It’s Time To Lighten Up With Laughter

“Humor is a prelude to faith and Laughter is the beginning of prayer.” -Reinhold Niebuhr

The world can certainly be a very negative, draining place, especially these days, and it can rob us all of joy and peace, IF we allow it to. It’s quite easy to get sucked into drama and dialogue that is ultimately destructive for those who participate, regardless of topic. Add our own personal challenges, along with those of our special children, and the end result can be one hot mess! We can easily become jaded and frustrated with situations and people that are beyond our control. Everyone experiences these moments of course, and we can expect more of the same in the future. The key is not to remain “stuck in the muck” indefinitely… Somehow for our own well being, as well as for those around us, especially our children, it behooves us to move forward and to “ let go” of those people and things which don’t enrich our lives in meaningful ways. Self forgiveness is also a very important part of self care that is imperative, I find, especially as I get older. All of us have and will continue to make mistakes for as long as we live, but if we can learn something from them, then there was a purpose for them to happen in the first place. Being true to ourselves is also essential and is the highest form of self respect. We can always simultaneously be respectful of others as well: we can choose to “agree to disagree” and recognize that this is OK and to be expected. Not everyone has to be our best friend, yet, we can still treat others different from ourselves with the same kindness and respect that we would hope to receive. Besides, we special parents already have too much going on at home with our kids to be sucked into situations that won’t matter days or weeks from now. It’s just not worth it!

I have found throughout my life, but especially since Brian was born, that cultivating a sense of humor and laughing often have been absolutely essential for my sanity/well being, and have also made all the difference in terms of how I live my life. Yes, there are indeed a lot of heartbreaking tragedies that happen each day. Each one of us will face personal adversities and will be knocked down for the count . I think it’s safe to say that most special parents feel that way as they raise their disabled children; it’s a very mixed bag of intense joy and sorrow that will last for a lifetime. Special families will always have hardships to face with their kids, some of which are beyond overwhelming.. That’s a harsh reality that I often struggle with, especially in moments of exhaustion, which is why having a sense of humor in the midst of these inevitable trials can make things a lot more bearable! Belly laughs, you know, the ones that make you cry and your stomach muscles hurt, is a powerful balm for the mind and heart. You feel mentally and physically better after experiencing one! I like to think of people and things that make me laugh and lighthearted. THIS is where I choose to place my focus, then my troubles don’t dominate my thoughts and are more manageable.

Today’s world certainly gives us many reasons to automatically become negative in our thinking, leaving no room for other healthier alternatives. It is tempting to take the bait, in light of Covid 19, family stressors, and the upcoming Winter. Collectively, these things have the power to really take us down and keep us “trapped”. It’s a horrible physical and mental place to reside in! One day this past May, I had literally opened my kitchen window, stuck my head outside, and let out my best primal scream out of frustration. Like the rest of the world, I was also so sick of being inside at home for so long and was feeling quite depressed . It actually felt quite good to release that stress, very therapeutic as a matter of fact, but certainly not a long term solution to my problem. To avoid primal screaming ( or much worse) from becoming a regular habit, I needed to think of alternative ways in which to handle my difficult circumstances while in the midst of them. Laughter and humor is a sure way to make things a lot better and it always has throughout my life. There is always at least something to make me laugh and very often multiple things. It’s all just a matter of desire and perspective!

There are humorous/ funny things that I can use daily to help me “ lighten up” and laugh, even in the midst of adversities. I encourage you to find those things that make you laugh, no matter what your circumstances are. It will make all the difference in your life perspective when you choose humor and laughter. Coping in general is so much easier with a sense of humor and detaching from problems that have the potential to consume your life is one of the many rewards. I especially love to watch funny movies, TV shows, and be with people who are upbeat and can make me laugh. Who doesn’t? We all know such programs and individuals and should take advantage of the gifts that they offer. Even better, is when we can offer the same sense of humor back to a friend who may really need it. Humor and laughter can be very contagious and should be something this is shared. Laughter is also medically proven to improve your health by releasing endorphins, those “feel good” chemicals, which are directly related to one’s well being. It’s amazing how our bodies are wired to heal and for wellness if we are willing to respond to the cues that are provided for our benefit. There are additional physical/ emotional and mental benefits to laughter, perhaps ones you have never considered before..

Reasons To Laugh A Lot! 🤣

1. When you laugh the immune system is boosted- a huge plus, especially right now with concern over Covid and other illnesses.

2. Physical pain can be reduced with laughter. I found this to be 100% true during post-surgical recoveries and chemo infusions. I read funny books, watched humorous shows, and actually found myself in funny situations with various medical personnel and patients during these otherwise very difficult times. The laughter helped so much!

3. Laughter can enhance organ function, when you take in deep oxygen, especially with belly laughs! 🤣🤣

4. Hearty laughter decreases blood pressure and heart rate. ❤️❤️😊😊

5. Laughter is a mood-enhancer, uplifting, game changer. I would never go anywhere without it!

6. Laughter can cultivate a great sense of humor and who doesn’t want that, especially in current times?

7. The “feel good “ chemical, Serotonin, is increased in the brain when we laugh, which leads to stress reduction and relaxation of muscles.

8. Laughter also reduces blood sugar levels in diabetics and non-diabetics alike. Laughter is truly the best medicine!

9. Laughter provides an emotional connection with others and is often the glue that keeps us together in our relationships. Having a sense of humor and finding reasons to laugh has made all the difference for my husband and I, especially during these unprecedented times. Otherwise, let’s face it, it would be too difficult to be home together long term like this!

10. Laughter is a contagion that you DO want to share with others! So many of us are struggling for various reasons right now and need hope, support, and quite frankly a good laugh to get us through the tough times. We all benefit when we can laugh at ourselves or together with others. I honestly would put laughter right up there in the number one position with love and very often the two are intertwined. 🤣❤️

As the holiday season approaches, there are many reasons to feel sorrow and despair, especially this year. This is certainly understandable and actually necessary, to feel the disappointment, anger, and grief over losses in our lives. Like you, I have experienced less than desirable circumstances and have had to go through the inevitable passage of pain in order to be free on the other side of my sadness. Laughter and humor have always been my constant companions through every hardship, though, and always will be..

Wishing you and your loved ones many reasons to always choose laughter and humor, even when there are as just as many reasons to cry and give up. May the laughter that you seek be a blessing to your heart, mind, and spirit. Share the laughter and be the humorous bright spot in someone’s day, for you may be exactly what that special parent who is struggling with their son or daughter needs at that very moment. Be the Laughter, Humor, and Hope!❤️🤣❤️🤣❤️🤣

Until next time, thanks for reading! 😊

100 Reasons To Be Grateful

I think the month of November should be declared “Gratitude Month”, a perfect segue to Thanksgiving in just a few weeks. In these particularly tumultuous times, we can all benefit from being grateful and exercising gratitude. It’s very easy to become ungrateful when things don’t go our way, or when we take for granted the riches that we do possess, because the end result when we do go down this path will be dissatisfaction and emptiness. This is particularly true when we acquire material possessions; the initial allure of having something new can be very exciting, but eventually these things loose their luster. We yearn for more “things” to fill us up until the next inevitable void that follows. We think the next new item, relationship, etc. will change the outcome, but it doesn’t happen, regardless of how often we try. It’s actually the definition of insanity when you really think about it: doing the same thing over and over again and still getting the same result, despite your conviction that things will definitely be different this time! I know that I have been certainly guilty of doing this on many occasions!

We eventually learn that “the void” we feel is actually a spiritual one, so no amount of possessions will ever satisfy the heart because it was never meant to in the first place! Heart and spiritual contentment comes from more concrete and lasting treasures that are priceless, ageless, and enduring. We have the opportunity to choose these gifts, which result in gratitude and a peace that fills the empty vacuum that each one of us possess. When given a choice, I will seek peace and contentment, for personal experience tells me that theses things are way more rewarding and enduring than material possessions. Don’t get me wrong- I love nice things just like everyone else- who doesn’t?! I just don’t place my hope or main focus on earthly treasures that are fleeting and will one day be gone and ultimately won’t matter. I have learned throughout my lifetime, that it is definitely possible to be grateful , regardless of how much or little I possess. Yes, it is a conscious choice and it is NOT always an easy one to make, but is it worth it? I would say with whole-hearted conviction: 💯 ABSOLUTELY! It is from this mindful place, that an “attitude of gratitude” is possible and where my top “100 Things I Grateful For” comes from:

100 Things I Am Grateful For

1. My Christian Faith- God’s love and grace help me to endure this earthly race- the rhyming here was just incidental, lol

2. My Family- To be blessed with a good family, both immediate and extended.

3. My Friends- Life is sweeter, funnier, and more bearable with friends- I am so fortunate to have the ones I do!

4. Brian’s Extended Special Needs Family- From the moment Brian was born, Jim and I have met many incredible special families, medical and educational professionals, as well as dedicated volunteers who have supported and guided us throughout this special needs journey. I thank God daily for all of them!

5. My health- I have had some ups and downs healthwise over the years, but am so lucky to be in good health at the moment- priceless!

6. My life experiences: education, work, and travel. I had the opportunity to try different careers, as well as travel, with a good education. I look forward to future travels and other life adventures!

7. Hot coffee-a definite daily MUST!

8. Chardonnay- chilled, please!

9. Chocolate 😊👍🏻

10. Belly Laughs

11. Sunsets- NEVER sunrises, I generally sleep through those, lol

12. Hiking/walks

13. Hot showers

14. Clean clothes

15. Brian’s smiles and deep hugs 😊😊😘😘

16. Sleep, which is definitely underrated!

17. To be an American🇺🇸

18. Home-cooked food

19. Ice cream 🍦

20. Fresh air

21. Music

22. Beautiful singing voices

23. Children’s laughter

24. Solitude

25. Tears

26. Modern Medicine

27. The sound of the school bus when it arrives to take Brian to school! 🎉😊👍🏻

28. Fresh Flowers

29. Baked Bread

30. Italian Food – my favorite!

31. Campfires

32. My home

33. Scented candles

34. Prayers

35. The Beach

36. Air travel

37. My Mom’s advice ❤️❤️

38. My Dad’s guidance – even from Heaven now❤️❤️

39. Heaven- my eternal home

40. A good read

41. Jokes- all kinds, especially the practical ones! 🤣

42. Grace and Wisdom

43. A sense of humor- an elixir for whatever ails you!

44. Leftovers 😊👍🏻

45. Netflix- especially during Covid!

46. Fall Foliage

47. Dairy Queen Blizzards

48. My church community

49. Serendipity

50. Random acts of kindness

51. Peace

52. Choices

53. Freedom

54. Comedy

55. Opportunities

56. Writing as catharsis

57. Hope

58. Costco- no joke! What a store!

59. Snow on the trees

60. A roaring fireplace

61. Hair color – a necessary self-indulgence

62. Handwritten letters/cards

63. Facebook- especially for social connection during these isolating times

64. iPads, iPhones – the technology is amazing for everyone, especially the disabled!

65. The future and the possibilities it holds

66. A shoulder- both to lean and cry on

67. Cherry cheesecake

68. My 5 senses, which are definitely changing as I age, but still working! 😊👍🏻

69. My teeth – so far, I have all my original ones! 😁

70. Opportunities to share time, resources, and hope with others

71. Meaningful conversations

72. A regular routine, especially right now!

73. Brian’s joy when he accomplishes something and knows it!

74. Respite ❤️❤️❤️❤️

75. People who believe in Brian and are determined to help him learn, despite the challenges that he presents. #EternallyGrateful

76. A big slice of chocolate cake

77. Water- the ultimate life source for everything

78. Being Jim’s Wife

79. Being Brian’s Mom

80. Great neighbors

81. Reliable and fair-priced contractors

82. The ability to experience and express a range of emotions: joy, sorrow, love, anger, etc

83. Adversity that has made me stronger and a more compassionate person

84. Naps- whenever I can take one!

85. Last minute travel adventures

86. Mercy

87. Forgiveness

88. Each new day, aka, new opportunities

89. Honesty

90. Flannel sheets

91. Breakfast in bed

92. Meditation

93. A positive attitude

94. The ability to learn from my mistakes

95. Girls Nites Out! ( or mornings/afternoons)

96. I’m never to old to learn something new

97. A good cry

98. Physical exercise

99. Words of encouragement

100. Inspiration- it’s all around us!

I’m sure you can come up with your own gratitude list and would encourage you to do so! It’s not only a good exercise for the mind, but it’s also a wonderful reminder that there are always things to be grateful for, despite these uncertain times that may tell us otherwise. I pray all of us can maintain an attitude of gratitude through the trials and tribulations of life, for it is truly our best defense against despair. May you and your loved ones be blessed abundantly with the things that truly matter- Happy Early Thanksgiving! Until next time, thanks for reading! 😊

We Are Survivors!

It is time to pat ourselves on the back! We deserve huge accolades, applause, and high fives for all that we do on behalf of our disabled children. This blog is for us- the Moms and Dads, aka: The Survivors and Thrivers in this often crazy and “never a dull moment” life that we share with our special children. Sometimes, I will reflect on the past 17+ years with Brian and wonder how exactly did I accomplish so much on behalf of my son? I don’t know exactly how, but love and determination are the main reasons as to why. Both are powerful forces to be reckoned with and have been essential. I also made a conscious decision to persist, despite the obstacles and setbacks, which have been many along the way. Sometimes things have not worked out the way I hoped for Brian, but when looking back on the situation at a later time, it actually worked out for the best and there was always a lesson to be learned, if I was willing and open to receive it.

A survivor is defined as “ a person who copes well with difficulties in their life”. There are many types of survivors: perhaps you also wear another “survivor hat”, besides one for special needs parenting. Special needs parents automatically become survivors from the moment their disabled children are born. We really don’t have a choice if we are to endure this life long marathon with our kids. In the early years, when we were younger and our kids were smaller, our endurance was stronger. Now, I find the opposite to be true, yet Brian is developmentally still a toddler in many ways and always will be to a certain degree. You can imagine the incredible amounts of patience and time that are required for Brian to achieve the simplest of tasks. I don’t always cope well with these truths; you can be sure there are many mornings when I would prefer to hide under the bed covers. It’s hard to face a repetitive 14 hour day on a Saturday, for example, which is why my husband and I try to get Brian out in the community on weekends to do different things. Such outings are good for all of us mentally and physically, but require contingency planning and packing for all potential scenarios, because you have to be prepared for sudden changes when you have an autistic child. Yes, my husband and I are exhausted by sunset, but like Brian, we are ultimately resilient. It is our nightly prayer that we always remain so for our son’s sake..

Here’s what a typical Saturday looks like for us. Keep in mind that most of the following activities take several minutes to accomplish and require verbal/gestural prompting and hand-over-hand assistance. Brian needs physical assistance with all self care and activities of daily living.

Brian’s Saturday Schedule:

7:00am -8:00am- Wake up, bathroom, get cereal/juice, put dishes in dishwasher , brushing teeth, getting dressed

8:00am- 8:15am – socks, orthotics, and shoes are retrieved and put on

8:15am- 8:45am – make up the bed, put away laundry

8:45am- 9:15am -Brian watches TV

9:15am-10am- Exercise ( walking in the neighborhood or on the treadmill)

10am-10:30am- Snack/Bathroom break

10:30am- 11am- Put clean dishes away/ do laundry

11am- 11:30am- Read Books, aka, Mom or Dad read several books to Brian!

11:30am- 12:00- iPad break

12:00pm- 1:00pm- Lunch: make sandwich, retrieve drink, snacks, cleanup, bathroom

1pm- 5pm -Recreational activity in the community

5pm-6pm- set the table for dinner, watch TV

6pm- 7pm- Dinner time and cleanup

7pm- 8:30pm- Movie time

8:30pm- 9:15pm-book reading, prayers, bedtime routine

The aforementioned has been Brian’s weekend schedule for a long time. Prior to Covid 19, he had participated in special needs recreational activities on the weekends, but of course, these things have been put on hold for the time being. As a result, the weekends can feel endless if we don’t have plans in place. We have been most fortunate this Fall, as the beautiful weather has afforded us many opportunities to be out and about in various places. However, this will be coming to an end shortly as the weather gets colder and the days shorter. My husband and I will need to put our recreational thinking caps back on to come up with other things to do once it is too cold to be outside. Many special families are in the same boat and it is not easy. In fact, I’m dreading being indoors indefinitely, as Winter can seem to drag on forever. We will need to muster all of our strength and creativity in order to cope with what lies ahead, just like we always do, year after year. Yes, we are survivors indeed, despite the frustrations, repetition, and patience that is required for the special needs life. We are sometimes knocked down, but thankfully, not knocked out. We cope, we believe, and we achieve, despite our exhaustion, because our kids need so much! We adapt, in spite of those unbearable moments when I was ready to run away from home ( on more than one occasion). It is during these dark times that I am reminded that my son is a survivor too. He copes with endless challenges related to his disabilities every moment, of every day. Brian accepts his situation, doesn’t complain, and soldiers on. Never have I witnessed such incredible resilience, as I watch my son often painstakingly get through his obstacles. He keeps on keeping on- THIS is what ultimately inspires me to do the very same.

Special needs parenting can be a “just getting by” type of survivorship, (especially with difficulties and mundane things), but it can also be something that transforms our experience as parents for the better. We have fought the good fight with our kids and FINALLY they are able to achieve something that we never thought would happen! For example: Brian was a very late walker; he took his first independent steps (without hand holding) at 5 years old. I witnessed Brian taking his very first steps towards me when he got off his school bus one afternoon. I will never forget that incredible moment! It took a tremendous amount of effort via physical therapy, early intervention, preschool, medical appointments, and time for this milestone to finally happen. There had even been concern that Brian had a spinal issue which precluded him from walking, but thank goodness the neurosurgeon ruled out any abnormalities. My heart sang and my spirit was transformed by this major event! It was the beginning of deeply appreciating every one of Brian’s future achievements, big or small, for I knew just how hard and long it took for him to take that first independent step.

The feeling of gratitude and joy for each of our children’s successes can be an incredible experience. We know exactly what our kids go through; we also know the struggle is real for them, as much as it is for us. Nothing comes easy for disabled children; they have to work very hard for everything that they achieve. It is unfair for sure, but it’s an opportunity to also see how time, practice, patience, and love can positively impact how our children learn and progress, each in their own way and time, according to their individual abilities and interests. It is so exciting to witness that magical moment of achievement, when FINALLY all the months/years of persistence have payed off! We have survived the ordeal and the reward is so worth it, each and every time!

Yes, indeed, we are not only Survivors of the Special Needs Journey, but we are also: Problem- Solvers, Advocates, Cheerleaders, Recreation Directors, Speech, Occupational and Physical Therapists, IEP Specialists, Medical Specialists, Life Skill Teachers, and Vocational Educators. Who knew we would have to be so versatile, that so much would be expected? Despite ourselves, we’ve learned a lot and have become quite proficient in these various roles, mostly by necessity. As long as these things help our child, the effort is always worth it, but the longing for simpler times will always remain. At the end of the day, I really just want to be Brian’s Mom, but I know deep down that Brian’s ultimate success in life is directly related to my willingness to take on these additional roles that will help him to achieve this goal. I am willing, but my flesh is often weak, so survivorship becomes paramount for the long, intense haul. I draw strength mostly from other special parent survivors, especially those who go before me with older disabled children, learning constantly from their acquired wisdom and years of experience. Their honesty is refreshing, the situations they and their children endure are often overwhelming, but there is also hope, a deep love, and a resilience that is also inspiring. We are truly all in this together!

Wishing you, my Special Needs Soul Survivor, all the strength, love, and grace that you will need for this life long journey with your son or daughter. Your child has taught you over and over again just how incredibly strong and passionate you are about EVERYTHING that has to do with them, even when you don’t feel that way. Somehow you continue to cope and forge ahead with great courage , especially when the odds are against you and your child’s disabilities are just too much to bear. You may lose battles, but you will NEVER lose the war. You may temporarily give up- you are only human after all… But inevitably, you pick yourself back up and keep on keeping on for your child, because that’s what Mama and Papa bears do. Now THAT is true love!❤️❤️❤️

Until next time, thanks for reading! 😊

10 Personal Truths About Down syndrome and autism

Having a child with a dual diagnosis of Down syndrome and autism is something I could have never imagined before having Brian. If you told me years ago that one day I would have a son with these complex conditions, I would have said you’re crazy and that it would never happen. In my perfect world, I only knew typical, healthy children, even though my undergraduate degree from college was in special education. Ironically, I had volunteered with, babysat, taught, and was a camp counselor for children with disabilities starting at the age of 14. During this time, I was able to separate my work life from my personal life. Never in my wildest dreams did I ever imagine actually parenting a disabled child, for that was for other people, I only chose to work with this population and fully expected to live my own life the way I wanted to.

We may make our life plans, but sometimes, God has different plans altogether for us. These plans may not be what we had hoped for or wanted, in fact, that was definitely how I felt about Brian’s disabilities , especially in the early years. I was angry back then and asked God “why?!” I had already worked with disabled children, wasn’t that enough?! Why did you allow this to happen? How am I going to do this? You ask too much of me! For a long time, I was scared, angry, isolated, and a victim. I would go through the motions of motherhood and made sure that all of Brian’s needs were met, but in my heart I was often bitter about my lot in life and resentful to be a member of a club that I wanted no part of. It would take another life-altering event to finally wake me up. I had finally come to the end of myself.

When I was diagnosed with colon cancer in 2009, I came to grips with my own mortality for the first time and had the realization that my 6 year old son could possibly lose his Mom if surgery and chemo were not ultimately successful. Finally, I woke up and grew up at the same time. Many precious times with Brian that I took for granted up until that moment suddenly meant everything to me. My focus and heart shifted to where they needed to be: being fully present with Brian and kicking cancer to the curb with all of my determination and strength. God gave me the grace to endure the whole ordeal; there was no other way to get through it. I was also blessed with incredible doctors, nurses, family, and friends, my angels from Heaven, who supported me and loved me through this journey until the last CAT scan at Year 5, when I was officially declared “cured”.

It’s hard to describe just how incredible it is to hear such wonderful news! All of the treatment, side effects, and waiting for test results made this moment especially poignant. My heart and spirit had also been cured of a resentment and bitterness, replaced with a compassion and a new appreciation for my life. Because of cancer, I became a new creation with a renewed purpose and appreciation for what I DID have, despite the illness, as well as the disappointments, difficulties, and heartaches in raising a disabled son. For the first time, my perspective was that of a “ half glass full” versus a “half glass empty” mentality. I can’t tell you the numerous times when this line of thinking has come in very handy. In fact, I can’t imagine going through life’s challenges without CHOOSING a positive attitude. It’s definitely not an automatic choice, in fact, I often have to work at it, but the alternative is no longer appealing. I will do anything now to maintain joy and peace of mind, despite the difficulties, and have found that it is truly possible when you trust God with everything in your life and give your problems over to Him, every moment, of every day..

As a result of this eventful life that I lead, I have become quite the student of Brian over the years and can say that I have earned a PhD in Brianology! This doctoral distinction gives me special credentials as Brian’s Mom, knowing him better than anyone else, yet, because of his dual diagnosis, he is still a mystery to me, a new territory that is yet to be explored. It’s the curious dichotomy of being with someone all the time, yet you don’t know everything about them. My detective and observational skills have been heightened/sharpened since Brian’s arrival into the world, yet over 17 years later, I am still learning and being surprised by my handsome, complex son. Down syndrome and autism profoundly effect the way my son communicates, thinks, and learns , so it takes a lot of people, effort, and time for progress to ultimately occur, but it does! I have had to adjust my preconceived notions of what progress means from Brian’s perspective. It has taken me time and many lessons, but I think I’m finally starting to get the hang of it! Down syndrome and autism have a lot to teach when one is willing and ready to learn the inevitable lessons that will follow. Here are the truths I have personally learned so far about Down syndrome and autism:

1. Down syndrome and autism can be heartbreaking and a mystery. No matter what I do or try, sometimes there is no solution for the challenge at hand and I must accept that and move forward.

2. Down syndrome and autism makes you extremely grateful for your own abilities and reminds you never to take little things for granted .

3. Down syndrome and autism would have been akin to a death sentence a few decades ago for those afflicted and their families, but individuals with the dual diagnosis can lead full, meaningful lives with the proper supports, resources, and life experiences. Brian is living proof! 😊

4. Down syndrome and autism cause me great concern about Brian’s future as an adult, so I try to plan ahead as best I can, yet still live in the present moment. It’s not always easy and sometimes becomes harder as Brian gets older.

5. My son’s Down syndrome and autism is not the same as your son’s dual diagnosis. Each of our children are both unique in this regard, with certain similarities, but also with many differences.

6. Down syndrome and autism have made me: cry, laugh, feel depressed, hopeful, and resourceful. I never knew I could experience such a range of emotions, sometimes all together in one day!

7. Children who have Down syndrome and autism are very different than those children who have either Down syndrome or autism . Our kids fall somewhere in the “gray zone”; they are unique and are “differently-abled” in many more complex ways. I felt that I arrived in Beirut versus Holland once Brian was officially diagnosed with both disabilities at 30 months old.

8. Down syndrome and autism have been a burden , but Brian, especially, as well as my husband and myself, are determined to not let it have the upper hand in the way we live our lives, despite the hardships that it brings on all levels imaginable.

9. Down syndrome and autism have revealed an inner strength, advocating abilities, and a resolve that I never knew existed within myself. I am often a mess, but I am also a strong Mama Bear who only wants the best for her son and will do whatever it takes to help him live his best life.

10. Down syndrome and autism is a part of Brian, but it doesn’t define WHO he is, my beautiful, loving, resilient, quirky, and complex son. Despite the challenges and exhaustion, I have the privilege of raising one of God’s special children who loves, hugs, and laughs with all of his pure heart, my forever boy. How many 17 year olds freely give their parents genuine bear hugs and kisses? For these gifts, and so much more, I am forever grateful..❤️❤️❤️❤️

Until next time, thanks for reading! 😊

The Case For Kindness

There is no doubt that 2020 will go down in history as one of the most stressful and politically polarized years ever. The corona virus in particular has exacerbated our lives on every level imaginable. We all know many friends, as well as family members, who were directly impacted by this horrible virus. Most of them eventually recovered from Covid 19, but some tragically did not, leaving intense grief, sorrow, and anger in the aftermath. Life as we once knew it has been radically altered with a desperate desire for normalcy once more. Being locked down at home certainly does not help our stress either and perhaps gives us too much time to think about things and to be on social media.

Don’t get me wrong- social media has been a blessing in terms of staying connected with loved ones and friends during this turbulent time. We definitely feel less isolated as a result and I am grateful for it. As a matter of fact, I find Facebook to be an excellent diversion and it often lifts up my spirits. I especially love the photos and positive/humorous posts. But there are also the negative comments, the “virtual” debates with complete strangers ( which baffles me!) that become nasty, especially as it pertains to politics. I’ve also seen similar posts in special need groups, which is particularly disheartening, as we parents already have enough on our plates with our disabled children so the last thing we need is to feel judged. Sometimes words can also be misinterpreted and taken the wrong way, which can certainly happen if your child is having an especially hard time and you are operating on minimal sleep.

The last thing we want to feel when we use social media as a means of expression is invalidation or minimization. Each one of us certainly has a right to express an opinion on whatever the topic is, whether it’s related to special needs, climate change, or the upcoming presidential election. And there is certainly enough opinions on both sides of the fence for discussions on everything that could probably last for days! Thank goodness we live in a country that allows freedom of speech and may we never lose this right! However, I do find the level of vitriol/ disrespect if someone doesn’t agree with your particular point of view on social media quite appalling! Unfortunately there is as much strife as there is the “good stuff” to the point where some days I have taken a break from social media altogether. Yet, it doesn’t have to be this way: we really can get along “virtually” if we go back to some valuable lessons that we learned as children and implement them accordingly.

Remember “ if you have nothing nice to say, say nothing at all”? I do remember learning this as a child, a good lesson in showing respect towards

others, especially when you disagree with them. Sometimes it’s just not worth the effort to start a debate on a topic that you know will end badly. It really depends on who is involved, and what your motives are: how important is it really? Often it’s not worth the argument. However, if you feel the subject deserves attention and can express your opinion without tearing down the other person in the process, especially in a public forum, that’s ideal. Many times, though, we will have to “ agree to disagree”- this has certainly been my personal mantra , and I actually expect it, as we diverse humans are the sum of our many varied experiences. I have found if there is a particular topic that I’m particularly passionate about, I will contact the individual privately to continue the discussion if they are interested. If they are not, that’s OK too, then it’s time to “let it go” as Elsa from Frozen says.

Sometimes, though, no what matter what we try, it just may be best to “scroll on by”! Or we can change our settings in Facebook to filter what we see on our newsfeed. We can select our friends and let the strangers or former “friends”go. It’s OK if people don’t agree with us and we can often still be friends when we practice mutual respect. We should take Charles Dudley Warner’s words to heart: “ politics ( or fill in the blank with whatever topic you wish) make strange bedfellows”. There is a reason why this sage advice still holds true over 100 years later. Life is too short to be wasted on something that won’t matter next week, or even tomorrow . Sometimes, the discussion is just not worth having and it’s best to “agree to disagree”.

Suppose we are more intentional with kindness and helpfulness in cyberspace instead? I immediately gravitate towards those posts and want to learn more and be uplifted. I look forward to going on Facebook because of extraordinary people I know who are so clever, inspirational , determined, and humorous. Sometimes a shared meme or a photo is just what my mind and heart needed in that particular moment . Kindness brings out our best side and relieves stress. Kindness doesn’t have a political or religious affiliation and is for everyone who wants to receive it and share it. Kindness is a gift that we give ourselves, especially when we share it with others. What our world really needs now is random acts of kindness, big or small, to alleviate the sadness of so many who are hurting right at the moment.

We may forget what someone says or does for us, but we will never forget how someone makes us feel. Kindness in all forms, on all social platforms, has the power to inspire, change our attitudes, perspective, and hearts, even if it doesn’t change our minds. It’s a movement we can all be a part of and doesn’t cost anything. Kindness only requires willingness and an expectation of the good, which is always the result. Kindness is the one contagion that we don’t have to be afraid of. Kindness can virtually and literally make our world a better place, especially in the words that we choose when speaking to others, as well as our actions towards them.

Kindness is a conscious choice that we can all agree on and it can make our current situations a little easier to bear. I try to practice kindness daily and have discovered that when I do so, my day goes so much better. By getting the focus off myself, I feel physically energized, and my mind dwells on positive things, which is what I want to feed it with. Most importantly, helping others who may need a dose of kindness can make all the difference between a good or a bad day. It is a privilege and a blessing to have such opportunities to give, as well to receive kindness from others, during our times of need as well. Yes, our literal and virtual world can never have enough kindness in it!

May your days be filled with serendipitous moments of kindness of the giving and receiving kind. May we always remember that our words can be a balm to heal the wounded spirit or cutting like a knife to the heart and that we always have a choice of which words we will use. Finally, may we be blessed tenfold by our acts of kindness and continue to pay it forward.

Until next time, thanks for reading! 😊


9 Top Self Care Essentials For Special Needs Parents

We dedicate our lives and resources to helping our disabled children live their best lives. This is no small feat and requires a tremendous amount of time, sacrifice, and effort. This intense labor of love can slowly erode our sensibilities and physicality if we are not careful. I would have never guessed prior to having my son, Brian, exactly how much would be necessary to raise a special needs child or how intense the journey would be. I would have never dreamed that Brian would still be doing certain things or exhibiting particular behaviors that toddlers are noted for, yet, 17 years later, here we are in that same place and always will be. Of course there is progress as well, but not in the ways that I would have ever thought would happen when Brian was first born. So, as Brian continually learns in his own way and time, adapting to changes and transitions every day, so must I. Regardless of whether it’s a good or bad day for our kids, we always have to be prepared mentally and physically to help them today, tomorrow, and for the rest of their lives. It’s a huge responsibility, a heavy weight, and many days unimaginable to me, especially as I get older. Living in the here and now with Brian is more than enough each day. I hope to make it into the future,( some days are too overwhelming to even consider beyond the next hour) but in order for that to happen, I have to find a way of living well in the present, one day at a time.

Before we became parents, we had careers, hobbies, interests, and dreams. Some of us may still be able to do these things and simultaneously raise a disabled child, but for many of us, our “former lives” were put on indefinite hold once our children were born. There was no time to do activities outside of the special needs realm, as our children needed our full attention for medical and educational reasons. We are still going at an incredible pace, despite the addition of resources and people along the way to help us, and our former lives are just a distant memory. Some of us may still work outside of the home, leaving us with very little time, if any, for ourselves. We are multi-tasking, marathon, advocating warriors! We seem invincible, and actually, we are for quite a while, until one day, BOOM! We have hit another brick wall of special needs parenting, but this time, we are unable to climb over it.

Nothing can make one hit a brick wall quicker than raising a severely disabled child during a pandemic, especially during the first 3 months of Covid 19. Endless hours of being indoors and virtual learning almost drove me to the mental edge. I discovered that hitting this particular brick wall was actually a blessing in disguise later on, though certainly not when it initially happened. So, I was faced with the options of either “ lying down” for the rest of the pandemic or “getting up”. I really wanted to remain lying down, in a fetal position specifically at first, but luckily had enough resolve left to know that this was not what I REALLY wanted, it just felt that way in that particular moment. But I also knew that things were going to have to change and only I could make those changes for myself. This was the difficult part- how to do I proceed when I’ve put my own needs on the back burner for so long? Also how does one do self-care on a regular basis while raising a disabled child who needs so much?

I didn’t have the answer to those questions, but I knew it had to happen somehow AND as a permanent life change so I could avoid hitting brick walls going forward. Then I thought about prior to having Brian what I enjoyed in the past and how I could possibly incorporate some of those things back into my life today. Was this possible? Yes! Would it be easy? Absolutely not! Will Brian and I benefit from such changes, even little ones, for the better? 100% affirmative! My Top 9 Essentials were born as a result of this, my blueprint for living my best life, moment by moment. These are things that all of us already know and love, but perhaps we have just forgotten them in the midst of trying times while caring for our kids.

Essential #1: Friends

Through thick and thin, highs and lows, no one knows us better or can offer us more support than our friends. Sometimes, family members are also our close friends, but more often, the friends we choose end up being like family. Brian has

introduced me to many wonderful special needs parents over the years , one of the blessings of his disability. I also love my other friends from my past and present, whether we met in school, work, or through a hobby. Friendship is one of the most precious gifts in life that is essential to our well being.

Essential #2: Hobbies/Interests

Remember these? It seems like a million years ago, but once upon a time, we were able to participate in activities on a regular basis that were fun! I used to love hiking with the Appalachian Mountain Club, cycling, the weekly bowling league, or an adult school music class after work. My favorite hobby was to travel both in and outside of the United States. There are so many wonderful places to explore and I was most fortunate to have had this opportunity. While international travel is no longer an option (at least for the moment), there are still many opportunities to see, even local places of beauty, and I make it a priority to visit them.

Essential #3: Dreams

I believe we should never stop dreaming of what is possible in life and make a plan to achieve our hearts desires over time . For example, I have had this dream that one day I will make a cross country trip throughout the United States and will see the places I’ve always wanted to visit. There would be a ton of logistics to work out beforehand and this adventure is certainly not feasible at the moment, however, is it possible one day? Yes it is! I have begun my research to make it happen ! The other dream I have is for Brian, which was inspired recently by another special needs mom. My friend told me that she plans to create a business for her disabled son so that he has viable employment upon completion of school. She has ideas and a vision of what it would look like and is starting to create a business plan. I was truly inspired by this and it got me thinking whether I could do something similar for Brian. I have no idea what this will look like at the moment, but I would love to help Brian find his “niche” and am dreaming about the possibilities now, not ruling anything out…

Essential #4: A Therapist

Don’t underestimate the power of an objective listener, especially when life gets too difficult to handle alone. I admit that I was initially very stubborn and proud to seek professional counseling during critical times in my life, but eventually the situation would get the best of me and I had no choice. It was the best decision I ever made! I have been the recipient of sage advice before and after Brian was born and am definitely the better for it! Sometimes, family and friends are too close to ultimately be helpful. Sometimes, you just want to be heard, and taught how to use the tools that you already have within you to heal. Therapists have excellent tools to accomplish this goal!

Essential #5: A Doctor

Similar to Essential #4, our physical selves are often in need of healing and require medical intervention. Since we have a huge task in caring for our kids, we have to take care of ourselves first. That means preventative medicine: not missing doctor appointments, following through with physician recommendations, eating well, etc. Our kids are really counting on us to be there for them and this important self care will make that possible.

Essential #6: Distractions

I’m a huge believer in distractions that come in all shapes and sizes: a good read, a great joke, a mindless TV program, virtually anything that gives your mind a rest from your troubles and a focus on fun! We need copious amounts of lighthearted distractions daily as we live the special needs life- I can’t do without them!

Essential #7: Laughter/Humor

One of the most important essentials in the special needs parents “tool box” is a sense of humor. As much as there have been difficult/ frustrating times with our kids, there have also been funny moments with them too.

We need to find humor and should seek it always, no matter what life brings. We can always find a reason to laugh if we are willing . Our bodies and mind will appreciate it too and we will often be the better for it.

Essential #8: Sleep

Sleep, Wonderful Sleep! I want you to know how much I have missed you in recent nights. Please don’t elude me; I need you more than ever! It is impossible to raise my son or function in general without you. I look forward to reuniting with you again very soon. I am currently pursuing various solutions to see what will ultimately work best. You are my most important essential at the moment. Signed, Sleep Deprived ( But Not For Long)

Essential #9: Hair Color (Or Whatever Truly Floats Your Boat)

I realize that hair color is not everyone’s priority, but I have always loved going to the hair salon. I know many ladies can relate to this important essential. There is something about this ritual that is so relaxing and you just feel better when you’ve had your hair cut/ colored and styled. This is my “every 6 week essential” and is right up there with sleep! I would also add lipstick as an essential, although there’s been little of that lately due to mask wearing, but this definitely is my favorite fashion combo.

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Letting Go for Serenity’s Sake- It’s All A Matter Of Faith

“God, grant me the serenity to accept the things I cannot change, courage to change the things I can, and the wisdom to know the difference.”

The above Serenity Prayer is one of my all time favorites and it never loses its power. Courage, Wisdom, and Serenity, 3 priceless treasures that I desire in my life. Regardless of who you are, what you believe, or your life experiences, at some point, you will need a power greater than yourself to endure very difficult circumstances, whether it’s the effects from a global pandemic, or raising a special needs child. I have learned this the hard way. Talk about feeling out of control , isolated, and frustrated! Our attempts to control our personal situations in order to make them better, especially during this unprecedented time, can sometimes be futile and beyond our grasp. We learn over time that despite our good intentions, we can actually be in the way of progress and the peace that we seek.

I have definitely struggled with feeling out of control, especially over the past 6 months. Humans are relational, so we are not used to being home so much or having restrictions when we do go out . Remote special education learning especially, has been very challenging for many families. Eventually, “this too shall pass”, but in the meantime, I still have my days when I raise my hands to Heaven and say “Serenity Now!!” particularly during those moments of isolation and frustration with Brian, when we are both so tired of the virtual routine. It also seems in no time, I also have a messy house once again, a mountain of laundry, an almost empty fridge. Yes, I do need serenity NOW!! I can so easily get overwhelmed and don’t always multi-task so well. I’m used to being “in charge” and am fiercely self-reliant, perhaps too much so..

We live in a world that values self-reliance independence, and “taking charge”. At the moment, it seems like these attributes have been put on hold due to COVID-19 and it feels very unsettling. As special needs parents, we must constantly “take charge” on behalf of our children who are depending on us to do so, regardless of an ongoing pandemic or not. It is the price of advocacy that must be paid in order for our kids to realize all of the resources that they will need in order for them to live their best life. This constant advocating is exhausting to say the least, but the deep love for our children keeps us going. Over the years, I’ve had to learn to pick my battles when advocating on Brian’s behalf, and let the rest go. Relinquishing control of things that won’t really matter in the long run anyway is for the best, but it certainly hasn’t been easy.

When you really think about it, control is truly just an illusion, it makes us feel like we are in charge of our lives, but the reality couldn’t be further from the truth. We can control people or things as much as we can demand the sky to turn green. As much as I wish that I could control the circumstances in my life the way I think they should be, (as it would certainly make daily living much easier), I cannot, but there is something I CAN do: exercise my freedom of choice and ultimately trust that all things will work together for the good, even when it doesn’t always appear that way. I can chose to believe that I am making the best decision at the time with the information that I have, then “let it go”. Boy, is that difficult to do! Fear rears it’s ugly head and you start to doubt your abilities, thinking you are going to make a horrible mistake-sometimes that is exactly what ends up happening, yet, we can learn from the experience. But there inevitably comes a point when you get tired of feeling fearful, carrying your burdens, and frustrated by your efforts that may or may not have made a difference anyway.

There is no doubt that raising a special needs child can invoke huge fear. I have certainly felt that many times over the years and still do. Our kids don’t come with manuals, so we are students of our children, trying to figure out who they are and what they need. We depend upon so many people to help us help our kids, that it can be both relieving and overwhelming. This is our children’s legacy and always will be, so how do we cope with this lifetime mission? There will be many circumstances along the way that will test our character and resilience as we help our children, situations that will force us to face ourselves, our actions, and our limitations. There will also be that moment when we realize that we can’t control things or do everything on our own. I have discovered that there is a lot of freedom and peace that comes with this awareness and ultimate acceptance.

In 2009, I was literally brought to my knees due to personal circumstances in my life that had knocked the wind right out of my sails. I was at home at the time recovering from colon cancer surgery when one afternoon, I felt a huge weight on my chest. I was having severe angst over chemotherapy that was to start in a few weeks. What I thought was initially a heart attack, was in reality a severe anxiety attack and I felt the most overwhelming sense of doom and gloom. The feeling was like a roof caving in; I was trapped, and unable to move. In retrospect, I was clearly at the end of my proverbial rope; the colon cancer, Brian’s needs, and my husband’s unemployment at the time, finally hit me all at once. I remember begging God to release me from the physical and mental anguish that I felt. I don’t remember exactly how long I was on my knees in prayer, but there was a remarkable peace that followed this episode. Although my circumstances hadn’t changed, my perspective had, and the overwhelming anxiety had dissapated. It was truly a life saving moment for me!

To make a long story short, this new found peace and assurance that God is ALWAYS with me, no matter what, has enabled me to go through life and face what comes, because I am not alone in my struggles . Now, of course I still complain a LOT when difficulties do happen, but the difference is, I am now free from the self-imposed expectation from my past that always said that “you are responsible for EVERYTHING, and mistakes aren’t allowed.” How ridiculous was that?! I know it’s crazy thinking! The first lesson that I learned right after Brian was born, was that special needs parenting is definitely not for perfectionists. It was an ongoing lesson that I’ve had to learn many times over the years.

At first, it was an intentional/ literal choosing of asking for God’s guidance and help, not just with Brian, but in every part of my life. Then the intentional changed to the natural very gradually over time, because I was ready and willing to take little baby steps in faith. The rewards have been great and have often exceeded my expectations, in terms of the people and resources placed in my life. It is not a coincidence that these gifts have always come along just at the moment when I’ve needed them most. I have learned that I just need to be willing, open, and trust God for the rest. He has not let me down, although I often wish His timing didn’t take so long with things,. Without God’s grace and help, it is too hard and virtually impossible to endure the inevitable trials that will come. I am beyond blessed to be a cancer survivor, my husband eventually found an even better job than the previous one, and Brian continues to thrive and live a life that he loves. Yes, the struggles will continue and are often painful, but I no longer carry my burdens alone and actually never did! I also may not know what the future holds, (and that is actually OK) but I do know who holds the future! I’m so glad that I’m not in charge, for I wouldn’t want that job!

Wishing you many blessings and “the peace that passes all understanding” in the midst of your current trials- you are truly not alone! Until next time, thanks for reading! 😊

t

M

Our

A Birthday Love Letter

Brian will celebrate his 17th birthday this week and I have been thinking a lot about what the past 17 years have meant to me as his Mom. Like most parents, I have had a multitude of experiences during this time with my special son that have been exhilarating, frightening, frustrating, and loving, sometimes all at once! I can’t imagine not being Brian’s Mom, while sometimes wishing on certain overwhelming days that God didn’t expect so much… It’s a privilege to be a parent and to have that ability to influence and raise little human beings entrusted to your care. It’s also a huge responsibility and sometimes a burden , where it’s no longer “all about me”, rather, “it’s all about thee”. Yet, I think it’s safe to say that most of us couldn’t imagine our lives without our children, for better or for worse. They are forever a part of us and add a richness to our lives, reminding us daily of what is important, loving, and genuine.

The challenges of both Down syndrome and autism prevent Brian from speaking, reading, or writing. It was a tough blow in the beginning to accept these truths and the life-long implications for Brian as a result are clear. I still become whimsical from time to time, wishing that Brian and I could have a conversation. I dream about those talks sometimes, or how Brian could read his favorite stories, and write down his thoughts on any given topic. I know that I am projecting a part of myself, thinking that Brian would want to do these same things had he been a typical kid. Of course, that may or may not have been true anyway, but still, that longing is always there. This is especially true during challenging times when I see Brian so frustrated and unable to speak what’s on his mind. If only I knew what it was, I could make things better. Speech apps on the IPad can only communicate so many words. Yet, despite himself, Brian has actually learned to become pretty proficient with his “talker” and has become a better listener/“communicator” over the past few years. His receptive language has increased and just when I think he either doesn’t understand or is not paying attention, Brian proves me wrong almost every time!

For every challenge in Brian’s life, there have also been as many victories. I am proud of my son’s resilience and how he handles everything that is thrown at him with incredible grace and strength. He soldiers on, never holding a grudge, or expecting anything, with the exception of being fed, loved, and cared for. Brian’s joy is the real deal, as much as his displeasure and fear are, especially when it comes to sensory things or transitions. Reflecting on all of these things, I want to express to my beloved Brian on the completion of almost 17 eventful years what his birthday, his life, means to me. Somehow, I believe he already knows the things I’m about to say..

Dearest Brian,

It is incomprehensible that you will be turning 17 years old in a few days. How and when did this happen?! My brain is having difficulty imagining this major milestone in your life. So much has changed over the years for you , yet simultaneously a lot of things have remained exactly the same and always will. Regardless of what has transpired in your past, present, or future, you remain steadfast, strong, and a loving human being that I am so very proud to call my son. I often marvel at your overall good nature in the midst of your trials. I have learned so much from you, carefully watching your actions and reactions, to people, places, and things. I sometimes don’t know how you continue to persevere with your disabilities , but inevitably you do, with grace and a determination that is beyond admirable.

I love everything about you from your beautiful blue eyes to your pronated ankles and have taken a special delight in what truly makes you happy. You are a simple young man who loves simple life pleasures: food, music, people, movies, your Ipad and of course copious amounts of water. You continue to teach me that a life can be well-lived whether we are on a great adventure or doing nothing at all. I am so proud of your willingness to try new things now; years ago that would have never happened! New adventures are still scary, but you work through your fears and usually end up accepting the situation and often have fun. I wish many more life adventures for you, my Brian, and it is Dad’s and my mission to expose you to as many as we can.

Thank you, Son, for teaching me to be stronger than I ever thought I could be. Your open heart surgery at 3 months, orchiopexy at 18 months, ear tubes at 3 years old, eye surgery at 11 years old, and back brace for scoliosis for over 2 years were so hard to witness. Then my colon cancer diagnosis came along, as well as Dad’s job loss, and his prostrate cancer diagnosis. Some days my heart felt so broken for you that I thought it would break altogether.. I couldn’t believe how you managed to get through your medical challenges so strong, so accepting, and so determined.. You inspired Dad and I to do the very same by your courage and resilience, so that we also, could face our adversities. What incredible gifts from a beautiful boy! Thank you for showing us that there is still beauty in the ashes of life, even when we don’t always believe it or feel that way..

Brian Michael, you are a treasure and my heart, the miracle baby that I never thought I would have. I had resigned myself to thinking that I would never have children, but God obviously had other plans and you even arrived a month ahead of schedule! Some things are just meant to be. Granted, you were not necessarily the son that I had expected, and I was quite overwhelmed by your disabilities, especially in the early years. However, these past 17 years with you has shown me that your story is not a tragedy, rather, it is a complex/ genuine/ challenging/ intense love story that is victorious because of the choices that we have made together, despite the things that are out of our control. The outcomes and endings could have been very different, but overall, I think you would agree that your life is one of great value, meaning, and love and we wouldn’t have it any other way.

As you begin your 18th year of life this week, I wish that the desires of your precious heart will be fulfilled in this new year. I wish you continued joy, strength, and love, especially in the tough times ahead. I pray that you, Dad, and I can continue to make new memories that we can all treasure together. I pray that God will protect you from head to toe with good health and give you the grace that you will need to live your best life. Thank you for being our most prized possession and for the joy that you continue to bring to our lives and to all who are so fortunate to know you. Our lives are forever changed for the good because of you! Happy Birthday, Beautiful Boy! 🎉🎉❤️❤️😘😘

All My Love,

Mom 😘😘😘😘😘❤️❤️❤️❤️

A Mother’s Guilt Never Goes On Vacation-Except At The Jersey Shore!

Covid 19 has reaked havoc on so many levels over the past 4 months, creating unimaginable stressors and circumstances for everyone. Some families have been directly effected by this awful virus by losing loved ones to it. Others have lost jobs, marriages are struggling, and many of us are depressed by events that are out of our control. It’s hard to fathom now when we greeted 2020 in January, that our lives as we knew them, would be turned upside down and inside out just a few months later. It’s been mentally and physically exhausting, to say the least.

Thank goodness for warmer weather now and small glimmers of hope, as restrictions are slowly being lifted in our area. Although this is not the reality for certain areas of the country at the moment, we can see how proper social distancing, masks, and hand hygiene will result in more opportunities to do things outside of the house. It’s amazing how going to the drive thru at Dunkin Donuts now qualifies as an official/ daily “road trip”. Or how food shopping has become an exciting way to actually SEE PEOPLE and talk to them in person through masks at a social distance . More recently, we can add our town pool to the list of social distance opportunities with friends that we see there. It has done my heart so much good to see these pool pals, albeit from at least 6 feet away, but I no longer feel like the island I was surely becoming. This is a very good thing for us, especially Brian, who is quite social in his own way, despite being non-verbal. Water and waving to others are 2 of his most favorite things ( if you don’t count music and snacks of course). Simple, Summer pleasures under the sun never tasted so sweet!

You can probably tell that I have made my peace with , at least for the most part, being home for so long. What choice do any of us really have ? But actually, we do- bitter or better. I was becoming bitter about our current situation to the point where it was effecting my physical and mental health. I decided to try choosing “better” at that point, but it’s definitely not easy, in fact, it’s really hard! There is still the daily struggle in making “better” choices throughout the day, with constant temptations along the way to default back to “bitter”. I am a work in progress in terms of accepting what I can’t control and letting it all go, but I’m getting “ better”. Focusing on things that really matter is my ongoing mission. There is one issue in particular, however, that continues to be a thorn in my side, long before Covid 19 arrived, (despite choosing “better” more often than not, for the past 17 years): Mothers Guilt.

Moms, you know exactly what I’m talking about! My guilt started during my pregnancy with Brian when I was told at 18 weeks along that be had a large hole in his heart. What did I do to cause this? I berated myself for drinking a weekly glass of wine with dinner, for that surely must have been the reason! I know how irrational that sounds, but I was afraid. More markers along the pregnancy indicated Down syndrome and deep down I knew that Brian had it, so it really wasn’t a surprise when the doctors confirmed it when he was born. I had a brief reprieve from “Mothers Guilt” until early intervention started- that was truly both an eye opener and game changer that brought Mothers Guilt to a whole new level.

They say not to compare your disabled child to other children, which is very wise advice, but, the reality is, you can’t help doing so when you see your child amongst other children. It was apparent during Brian’s early intervention years that his journey of development was not only slower than his peers at his special school, but it was also very unusual, with “quirky” behaviors and what I learned to be “over” as well as “under” reactions to the world. I had no clue at that time as to what was going on, and felt guilty that I couldn’t find a solution, especially as a former special educator . It was a very lonely time for sure. Ultimately, I was inspired by God’s grace one evening to research “ Down syndrome and autism”. You can imagine my shock when I discovered that there was even such a diagnosis back in 2005. Then our real journey with Brian began..

Over the past 15 years, there have been many opportunities to feel guilty: Brian is not getting enough speech, occupational or physical therapy . This was actually the case both at home and school initially, so I had to advocate for extra services ( a whole blog of it’s own ). Here’s another: if only I would have done more of the OT, PT, SP exercises at home, surely that would help Brian achieve more. Well, yes and no- there is no doubt that parental involvement is paramount to a child’s success, but every child develops in their own time with resources and supports. I learned that in college- how could I not remember? Shame on me! Grieving losses of what could have been is often packaged as guilt of what “should have been done”. Acceptance of what truly is as a special needs parent takes copious amounts of grace and self forgiveness. These are the biggest lessons that I continue to learn. It is truly a marathon, not a race. Perfectionists need not apply for special needs parenting…

Rolling the tape forward to the present time, virtual learning has resurrected those guilty feelings once again. I want to give Brian opportunities to learn and support the school staff, so we give this new mode of learning the old college try. The reviews are mixed: a little success, depending on the day, but overall ineffective for him. I’m not motivated by this outcome to go further, so of course I feel guilty about that , especially when the staff is trying so hard. Plus what if Brian has a learning breakthrough and we miss it? Guilty! So we tried- a little- why not more? At least it was better than not trying at all. Then there was the planning of the rest of the day- boy, did I really come to appreciate school days even more! It’s hard to be a solo act when trying to keep your disabled son engaged when he needs constant attention and prompting to do things. Thank goodness there was some home therapy too a few days a week. Of course, I was unable to be 6 people in one and eventually burned out from physical exhaustion and guilt. On and on this mental madness went on for several weeks until I finally hit a brick wall at the end of June. Brian had the time of his life at that point when I had no objections to unlimited iPad videos and movies for a few days- it was totally unprecedented! Of course I felt guilty and in desperate need of a break: a shore vacation came just at the right time this year. We had planned months ago to go away when we thought Brian was going to overnight camp, so we were very fortunate to still have the original reservation. I couldn’t get away quick enough! At that point, i would have driven anywhere, just for a change of venue and routine.

We had a wonderful beach vacation last week. The ocean was the perfect elixir for everything… I could look at it forever! Our accommodations, the restaurants, the beach, the weather, etc, was great. It was a simple time of sleeping in, walking long distances on the boardwalk , reading fun fiction by the ocean/pool, eating outdoors, repeat, for 7 days. There was no mention of special education in any capacity during our time away; it was strictly verboten and the best thing that happened. I was amazed that not one guilty thought or impulse crossed my mind, it was truly unprecedented! It was a bummer of course to leave this paradise at the end of the week, but I was so glad to come out healthier, more rational, and more well rested on the other side.

It has been an adjustment this week for sure, getting back to “reality” of more virtual learning, home therapy, and more of the “same old routine”. There will always be an ongoing battle with me and Guilt as far as Brian is concerned, as situations will continue to present themselves, BUT my guilt-o-meter is not as elevated as before… I believe our time at the beach reminded me of the importance of the basics: sleep, eating well, and doing NOTHING. These things are perfect and fine to do whether you’re at the beach or at home. That is a good lesson to learn, especially during this pandemic. And our kids should also have down moments too, for they need them just as much to replenish their batteries…

Wishing all the Special Mommas many moments of refreshment, rest, and downtime whenever and however possible, especially during this pandemic, for we truly need them! Our kids will benefit from our self care too and need us to be our healthiest for them. As Stuart Smalley from Saturday Night Live said during his self-affirmations while looking in the mirror; “I’m good enough, I’m smart enough, and gosh, people like me”! No truer words have been spoken!

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Let Freedom Ring!

Brian’s “virtual learning” for the regular school year has concluded, though there was nothing “regular” about these past 3 months at all. In fact, Brian was generally disinterested by this medium of learning and would communicate this quite often! He would attempt to turn off these Zoom sessions on multiple occasions and look away from the screen, as though to say “ I can’t see you”. On a few occasions, that is exactly what happened, when we were unable to connect with therapists and/or hear what they were saying, resulting in Brian getting up and going into another room. Technology can certainly have its limitations and I don’t blame Brian for his reaction. After several weeks, he was done with learning in a way that did not make any sense to him in most instances, and quite frankly, so was I.

There were also moments over the past 3 months when I was conflicted, riddled with guilt, as much as I was impatient and frustrated. I wanted Brian to glean something useful from these virtual sessions. I also had high hopes initially when I went through the huge manila packet of worksheets that came home in Brian’s backpack the last day of school in March. “ Maybe there will be some activities that we can do together”, I thought, as I perused the enclosed materials. By the time I reviewed the last pages of the packet, I realized that the chances of learning success for Brian with what was in front of me were slim to none. Yet, I didn’t want to have a negative attitude before we even got started. So, Brian and I gave it the “old college try” for a full 5 days. The result was minimal/ fleeting participation from Brian, (complete with his signature heavy sighs), while I did almost everything hand-over-hand with him. There were more verbal prompts then should have been allowed by law! We were more than done at that point.

Yet, I completely understand the rationale as to why the materials were sent home. School staff had to provide something quickly to students before the pandemic officially locked us all down in our homes. We’ve all seen worksheets before and have completed them ourselves as students, sometime during our educational experience. But for many special needs students, like Brian, they mean absolutely nothing and are a waste of time So, we continued to persevere in virtual learning, as I also wanted to support the school staff for all of their heroic efforts in trying to virtually teach a multitude of needs and abilities via group learning sessions and individual ones- what an impossible task! I have no doubt that the teachers and therapists were often as frustrated as parents and students were for both the same, as well as different reasons. All of us are trying to brave through this new, unchartered territory. While we certainly had some virtual successes, (much to my pleasant surprise), I have to say that overall the whole experience for us was a dismal failure. What remained were many days of frustrations, unmet IEP goals, and the uncertainty as to when our kids will finally go back to school. I am clearly unqualified to be Brian’s teacher, aide, and therapists all rolled into one person. It’s unrealistic anyway and quite candidly, being his Mom is more than enough for me.

Like many parents, I am looking for an endpoint, a deadline, as to when our children will finally go back to school. I was quite hopeful, like many, as we saw restrictions being lifted, more things opening up, less Covid hospitalizations, etc. A light at the end of such a challenging tunnel is always cause for great hope and propels us to “keep on, keeping on”. Our governor even announced last week that school districts could offer in person Summer school, virtual learning, or a hybrid of both. I see a light! This was beyond exciting and the information that many families were hoping to finally hear! Then less than a week later, this hopeful news of on-site learning ends up being a false alarm and unattainable after all. Permission was given, but not the proper guidelines/tools to make it happen, so back to virtual learning we go. Another epic failure that continues to marginalize the educational needs of most disabled students. Even worse, not one word has been said so far about going back to school in September or what the game plan is in order to make that happen. Even a “preliminary” plan would be better than no plan at all, which makes me wonder if that is indeed THE plan…

I understand that not everyone is comfortable in sending their children to school now, or even in the Fall and beyond. I also recognize that some hold different points of view regarding how the road to “Operation Back To School” should be implemented. Every family has unique needs, concerns, and ideas as to how this should happen, as it should be! However, each one of us should also have choices and the freedom to chose, as we see fit, the education of our disabled children, based on their unique needs. Virtual learning doesn’t work for the majority of disabled students, so onsite learning should also be offered as an option for those who wish to pursue it. Some private school programs are offering both virtual and onsite programs this Summer and I applaud them for leading the charge. Yes, this should be done carefully/ methodically. We can all agree that masks, hand-washing, social distancing, and taking temperatures are the right things to do. Yes, it will take time for students and staff alike to make things work and it won’t be easy at first. But, I believe that those schools which choose to proceed this Summer with hybrid programs will have a distinct advantage over those schools who wait until the Fall (or later). These schools will be able to see what is working or not, and continue to fine tune health protocols/procedures as they go along, according to their students specific needs, yet within the stated guidelines. These schools will be more prepared for the Fall, because of the extra time that they took over the Summer.

This surreal experience over the last 3 months should be an important lesson for all parents to make sure to keep a watchful eye on their disabled child’s educational rights, that they are never undermined, regardless of world circumstances or distractions. Our kids are really counting on us to always be that persistent voice that ensures their freedoms, educational and otherwise. It is a huge burden that comes with a heavy price, but a necessity for the rest of their lives. I wish it wasn’t so hard, particularly in times like these, and especially because it doesn’t have to be! There should never be only a “one size fits all” solution for any challenge, nor should only one choice be imposed upon everyone. In the case of special education, one way of teaching is not individualizing instruction according to need, it is the complete antithesis of it. This approach is a set up for failure of achievements every time.

Despite my frustrations, I try to remain positive, as is my nature. I am hopeful that with time, things will continue to get better on all fronts. Restrictions are being lifted, Summer is almost here, and our vacation at the beach starts next weekend, a respite Jim, Brian, and I desperately need and are looking forward to. My husband and I will continue to persevere on Brian’s behalf and hope that our educational leaders will do the right thing for the students entrusted to them, especially for the Fall and beyond…Can you hear it? The school bell is ringing and will not be silenced until the doors reopen for students. Let educational freedom ring for those who are ready to exercise this right on behalf of their special children. They are entitled to an appropriate education according to their individual needs and should have choices in accomplishing this aim. It is the right thing to do- anything less, is unacceptable.

On a final, more upbeat note, a very Happy Fathers Day to those wonderful Dads, Uncles, Nephews, Brothers, and Friends who mean everything to our children…❤️❤️❤️ You are a blessing and deserve huge accolades for all that you do, every day!

Until next time, thanks for reading! 😊