There is something that special needs parents can never get enough of and it is often in very short supply. Sometimes it’s free, and other times we pay for it, but it’s worth every single penny! Most of us would say that this gift is invaluable and it is much appreciated when we receive it. I am more aware as time moves on how essential “it” really is for my mental and physical health. In case you haven’t already guessed “it”, I am referring to the most coveted and much needed “respite”! It is often considered to be a luxury for many special parents and unfortunately hard to find. However, it’s truly a necessity that we cannot do without if we expect ourselves to take care of our special kids long term. This fact becomes more relevant as time moves forward. I forget sometimes that I am getting older; call it a case of extreme denial, although my body gently ( and sometimes not so gently) reminds me that things are changing, slowing down, etc, the inevitable part of the life cycle that each one of us will face…

Acceptance and awareness of middle age finally occurred to me last year, after my 57th birthday. I’ve noticed over the past 9 months, small differences, albeit significant enough, to get my full attention. Things like experiencing the Tin Man Syndrome when getting out of bed each morning; the stiffness in the joints that require movement and the fish oil to get me going again. Or my energy level that was once quite robust ( in my heart I will always be a night owl), but is now mostly depleted by the time Brian goes to bed. Speaking of sleep, it’s been disrupted many nights by menopause, racing thoughts, Brian’s moonlight shenanigans and other pesky interruptions. Chemo-induced neuropathies in my fingers and toes will forever remind me when cold temperatures are here and can also be quite tiring. Finally, changes in memory, being forgetful, like standing in front of the pantry for several seconds trying to remember exactly what brought me there in the first place. It’s all predictable, inevitable, and sometimes scary if I think too much about it. I pray daily that Jim, Brian, and I don’t lose our memories simultaneously- can you imagine what a disaster that would be?! Hence, the emphasis that we try to place on good nutrition, exercise, and rest, the important ingredients for a long and healthy life. Eating well and physical movement are under our direct control, but the rest and relaxation component requires more than just a good night’s sleep. We are dependent upon others to help us get a much needed break, which is quite often. I look at these breaks, wherever and whatever they are, as an investment in my emotional and physical well being, which results in being a happier, more patient Mom and wife.

When Brian was first born and for quite a long time after that, I did not believe that I had the right to relax for some reason. This was not a conscious thought, but my actions and lifestyle were so unbalanced and “Brian Centric”, that it’s no wonder I didn’t have a nervous breakdown. I came close, however, when my body and mind sent warning signals that I just couldn’t ignore, like depression, and eventually colon cancer. Cancers can be caused by inflammation in the body, which can be triggered by extreme stress, which was my experience at the time.

So, when you know better, you do better! Going through these experiences have taught me that I needed to dramatically change the way I was living my life and that respite must be part of the daily regimen, along with nutrition and exercise of some kind. Respite comes in many shapes and forms. My personal favorite is alone time. It’s funny how introspective I’ve become in recent years and how I crave solitude for physical and spiritual replenishment. I’m outgoing, but I’m a private person. I love being in a crowd, yet I most enjoy “one on one time” with family members or friends. I especially covet that alone time to walk, read, nap, or watch a favorite program; it really is the simple pleasures in my life that can be most restorative. So, any opportunity I can create to make the aforementioned happen,, I do so, even if it is just for an hour, Every. Single. Day. These things are as vital as breathing air, so they MUST happen, no excuses! I’m too important not to take care of myself.

I am so grateful for any and all respite opportunities that I receive that keep Brian busy, whether just for an hour, or overnight. It really is good for both of us; I get to relax and he has opportunities for social independence, which is especially important for later on when Jim and I are no longer here. I enjoy catching up with other parents/friends or taking the time for myself or with my husband. I am refreshed and able to resume my caretaker role for Brian when I return. Brian is learning skills and spending time with peers. I can’t think of a better way to detach and recharge my batteries: it’s a true “win win” for all concerned. I have also learned that respite time doesn’t have to break the bank or require days away ( although that is certainly the best kind of break!) to have the same refreshing effect. The key is the respite frequency and to incorporate it into the daily schedule.

Remember: if the “Mothership” ( or “Fathership” ) goes down, the whole family will sink… That is not good for me, my husband, or Brian. There is too much at risk if I don’t take care of myself; self-care is my priority and must be my life-long mission for me to survive this special needs walk for the long haul. There is no other way- “you are worth it, so work it”,repeat!!😊👍🏻

Below is a list of some of my favorite things to do whenever I take a respite. How about YOU?!

Reading a non-special education book

Talking with a good friend

Napping

Taking a bubble bath

Going out to dinner with Jim

Meeting a friend for breakfast or lunch

Walking

Planet Fitness

Listening to music

Watching old Seinfeld episodes

Getting on a plane

Writing

Planning a vacation

On a final note, most special families would agree that one of the top gifts they would LOVE to receive for Christmas, Chanukah, or their birthdays, would be RESPITE! The precious gift of time alone or away for those parents raising disabled children is truly most appreciated, more valuable than any present money could buy, believe me!

May you experience the daily respite that you need and deserve, in order to live the special needs life with strength and grace. Until we meet again, thanks for reading!

😊👍🏻

Many people with autism have limited recreational interests and Brian is no exception to this.. In his case, there are many reasons why this is so: Brian has significant motor planning challenges, along with focusing issues, and slower auditory processing. Not to mention his own unique personality that clearly communicates “no” to many things, especially if they are new and unfamiliar. It’s a delicate dance with my son in this regard and I have to pick my battles with him. His automatic default would be to sit on the couch all day (literally!) and scan “YouTube” videos or Little Einstein and Mickey Mouse episodes. I’m fascinated, by the way, how Brian is so proficient in maneuvering around these programs, despite his severe disabilities. I caught him recently doing the exact same thing on my iPhone while scrolling my Facebook newsfeed, lol! Perhaps Brian will also use FaceTime in the near future; I really wouldn’t put it past him! It proves once again just how much our kids know and what really motivates them. Secretly, I’m very pleased to see that awareness and engagement, but we all know that too much of a good thing is not necessarily a good thing at all, and that especially holds true for iPads and iPhones.

So, my “battle plan” with Brian is usually to encourage him to try a new activity, often to his great reluctance. He is the ultimate Creature of Habit and Repetition. He demonstrates his displeasure with something new most effectively in “The Freeze”, formally known as the “Stop, Drop, and Flop Move”. Many of you understand exactly what I’m referring to, it’s that “what is this, “I don’t recognize this”, “I don’t want to do this”, and the infamous, ” you can’t make me”. This has been Brian’s national anthem for years! It’s so predictable and sometimes simultaneously wearisome, depending upon the amount of sleep I had the night before. Years ago, this behavior would have required a team effort of tokens, edibles, and enough positive reinforcement for a lifetime for Brian to comply and try. Thankfully, he has moved on to the point of needing just a verbal command, then waiting him out for 20 seconds or so until HE decides it’s time to proceed-I can really set a timer to this one!

Brian’s Great Resistance is mostly to physical activity/movement and has always been. In part, I understand why, as he has low muscle tone overall and severely pronated ankles specifically, hence, the ankle/foot orthotics that he wears. Brian was a very late walker and struggles greatly with coordination. Sports are very difficult for him, although he has recently started to experience some success with both swimming and kickball. Brian is also starting to walk more, and as basic as this sounds, this is huge for him. I could really care less about Brian’s athletic abilities, but what I do deeply care about is his long term health. People with Down syndrome have the proclivity to become overweight as adults, resulting in potential long term health problems. It’s something we are trying to help Brian avoid by instilling good habits now. I also hear the voice of Brian’s orthopedist in my head, warning me not to let Brian become overweight, because too much weight on the feet would be detrimental to his already compromised ankles, requiring surgery and a lengthy recovery. No thanks, Doc! This is motivating enough for me to try my best in keeping Brian physically active, at least most of the time. Thankfully, both school and local recreational activities help us to help him achieve this goal. Brian is not quite as resistant to movement as he once was, so this is indeed a huge victory for him, achieved over a very long period of time.

Next is the Recreational Resistance to hobbies, such as arts and crafts or puzzles. Similar to physical movement, he resisted these things with all of his might to the point of sensory meltdown for a very long time. Only in recent years, will he even try these things very grudgingly, very briefly, BUT at least he will try them. I am very proud of Brian for at least trying and I do understand his reluctance; I too, dislike puzzles and can only draw stick people, lol. Brian is a music maniac and a water bug. These things feed his soul and create a joy in him that is palpable. A recent addition has joined the ranks of Brian’s Preferred Activities, and although it is not quite as beloved as music and swim, it’s pretty darn close and was quite a surprise to Jim and I: Brian has become obsessed with the written word, aka: books !📚 📚

Now this addition to Brian’s recreational repotoire is quite fascinating, as he does not read, however, he LOVES to be read to! Brian has a special affinity for preschool and primary board books, particularly the Eric Carle (Polar Bear, Brown Bear), as well as the James Dean, “Pete The Cat” series, and many other books now. Book reading was always part of the bedtime ritual since Brian was a baby, but he has taken it to a whole new level with requesting the reading of multiple books at a time each night on his Proloquo app on the iPad. We limit it to 4 books and the squeals of delight that come from this kid right before reading the first page of the first book, would make you think that he just won the lottery! I am so delighted that Brian is now interested in books. I loved them as a child too: there is nothing like the smell of a new book, the feel of a book in your hands, the way you can thumb through the pages of a book. Reading always fueled my imagination, increased my vocabulary, helped me to learn how to write, etc. Books are the great escape and how we learn so much about others and the world around us. Although Brian’s experiences will not necessarily parallel mine, what we do share in common is the joy of reading a good story and the feelings that books evoke. Our reading ritual at night is a fun, happy event for Brian; he revels both in the story and in the physical contact in sitting together. Brian has begun to examine the pictures on each page, pointing out “characters” when requested to do so. Brian does understand who the characters are in the books we have read repeatedly and anticipates favorite parts through his sheer glee. We have a ” new book of the month”, to introduce a new book, otherwise Brian would want to have the same few books read to him, lol. Slowly, but surely, he has built an interesting collection over time, with no end in sight!

My husband and I will continue to expose Brian to various recreational opportunities as they arise for both his physical, educational, and social development, while simultaneously respecting his limits when he makes them apparent to us. I sometimes still have to remind myself that it’s not about me, but rather it’s about what will make Brian ultimately happy. It’s an area of struggle, but like Brian, with repetition and time, I, too, am getting better. I am learning to detach from the notion of what I think Brian will like or won’t like to do. I am also learning to trust that Brian is quite capable in communicating in his own way and time what is best for him. It’s exactly what I would want if I were in Brian’s shoes, truth be told. In the meantime, Brian enjoys his music, swimming, and the nightly ritual of beautiful books, whose pages contain enough delight and wonder for his eyes and ears to behold. The characters are fun and the stories don’t disappoint. It’s the Grand Prize at the end of the day and the perfect elixir for bedtime.

“Polar Bear, Polar Bear, What Do You See?”

” I See A Young Man With A Book On His Knee, Looking At Pictures Engagingly” 😊👍🏻 – The End

Until next time, thanks for reading! 😊❤️

Recently during lunch with a friend, she happened to share that her marriage was in serious trouble (due to a number of reasons over a long period of time) and that divorce was the likely outcome. I could see that it pained her greatly to even utter the “d word” and that she still loved her husband. This couple had willingly tried counseling and were faithful in attending sessions. It was apparent that my friend did not want her marriage to end, but felt she had no choice. I felt so sad for this lovely woman and honestly didn’t know what to say, for fear of coming off like a series of platitudes. No one thinks on their wedding day that the marriage won’t last. All couples have hopes and dreams to share life together “until death do us part”. It’s the way it’s supposed to be and the way we want it to be.

My friend commented how Jim and I seem to have it together both as a couple and as parents. I quickly informed her that nothing could be further from the truth and things are not always what they seem. Jim and I are just like millions of other couples; imperfect people who often struggle daily to make our marriages work and to raise our children. Some days Jim and I fail miserably and other days we succeed victoriously. Many days it is the grace of God that gets us through because we just don’t have it within ourselves. The responsibilities we carry as partners and parents can be back-breaking, not to mention the unexpected curve balls that life can throw at us. Collectively, these things can wear us down and adversely effect our marriage. It can happen so very easily. I realize today there was a very good reason why I married later on in my life: I wouldn’t have had the fortitude and maturity that it takes to make a marriage work when I was younger . And even with those things, there are still no guarantees of a happily ever after.

Brian’s arrival into our lives, of course, was the real test of our character and faith within ourselves and our marital bond. Overall, we continue to do the best we can as parents and are a strong team together. Our marriage was also severely tested when Jim lost his job and I was diagnosed with colon cancer. I suppose if these things didn’t push us to the brink of divorce, then nothing would have. It was during those trials that we ultimately stayed strong and made a daily decision to persevere, even though we often didn’t feel like it. But what choice did we really have? Ironically, Brian was the one who encouraged us the most during this time , despite all of his challenges. I don’t think this was just a coincidence…

As a result of living through these situations, I’ve concluded in retrospect it’s better that the future is not revealed to us. I’m not so sure that I would have answered the call so willingly to be a special needs Mom, had I known ahead of time. I’m not so sure that I would have necessarily remained married either. We were both very aware of what a high- risk pregnancy meant and were willing to take on those odds because of our strong desire for a child of our own, but never anticipated exactly HOW a disabled child would change our lives forever . Jim and I were hopeful that the odds would have been in our favor for a healthy, typical baby. However, every step of my pregnancy had markers that indicated a baby with Down syndrome, so I knew in my heart ( when a hole in Brian’s heart was revealed at 19 weeks in utero), that our son most likely had the extra chromosome. It was devastating news- the only reasons why Jim and I were able to carry on was because we loved each other and our faith in God, the same faith that each of us were raised with in our respective families growing up. The one thing that we knew for sure was that Brian was meant to be our son: his life had a purpose, just like the rest of us, even if that purpose was not so evident at first blush. There is something to be said about couples being similar in the fundamental areas that are important when sharing a life journey. For us, our Christian faith, how we view finances, and the sense of love, loyalty, and commitment that we saw demonstrated between our parents, especially when the going got tough, had a huge influence on us. These gifts still serve us well in good times and in bad, and always will- without them, I do believe divorce would still be an easy thing to do. But I also understand that sometimes, love is not enough, some circumstances can’t be overcome, or one of the spouses may decide they don’t want to reconcile the marriage.

Jim and I have to make a deliberate effort and a daily choice to work at our marriage. There are major obstacles that constantly threaten to undermine our efforts, primarily, Brian’s endless needs, work, and home responsibilities. These things are always going to be there, so it comes down to choices and priorities. We are getting better at making wise choices with the limited free time alone that we do have. It took us a long time to realize why making time for ourselves was not only paramount for the marriage , but Brian would also benefit from a happier Mom and Dad. Whether it’s a formal date or just catching up over coffee, it’s important time that we need together. It strengthens the bond that we will need when life’s adversities come to call or to make the good times even better. I say it’s a good marital investment that can reap priceless returns. I pray that we will remain solid in our commitment to each other and to Brian, who is counting on us to be strong. With God’s Grace, I know that all things are possible, especially when it comes to the impossible. I have experienced enough miracles in my own life to know that this is true. It is this very hope that sustains me, my marriage, and my role as Brian’s Mom. Without grace and hope, life is too difficult.

May your marriage and family experience amazing grace in all facets of your lives. May hope reign supreme in your heart, especially when the chips are down and everything seems utterly hopeless: your miracle is just around the corner!

Until we meet again, thanks for reading!

❤️😊👍🏻

One of my ongoing New Year resolutions is to have more “flexible expectations” as far as Brian’s life is concerned. This includes every facet of his life, from soup to nuts. Difficult? Very much so! Impossible? Well, not so much now compared to the early years, when everything was so new, intense, and overwhelming. Don’t get me wrong- raising my son can still be very overwhelming, but time and experience have brought new perspectives and coping strategies. I continue to learn right along with Brian and I’m sure I always will, for better or for worse.

At the end of the day, I just want to see Brian happy and healthy. It sounds simple and overplayed, as we hear these 2 wishes so often, especially at the beginning of a new year. However, the reality is, without these essentials, our children’s lives (as well as our own) will be a huge struggle on so many levels. Therefore, we strive to provide our kids with every medical, educational, and social opportunity available to ensure that these wishes will be realized. Years ago, our focus was primarily on the medical. Sustaining my high-risk pregnancy and getting Brian safely out of my womb were the 2 primary goals for 8 months. Once he arrived, then it was open heart surgery, followed by an orchiopexy, ear tubes, and eye surgery. It took quite a while for the medical issues to be stabilized before we could follow more of a “medical routine”. Ultimately, we achieved the goal of getting Brian to a place of good health. Down syndrome presents it’s own ongoing medical challenges, but so far, they have been managed well by the stellar physicians placed in our path. Brian also eats well. A checkmark could be placed next to the “healthy box”- at least for now, and hopefully for a long time to come.

Just like Maslow’s Hierarchy, once the physical needs have been met, we need to feel safe, then loved in our environments, followed by a sense of belonging. Our kids are no different in their need for all of the aforementioned, perhaps just more opportunities. Brian certainly benefits from lots of opportunities/repetition for every one of his life experiences in order to understand them. Whether it’s a new food texture, or new people in a new environment, Brian will always require several trials of whatever it is. It’s a predictable routine that my husband and I have come to know. While we try to challenge Brian in order to see exactly how far he will go, we also respect his boundaries. Life is long and Rome was definitely not built in a day, in fact, it is taking years with no end in sight!

Special education has been the “main dish” of Brian’s “meal” over the past 12+ years. There has been a lot to digest and learn, with many struggles along the way. Classroom activities, therapy sessions, behavioral plans, vocational education, and IEP meetings, etc. So much time and effort are being invested in Brian to help him be his best person. I sometimes get lost in the details that really don’t matter in the long term and forget that happy, healthy, and personal fulfillment will mean much more to Brian than mastery of IEP goals.

Ultimately, there comes a point when I have to prioritize what I think is important for Brian to experience and know. This process is ongoing and has sometimes been very painful. It has required a shift in attitude and mindset, a letting go of old dreams, and the creation of new ones. Sometimes the “wish for what could have been” comes to visit at the most unexpected times. Holidays, life’s milestones, and other events can sometimes still be emotional triggers to remind me that Brian will never go to college, marry, or live independently. Daily routines also point out that he will always need help with everything for the rest of his life. Years ago when Brian was little, especially after his additional autism diagnosis, I concluded that we were doomed by disabilities that were larger than our lives. The grief and profound sadness of our reality made me a hot, inconsolable mess for quite a long time. Acceptance was initially an unwanted guest, but thankfully became our good friend in it’s own time. Eventually, there was a gradual shift from the hopeless to the hopeful. I would have never believed it was even remotely possible, especially if you asked me when Brian was very little. I remember reading one special needs book about Down syndrome back in those early days when a Mom said how much of a blessing her son was and that she wouldn’t change anything about him. I thought that was insane when I read it. How are the challenges and hardships imposed by a disability exactly a blessing? I eventually came to understand that it’s not the hardships themselves, but rather, what they produce, that are the blessings. Things such as: hope, perseverance, love, support, compassion, and appreciation. Of course our kids also exhaust us, drive us crazy, and always will. Brian certainly does these things too, but he has also taught me over the years how to look at life through his eyes. I haven’t always accepted his invitation, but when I have, I am the better for it and so is he.

I’ve also concluded that productivity/fulfillment is just as important as health and happiness. Brian may be sated and quite happy, but it’s also paramount that he is doing activities that are both fun and productive. Keeping busy is key to productivity and purpose- it wards off depression, and keeps us moving/engaged with others. The alternative of prolonged inactivity is like the kiss of death; this is very different from periods of rest or low-‘keyed activities, which are also essential for our kids. Any extreme on either end of the activity spectrum is certainly not healthy.

School has provided ample opportunities for productive learning that can result in job skill acquisition later on. Brian is learning various jobs and self help skills. He is out in the community quite frequently between home and school. Brian also has a home therapist after school during the week to assist with leisure and vocational skills. Plus the weekend recreational activities. It is certainly a busy life- is Brian always fulfilled by it? I’m not always sure. He absolutely prefers some activities versus others, just like the rest of us. He is learning to accept changes and will at least try new things, albeit briefly in the beginning, with a gradual increase in effort as time goes on.

At the end of the day, it is my hope and prayer that Brian will master one skill that could be used for some type of “work”. What exactly this “work” will be remains to be seen. It is a huge concern for many special families, as the rate of unemployment for special need graduates is quite high. Some families are creating their own work opportunities for their special young adults. Perhaps we will also be inspired to do the same. Or it may be that Brian will be happiest doing recreational activities. It’s hard to predict exactly what will ultimately happen, as things constantly change. We are open to any inspiration that would lead us in the right direction. In the meantime, we pray a lot, then follow Brian’s lead.

As another new year begins, we will once again try to keep healthy, choose happiness, and actively seek fulfillment in 2019 with an open mind and heart. I believe Brian would wholeheartedly agree with this plan and wouldn’t want it any other other way.

Many blessings on you and your family in 2019! May you be happy, healthy, and fulfilled by what matters most…

Until we meet again, thanks for reading!

😘❤️😊👍🏻

As the song goes, “it’s the most wonderful time of the year”, a time filled with holiday music, delicious treats, time with family and friends, and gifts to celebrate the season. Many of us have great hopes for the New Year ahead. We have our resolutions in place and are determined to follow through with them this time. I do love this time of year and enjoy (over)indulging on the many delectables of Christmas, with the annual vow of a healthier start a few weeks later. It’s a fun, fast, and furious season- before you know it, the party is over, and with it, a “let down/deflated” kind of feeling, a sense of emptiness… I’m sure the sugar high (then low),plays a crucial role, but it’s more than that…the tinsel, gifts, and carols appeal to our senses, but only briefly, often leaving in its wake a deep hunger for something more satisfying and lasting…

The holidays can also be painful for many people and often represent losses of great magnitude , such as unfulfilled dreams and expectations of what Christmas should have/ could have been like. Loved ones who are no longer with us is another huge void and the holidays can certainly be a reminder of their profound absence that causes a literal heartache. I think of my beloved Dad as I write this and how much he used to enjoy Christmas at our house each year. I can still hear his voice and laughter in my head and will miss his presence immensely again this year. It can be very hard to be merry. Everyone and everything appears “cheerful and bright”. But appearances can be deceiving and the reality is more likely “dysfunction junction” for some folks sitting around the Christmas table. The holidays can resurrect old wounds and unresolved emotional conflicts, keeping families and friends at a distance. Not exactly the Currier and Ives holiday card that we like to see!

There is a Christmas gift that I desire this year that can make life’s imperfections much more tolerable. It costs nothing, yet is priceless and powerful. It has eluded the grasp of nations and has been desired since the beginning of mankind. This gift heals our immune system, soothes our spirit, and protects us with the armor of its strength and compassion. We are able to endure the bad times because of it and this present is well received by others. It is the gift of peace….who wouldn’t love TRUE “peace of mind” or a “peaceful heart” in both good and bad times? In the Bible, there is a verse that describes ” the peace that passes all understanding”, so even in the midst of very difficult circumstances, you can still have peace. Remarkable? Absolutely! Possible? I believe it is. Yes, I would definitely like this gift for Christmas (and all year round) for daily living, for my mental, physical, and emotional health, but especially as it pertains to my concerns about Brian.

Let’s face it- our special kids have and will always give us many reasons to be worried/concerned for their welfare as long as we are on this earth. The anxiety associated with this huge responsibility is enough to rob me of the peace that I desire and has certainly done so. There have been many times over the past 15+ years when this is exactly what happened and I paid a high price for it. The result was fear and depression, neither good for my mind or physical health. Sometimes we get stuck in old habits that die hard. Sometimes it takes enough hardships to finally consider a new approach. I have finally reached that summit and am ready to go to the mountain top by a leap of faith. I have nothing to lose and believe it will be the best view yet in 2019, despite what the circumstances will be . I want that “peace that passes all understanding”- I know it’s possible and am ready to receive it!

Above Brian’s bed is the quote “peace on earth”. This is Brian’s “happy place”, where he is most peaceful. There is nothing more tender than watching a child in peaceful slumber, wouldn’t you agree? It is my nightly delight to watch my son sleep for a few minutes when I check in on him. Brian looks like a beautiful, peaceful angel, calm and serene. This is my daily reminder of “peace personified”, our Special Ambassador Of Peace, right in our midst!

Merry Christmas to you and your loved ones- enjoy this precious time spent with family and friends! May the gift of true peace be yours this holiday season and beyond- God Bless you richly in 2019! Until we meet again- thanks for reading and see you next year! 😘❤️🎄

Thanksgiving is always the perfect time to count and reflect upon our many blessings as we enjoy this special day with family and/or friends. It’s something I try to be mindful of and this year is no exception. I wanted to take it a step further and write down EXACTLY what I am most thankful for. Having a written account makes me more appreciative of what I DO have, versus what I don’t have. I am able to literally “count my blessings”and can go back to this list anytime I need a reminder of how much I truly possess. There is no particular ranking or order; I just wrote down what came to mind after thoughtful reflection, so here it is:

I am most thankful for….

1. A roof over my head

2. Food on the table

3. My husband

4. My son

5. Cancer survivorship

6. Clean clothes

7. Hot showers

8. My car (it’s hard to get around NJ without one!)

9. Extended family

10. Good health

11. Good Friends

12. Brian’s school program and staff

13. Brian’s recreational activities, including camps

14. Brian’s good health (overall)

15. Brian’s easy going nature

16. Solitude

17. Exercise

18. Good books

19. Writing

20. Travel adventures

21. The Five Senses that are still working pretty well!

22. A good nights sleep

23. Coffee!!

24. Living in America

25. Modern medicine

26. Cherry cheesecake

27. Feelings

28. Bear hugs

29. The beach

30. Seeing the Grand Canyon

31. Belly Laughs

32. My Christian Faith

33. My Memory and Memories!

34. Brian’s Bear hugs!

35. Respite

36. Brian’s home therapists

37. The ability to give and receive love

38. Sunshine

39. The life lessons my parents taught me

40. Opportunities to make a difference in someone’s life

41. A fine Chardonnay wine

42. When Brian says “Mom” ❤️❤️

43. Unconditional love

44. Forgiveness

45. Hope

46. Each new day

47. Other special needs families

48. What the future holds

49. The ability to learn from my mistakes

50. The Power Of Prayer

51. Each new beginning

52. A sense of humor

53. Tears

54. Chocolate!

55. Lipstick ( #Revlon#625IcedAmethyst)

56. Hair color ( #BlondeAmbition)

57. Music

58. Singing

59. Being Brian’s Mom

60. The kindness of others

61. The splendor of Fall

62. Hiking in the mountains

63. Heaven

64. The opportunity to make amends

65. Detachment

66. Yankee candles

67. A hand to hold

68. A shoulder to cry on

69. A new hot water heater (early Thanksgiving present)

70. My guitar

71. Living in Germany

72. Learning German (though I forget most of it)

73. Texting (a time saver! 😊👍🏻)

74. No credit card debt

75. Paying bills on time

76. Health insurance

77. My original teeth (hey, you never know when things can change! 😁)

78. Nitrous oxide- I am SO grateful!!

79. Brian’s bus driver and bus aides

80. Good neighbors

81. Flannel PJs

82. Italian food- it is the BEST cuisine!

83. Sleeping in whenever possible

84. Visiting family in Ireland

85. The opportunity to be a teacher

86. The privilege of being a Mom

87. Our beloved cleaning lady, Grace, and her monthly magic!

88. Annual vacations at the beach

89. My husband’s sacrifices for our family

90. The volunteers in Brian’s life

91. Still having my beloved Mom here with us, 88 years young!

92. My beloved Dad who was simply the best!

93. No cooking on weekends! #Leftovers

94. A husband who likes to cook

95. Our quiet street

96. The ability to say NO sometimes when needed.

97. Healthy boundaries in personal relationships

98. Brian sleeping all night! 😊👍🏻

99. Chili in a crockpot on a cold night

100. A roaring fire to dream by…

May your personal blessings be many and hardships very few! Wishing you and your loved ones a wonderful Thanksgiving filled with laughter, good food, and great memories!

Until we meet again, thanks for reading!

🦃🍁🦃🍁🦃🍁🦃🍁🦃🍁🦃🍁🦃🍁🦃

You have heard the Chinese proverb: “A journey of a thousand miles begins with a single step”. In the special needs world, ” a journey of one mile often takes thousands of steps”- literally! Who knew that our kids lives could be broken down, analyzed, dissected, or evaluated in such a way, but Brian has certainly shown me how this is exactly the case, for better or worse. I never really thought that essential life skills could be broken down to the most basic steps, as we neurotypical types just automatically proceed when we do things, without ever thinking about it.

I do take things for granted sometimes and can forget the incredible amount of repetition and effort it takes for Brian to accomplish the smallest of things. I wish it wasn’t so hard for him; I sometimes struggle with the reality that Brian will always require lots of steps, of one kind or another, to accomplish the most simple tasks. So, in order to proceed, I have to pick my battles- “how important is it really?”, specifically, what things will Brian need to do/understand, versus what I would like him to accomplish? Sometimes the two are not mutually exclusive. Sometimes my pride gets in the way and my thinking gets distorted. Although well-intended, I have chosen the wrong priorities for my son in the past , based on what my heart would like for him and what I thought was necessary, instead of what will be most practical and important for him in the long run. Hope springs eternal, but the line between positive thinking and reality can become blurred. I continue to both struggle and learn, just like Brian. I’m glad that he is most patient with me, although I can’t say that I have always been so patient with him.

Brian’s school uses a teaching method called Applied Behavioral Analysis (ABA). ABA takes a basic skill and breaks it down into small steps for learning and mastery of the skill. Positive reinforcements are utilized for each step achieved and data is taken to record a student’s progress, so it’s easy to measure/track a student’s learning. ABA teaching does not work for everyone, but the small step/ repetitive approach has worked for Brian well overall. It’s a helpful way to determine exactly how Brian is learning, in conjunction with feedback from teachers and therapists, since Brian can’t tell me. He will most likely always require some type of ABA teaching for the rest of his life. There is no limit to the thousands of educational skills that can be taught, including vocational/ self help skills.

Like everything else, it has taken lots of time and data to see Brian’s true success with this type of teaching. Some skills are easier learned than others. Some have not been learned at all or never will be, despite the amount of time and effort. We continue to reassess, readjust, and move forward based on previous outcomes to the attainment of new goals. It’s a never- ending cycle. It’s also a blessing and a curse that will remain for a lifetime. Taking life one day at a time is critical. Having a sense of humor on this journey with our children is imperative, lest we take all that is required of us as parents a little too much to heart. I am constantly looking for those funny moments (even dark, humorous ones) as a means of coping and putting things in their proper perspective and it usually serves me well- at the very least I can laugh at some absurd things and get my mind off of what I can’t control, which is always preferred.

When I look back in review of my “thousand mile journey” with Brian so far, the steps have been infinite, slow, and often tedious. There have been moments that I have seriously questioned my sanity. There have also been times where I can hardly contain my elation and joy! This life tapestry with my son is rich in so much: belief, success, trauma, tragedy, disappointment, frustration, sorrow, and hope. This is the stuff that all of us experience in life, it keeps us moving forward on our own journeys, sometimes willingly, sometimes not. Our kids lives are exactly the same! Our tapestry is woven together with the strongest bonds of love, strand by strand, held together by faith and God’s grace. I don’t always agree with the pattern and will often question “why”? Perhaps the real question should be: “Why not?” and “You will see…” I am slowly learning that, step by step… it may take thousands of steps until mastery, but I have the best teacher in my son, and for that, I am truly grateful.❤️❤️

Thanks for reading- until we meet again! 😊

You’ve heard the expression, ” you can pick your friends, but you can’t pick your family”-‘ no truer words have ever been spoken! Sometimes, friends become our family instead, or you happen to be blessed with both the biological version and those who we choose to call “family”. In our case, we are most fortunate to have both a wonderful large extended family and a special group of friends who are just like family too.

I am one of 4 children and my husband is one of 5. Brian has 23 first cousins between both of our families and several more great cousins, second cousins, plus numerous aunts and uncles! They reside anywhere from 20 minutes away, to Australia, and everywhere in between! We don’t see our extended family as often as we would like to, but when we do, it really feels like we have arrived home. I’m so happy for Brian that he has the love and support of our families, particularly as an only child. We had hoped at one time that Brian would have had a sibling, but a miscarriage was our sign that this was not meant to be. In retrospect, everything ultimately worked out for the best, but it took time to come to this place of acceptance and grace. I am reminded every October of our angel who is in Heaven, who I will look forward to meeting one day… The heartache never quite goes away, as I still think every anniversary of what could have been, but it’s comforting to know that Brian will always have a guardian angel on his shoulder, along with many other loved ones in our extended families who have left this earth for eternal life.

Yesterday, we met our beautiful great niece, Charlotte, from Connecticut, along with our adorable great nephew, Max, from Australia, for the first time. It was a terrific celebration of family and fun! We loved holding these precious new family members and were reminded of how the strong bonds of love and faith are the glue that truly hold us all together. We may be separated by distance and time, but we are never far from one another in spirit. Plus social media is a huge help in keeping up with everyone’s progress! I am always amazed how our conversations with family continue, just like we were together the day before, and yesterday was no exception.

It was also so heartwarming to see Brian engage, observe,and enjoy the time with his Grandma, aunts, uncles, and cousins. He even used an unfamiliar bathroom with no problem, which is a milestone in itself! Brian has come a very long way from our first family events from years ago, where we often had to leave a venue after a short period of time because of severe sensory issues to sound, light, etc. Those times were so hard and added to our feelings of sadness, frustration, and isolation- I know many of you can relate! Now, our Brian can walk into a crowded room with gregarious family members like yesterday, and not be phased in the least by the sensory overload- we are so proud of him! It also feels so good for Jim and I now to have that ability to converse freely with our family, without the constant worry that Brian may melt down at any moment. Of course, Moms will always have eyes in the back of their heads to watch ( as well as excellent hearing specifically for their children) to make sure that their kids are OK, it’s just who we are! 🤣

The importance of our kids being “connected” with others, whether family or close friends, shouldn’t be underestimated. All humans are relational beings; it is the way we were created and especially those close relationships that we forge with others, give us strength, and often add meaning to our lives. Our special children have the same requirements and flourish when they know people care for them and love them. While education and vocational training is very important for our kids to learn (to the best of their abilities), social interactions are just as important, perhaps even more so. The ability to get along with others in social and work settings is probably one of the most important skills for any of us to learn. I see this as Brian’s greatest strength and would like for him to have opportunities to further develop this skill, hence the various activities that we expose Brian to, with the hope that he will also learn other skills along the way. Slowly, but surely, he continues to make his progress…

At the end of our lives here on earth, I don’t think it will really matter much on that final day how many possessions we accumulated, how smart we were, or what we accomplished during our time here. While these things are certainly admirable, in the end, it will be our families and friends who will be our most prized treasures. I know this is definitely how Brian looks at life based on his reactions to the people who mean so much to him. He is curiously indifferent to material things, has no agenda, and only wants to love and be loved- isn’t that the greatest gift of all that any one of us can truly hope for? I think Brian definitely has the right idea!

Until we meet again, thanks for reading!

Our children are gifts from God, specifically meant to be ours, and we are privileged to be their parents. Being a Mom, for me, has been a joy unlike no other. Conversely, I have also never experienced such intense pain and sorrow during this journey. While parenthood can certainly be extreme on either end of the emotional spectrum, there is also the mundane and predictable “in between.”It’s during an “average day” that I can take for granted or forget why I love Brian so much. We go through the daily routines, meet the necessary obligations, handle both the expected and unexpected challenges, then do it all over again the next day… so much time and effort are required, often leaving little energy and sometimes a bad attitude especially if we are overwhelmed, frustrated, and tired. At least that’s how I feel sometimes anyway.

I realize that I have to be very intentional with my positive thoughts and actions during those times, especially when I don’t feel like it . Being negative comes more naturally, yet you realize it’s better in the long run to live your life in a positive way. It’s like exercising a muscle that you know will be stronger if you use it, but actually doing the work to achieve this end takes a strong mindset, determination, and belief that the effort is worth it. History has shown me over and over again that this is certainly true. But sometimes a strong self-will is just not enough- I need a role model! I have always found such inspiration in my beloved Brian. He is the one who ultimately gets me back on track, shows me the way, and sets me straight by the genuine life that he leads daily with strength and grace. How I wish Brian could fully understand exactly what he means to me and how he has impacted my life for the better in a million different ways… If Brian were able to read, this is the letter I would write to him:

My Dearest Brian,

You are the BEST son a Mom could ever hope for! I love you so very much! I never thought that I would ever become a parent, then God gave me the best gift in you. I think you were pretty excited to join our family too, as you arrived a month ahead of schedule. What a surprise, so wonderful and very scary at the same time!

Dad and I were both very sad when we learned that you were born with Down syndrome, but that didn’t change how much we adored you from the moment we laid eyes on your beautiful face! You were feisty, hungry, and sleepy, just like any other infant. You loved to be held, enjoyed your baths, and were always so happy to be retrieved from your crib, regardless of the hour. We were so frightened when you had your open heart surgery at 3 months old, but you persevered and showed us how truly resilient and strong you really were, the first of many times in your young life that you would do so…

You endured lots of therapies, doctors, and a second diagnosis of autism. Our hearts were broken and fearful of what life would have in store for you as a result of your dual diagnosis . Those early years especially were very difficult, but once again, you have shown over time that you can overcome obstacles victoriously! You have been a role model for what CAN be, despite the very heavy burden that you will always carry. I wish your load was much lighter, Son, but you never complain. Your heart is pure and your spirit is joyful. You live and love literally in the moment whoever and wherever you are. You are at peace with yourself- a gift that many would pay dearly for if they could.

While we don’t know what the future holds for you, Dad and I know who holds your future- the same Heavenly Father who sent you to us over 15 years ago, to teach us, and mentor us, in being the best parents for you and what you need. While there is always room for improvement, Dad and I continue to try our best.

Thank you for understanding and loving us when we have been impatient and frustrated at times because of the challenges associated with your disabilities. Thank you for being patient with us when we make mistakes. Thank you for loving us for who we are and for teaching us what is important in this life: kindness, sacrifice, humor, and love. You are the personification of all these things, a true hero and role model. Thank you for making us better, less selfish people.

My beloved Brian, you will always be the song of my heart and my joy. I continue to pray for your health, protection, and happiness, and always will. God has given you a great purpose to fulfill in this life as His Ambassador Of Great Joy- so far, you have done a fabulous job! I look forward to seeing what else is in store for you, for whatever it is, you will do it so well and with all of your precious heart and spirit.

I love you,

Mom 😘😘😘❤️❤️❤️

Thanks for reading! Until we meet again next time😊

Disney Magic is truly a one of a kind thing that is best experienced with loved ones, especially children, who can offer a fresh perspective on what it means to be young at heart all over again. A few weeks ago, Jim, Brian, and I experienced 5 days of that special magic in the Magic Kingdom, Epcot, Hollywood Studios, and Animal Kingdom at Disney World . It was an adventure of mass proportions that had been months in the making. The preparation was similar to that of planning a Thanksgiving or Christmas feast: lots of details, organization, and time, were necessary prior to the actual event itself. Finally, The Big Day arrived when we traveled by plane (a first for Brian) to the Happiest Place On Earth!

There was an underlying concern for all of the potential things that could have gone wrong during our travel and stay in Florida. Brian likes his routines: new things are initially very off-putting to him and transitions can be quite challenging. I was most concerned about Brian’s first time traveling on an airplane, especially his ears on the descent. We never know exactly how our non-verbal children are feeling and Brian has a history of sinus and ear infections. As a former flight attendant, I saw many passengers suffer with incredible ear pain 10 minutes prior to landing and there was nothing that could be done. So, I packed Brian’s s chewy tubes, juice boxes, nose spray, and his beloved goldfish crackers exactly for this this purpose and hoped for the best. Fortunately, there were no ear issues on any of the flights! Brian absolutely loved the inflight experience, as a matter of fact, he was so mesmerized, that he had his little face practically plastered to the window for most of the flights, especially during takeoff and landing. Brian also did well overall with each of the new experiences during our time at Disney World. He was initially confused as we entered each new theme park, but not upset- this in itself was unprecedented! Brian quickly came to love the rides, shows, and especially the Disney characters- we did too! The complete 4D Sensory Experience that is trademark Disney was truly sensational no matter where we went. The visual and auditory experiences were incredible and the customer service was superb all around, two huge thumbs up!👍🏻👍🏻 One day, we hope to return and relive that special magic all over again- a very important “bucket list item” that we can now cross off our list.

Speaking of “bucket lists”, I have been reflecting on my own personal ” bucket list” ever since our adventure in Disney, with a renewed commitment to realize the additional items on that list. Life is truly too short. News headlines are often a stark reminder of how things can change in a heartbeat. The recent tragedy in upstate New York where the 20 people were killed instantly in the limo accident is just one reminder that tomorrow is not promised for anyone.

Before we became parents, we had more time, opportunity, and perhaps less responsibility to pursue those things that tapped into our talents and interests. Now, it is almost impossible to do because of numerous responsibilities, limitations of time, energy, finances, etc. Yet, we as special needs parents must somehow find a way to make this happen for our own personal fulfillment- life can also be very hard and long some days.. Periods of respite are an essential starting point; after all, parents need a physical and mental break. I am so grateful for those opportunities when Brian is in school or involved in extracurricular activities. It is good for him and good for me too. Yet, this is only the beginning and that is where a “bucket list” of things that fulfill the emotional/creative sides of ourselves is just as important as physical fulfillment.

My personal “bucket list” includes:

Exploring Italy, Spain, and Portugal

Visiting Alaska, Montana, Idaho, and the Pacific Northwest

Writing a book (either special needs or cancer survivor related)

Singing karaoke

Learning another language

Playing a new instrument- I play a basic guitar and an even more basic piano, but would like to learn more..

Participating in an acting/performing group ( currently doing that via a class at the Papermill Playhouse)

Reading a book each month that is NOT special needs related

Going back to Disney! 😊👍🏻

This list is evolving and is certainly not limited to the aforementioned. As you can see, the items on my list range from the very simple to the quite complex. Who knows what the future holds and when I will be able to actually accomplish all of these things, but I am determined to try! All work and no play makes Brenda very dull and sad, so it’s part of my personal mental health contract to make sure I pursue opportunities that will feed my mind, heart and soul. I will be a happier person and a better wife and Mom when I listen to my heart’s desires.

So, what does your “bucket list” look like? Perhaps some of the items include things like: going back to school, traveling to a new place, skydiving, owning your own business, or hiking the Appalachian Trail. It might be as simple as just going out to dinner and movie once a month or taking an art class. The items on your list don’t matter -your commitment to realizing your goals is what counts most. Carpe Diem!

Until we meet again, thanks for reading. 😊