something, but it can’t just be anything, it has to be the right thing… Something that will match his specific skill set and needs, with the proper supports and personnel. Things that are costly and good staff can be hard to find. Here I go with the obsessing again….

I love hearing about or reading the various stories of employers hiring disabled workers for the service industry, like coffee shops or restaurants, both locally and nationwide. There are also more special schools who offer ” after 21 programs” ( or will in the future) because of the present and future need for them. Local businesses are also more amenable to hiring disabled workers or outsourcing work for them to do. This is definitely progress, with hopefully more to come… I can personally envision Brian as a Greeter at Walmart, or a host at a restaurant, where he greets customers at the door and shows them to their tables. Brian’s sociable nature would be a good match for such positions- we would just have to make sure that he gets back to work and doesn’t sit down or want to leave with the customers, lol!

We will have to see what happens and be open to job opportunities, whether to receive or possibly create them ourselves, and that, of course, is the scary part.. A good friend once shared with me: ” I don’t know what the future holds, but I know who holds the future”…It is my belief that God will continue to be faithful in providing for ALL of Brian’s needs, despite my fear and lack of faith at times. So far, God’s provision track record has been pretty darn good in Brian’s life, and mine too, for that matter, even if the timing was not what we wanted or expected. Ultimately, everything will work out… Even our Coat of Arms/Family Crest for “Boyle” ( my maiden name) is the oak tree with the motto: “The Lord Will Provide”- I think that is a clear sign…

May our special children experience the fullness of God’s provisions according to their EVERY need, now and always…Until we meet again, thanks for reading! 😊❤️