A 12 Step Program For The Special Needs Family- Part 2

In the previous blog, I had presented the first 2 of 12 steps that have helped me daily in my journey as a special needs Mom. These 12 Steps are modeled after those  founded in  the Alanon Program, but they can really be applied to a myriad of life challenges. I have learned the importance of having a “toolbox” that can be used when the going gets tough both in the short term and for the long haul. Some days, these steps are all I have left to cling to.  So, let’s continue….

Step 3 

Made a decision to turn my will and my life over to the care of God as I understand him.

This is a conscious and daily decision for me. It does not come easily! I am used to taking charge and managing all aspects of Brian’s life, aka, being an advocate for my son. I make numerous decisions for him regarding his physical, educational, and social well-being. It is a lifelong venture that is relentless,  sometimes exhilarating , and often exhausting. I am depending upon a lot of people to help me help Brian. It really does take a village  to raise our kids! In the process,  I can get easily overwhelmed and most certainly have over the past 14 years. It does not get easier as our kids get older, as there are always additional challenges and concerns. I have sometimes been literally on my knees asking God for help when it all becomes too much. I believe, but was not really trusting my Higher Power. My faith needs to be strengthened to know that somehow, everything will be OK, even when at the time of crisis, things appear  so hopeless. I often think about Brian’s future when my husband and I are gone and become paralyzed by fear. I try not to do that and just live one day at a time, but it’s not always possible. This is where the conscious decision to trust God and turn my will, and all of my concerns, over to His care comes into play- even when I don’t feel like it or believe, but realize I am at the end of myself… If I do my best, He will provide the rest, whatever I need, not  just for Brian, but for me too, in all areas of my life. These things don’t happen according to my timetable of course, lol, but I have learned and have seen over and over again in my life and in Brian’s, that God is faithful and trustworthy in His provisions of the people and resources that are needed, whether for Brian or  for myself. .It’s good to know that we don’t have to carry our burdens alone- I am really relieved quite frankly!

Step 4

Made a searching and fearless moral inventory of ourselves 

I find this Step to be quite intimidating because it requires me to be totally honest about my motivations when I do things for Brian. Is it always in his best interest or am I just doing something to make me feel better? It’s an ongoing struggle.. One area in particular that I found difficult to reconcile for the longest time was Brian’s academic abilities. I was never under any grand illusions that Brian would be star student, but I assumed he would at least know his letters, numbers, be able to read and write, etc. I thought he just needed extra time, a better teacher, a new learning approach etc. I pushed very hard in every way imaginable to make this happen for a long time… However, every Individualized Educational Plan (IEP) over the past 11 years has shown only minimal improvement in “academics”overall-ouch-that’s been very painful to read and accept- but only for me- not for my son, and THAT is what really matters! I realize my background as a teacher and a Mother’s heart are the reasons for my disappointment, however, it doesn’t mean that Brian has not learned some of these basics and will continue to- he has! 😊 He has also shown a stronger aptitude towards vocational education and is doing well and is learning! I have learned (and continue to learn) to adjust my expectations and  to focus more on Brian’s strengths, as it should be. The same holds true for community activities, sports, etc. I want Brian to be exposed to various things and to try them, but I look at MY motivation first now  before doing so- is this in Brian’s best interest? Is it worth it? How important is it really?  Will it ultimately make a difference in his life or make him happy? Often we need time and practice to do new things for a while in order to answer these questions and if I pay very close attention to Brian, he will often tell me very clearly  himself what he wants to do! 😊👍🏻

Time for a Blog Break! 👍🏻 Four Steps down and 8 more to go. Thanks for reading up to this point- many blessings on you, until we meet again. 😊

A 12 Step Program For The Special Needs Family 

Everyone needs a 12 Step Program- you’ve heard it here first! And perhaps no one needs this more than special needs families. But what exactly does this mean?  How would 12 Steps make a difference in my life? Now, you may or may not agree with this premise, or even understand what  I am saying, so let me further explain.. 

I’ve attended Alanon support group meetings for many years  in order to understand those beloved ones in my life who struggle with addiction, as well as those who are now  in recovery. The Alanon program is based on 12 powerful, life-changing principles. These steps are truly “a blueprint for living” for those of us who have been profoundly affected by the addictive behavior of others. Over a very long period of time, I slowly came  to understand  how my own behavior could also have a positive or negative impact on these relationships. I also learned  what creating healthy boundaries with others meant and how to take care of myself. It was all about “keeping the focus on me”and not interfering in others affairs. This was definitely not easy! I wanted to give unsolicited advice to be helpful,  but I learned repeatedly that this practice  would hinder the recovery process. Over time, I realized that these same 12 Steps could also be successfully applied to other  life challenges. Sooner or later, each one of us will need a life raft to navigate stormy seas, lest we drown…

It was during a low point last winter,  when  I realized that the 12 Steps could be my roadmap to parenting my special needs son. I  had felt a great deal of despair  and  depression earlier this year- the dark, cold weather certainly didn’t help, but it was much more than that. My husband travels frequently for work and during that particular time, he was in Japan.  The long distance exacerbated my loneliness and feeling of isolation. Brian was having severe sensory issues and transition problems last winter. The school day was being adversely affected, as well as the Home Therapy program during this time. Brian kept throwing things, turning lights on and off, getting frustrated, etc.  I felt so utterly powerless and out of control. It’s especially during moments like these that I wish with all of my heart that Brian could just speak- any words at all! Like a doctor, I just wanted to “cure” my son of what was ailing him in that moment. I fell asleep hard one night  out of sheer exhaustion and really did not want to get out of bed the next morning. Once I got Brian off to school, I went about my daily routine and happened to open up one of my Alanon daily meditation books to the page where the 12 Steps were listed. Although I had read them hundreds of times before, this time, my interpretation of what I was reading was different..Call it a “light bulb moment”( I truly believe it was Devine Intervention), but I was prompted to go back to the Alanon 12 Steps and read them again, gaining a new perspective..I concluded that these very same steps could be applied to raising a child with disabilities. Or any major challenge in life quite frankly, but since this is a special needs blog, I will explain from this point of view, so here it goes: 

Step I

“I admitted that I was powerless (over Brian’s disabilities), that my life had become unmanageable.”

This is absolutely true.  I am powerless over my son’s disabilities; I can’t make them disappear. I wish I could! The fact that I can’t frustrates me, especially when Brian is adversely affected by his challenges. I feel life becoming unmanageable when these episodes happen. I hate that out of control feeling, but, I have to remind myself that I am not helpless. I try to provide my son with the love, support, and resources that he needs, to be the best person that he can be- this is emPOWERing. My life becomes more manageable when I know I am doing my best, one day at a time. It’s all about progress, not perfection. I must remind myself of these truths when the going gets tough. Feelings are not facts.

Step 2

“Came to believe that a Power greater than myself could restore me to sanity”

I believe this with all of my heart, even when I don’t feel it. I call this Power greater than myself, “God”.  I have seen evidence of God’s Power throughout  my life, both in trials and tribulations. I believe God restores my sanity in the special needs journey with Brian and will always continue to do so. He made  Brian, loves him more than I can imagine, and has created him with great purpose in mind. I have been privileged to witness Brian’s powerful impact on others, just by being who he is. Most of these encounters have been heartwarming, but certainly not all of them. Regardless, I see and understand that Goodwill Ambassador Brian has an important job to do during his time on earth, and is a vital link in the chain, just like each one of us. I cling to these truths like white on rice and remind myself of them when I feel I am going insane during those very difficult times. Like a new exercise, it takes time, patience, and practice for these things to take root. I’m relieved that I can be restored to sanity, well, at least most of the time! 😊

If you have read all the way to this point, you are to be commended!  I will continue with the remaining 10 Steps in the next blog and pray you may have been encouraged in some way by this one. Until we meet again, thanks for reading! 😊👍🏻

Past Lives Forever Transformed

They called us “One In A Hundred”. For every 100 applicants interviewed by the now defunct People Express Airlines (PEX) of the 1980s, only 1 of us were hired. We were that extraordinary! We were Customer Service Managers (CSMs) who flew as flight attendants, worked as ground personnel, and held  many other internal positions within the company. We worked hard, but played hard too. Many of us were fresh out of college, seeking adventure, travel, and business opportunities. We accomplished all of that and developed a business skill set that was eventually transferable to other careers. People Express truly left a lasting impression on the hearts of the employees who worked there, as evidenced by the 30 year reunion of almost 1000 people that took place this weekend in Newark, NJ, where the whole journey began.

Deregulation of the airline industry back in the late ’70s made it possible for everyone to fly, and the launch of People Express in 1981 made affordable air fares possible. Eventually, over expansion and competitive airfares brought on the demise of People Express in 1987, but many of the friendships that were established back then have remained strongly intact today. Our circle of “gal pals” is just one of the many groups of friends who still keep in touch all these years later. We have been able to meet in various locations throughout the country from time to time over these past 3 decades. I am always amazed how we pick up exactly where we last left off! I revert back to that silly 20-something, whenever I am with these wonderful ladies. All of us have witnessed both good and bad times in each other’s lives and have been there with  loving support. We laugh  until we cry and make the most mundane moments hilarious ones. We are forever friends, the gift that just keeps on giving! It was so wonderful to also see many other  former colleagues and to reminisce about old times with them this weekend.  I never knew I had so many words in me! This moment in time was as historical as the airline itself and I’m so glad that I could be a part of it. 

Of course, life is so different now. I used to travel around the world and now I mostly drive around town! Careers and priorities have changed, just like the seasons. I never would have guessed back 30 years ago what my life would be like today. I suppose that is true for most special needs families. We forget in the daily challenges of raising our kids that we were once single and had a totally different life before we had them. The People Express reunion this weekend reminded me that it is important to acknowledge and honor that part of our lives from time to time, a very vital part of the “self care” that we NEED!  I was able to play and take a break from home responsibilities this weekend because of my husband and niece. I am truly grateful for that. It was a huge gift and one that I throughly enjoyed. It’s actually the best gift that a special needs family can receive- time away to reconnect with the people, places, and things that give them joy.

Don Burr, the founder of People Express,  always believed in a “People First” philosophy regarding both customers and employees. We, as special needs parents, live  this philosophy every single day with our children. Like People Express CSMs, we wear many hats  and are expected to play multiple roles on behalf of our kids. Our hours “on the job” are also very long and in our world, can really wear us down! It’s a very difficult part of just what we do, because we love our kids and they are depending on us. But what about ourselves? Aren’t we “people first” too?!

Every special needs family I know has a unique set of circunstances with their disabled children. Some families have  much more support and opportunities than others to take care of themselves, a spectrum of its own that varies in each situation. Some families also have more than their fair share of challenges with no support whatsoever. Weekends away are never a possibility and they are often the people who need it the most. 😞  I wish there was a solution, but there is no perfect one. In the meantime, I  believe special needs awareness and involvement should continue within extended families and communities, so that the needs can be identified of those who require a break, whether it be for a few hours or a few days. I can assure you, that the “people first” investment of special needs parents will reap major benefits for not only their physical and mental well being, but also for  those of their children. It’s always easier to take care of your child when you’ve had a break, a good night’s sleep, and an adult beverage- the perfect trifecta! As the saying goes, “put your oxygen mask on first, before you place one on the person next to you”. Once a flight attendant, always a flight attendant. 🤣

Until we meet again, thanks for reading!😊