These days, every meal is like “The Last Supper” as far as Brian is concerned. His appetite is voracious, with a bottomless pit that never ceases to amaze! Puberty and youth are the perfect storm for such a siting. I remember those days so well when I could eat like that and never gain an ounce, ah, to being young like that again! Brian has certainly inherited my capacity for mass quantities of grub, for better or for worse. 

Once upon a time, Brian couldn’t be in the same room with different textured foods, let alone eat them. He would scream bloody murder at the mere suggestion of some new food , no matter how small or how far away it was on the table. I was both horrified and fascinated at the same time- how can this kid not like toast or pizza? Forget about cake or cookies at that time. And don’t even think of offering the generic version of Cheerios- only the original will do! How can one make THAT differentiation?! There were many days that I  thought Brian was  destined to eat Cheerios, French fries, and yogurt for the rest of his life. Despite our best efforts, nothing seemed to be working. It was so frustrating! I was really concerned Brian would be more prone to illness, with such a limited diet at that time. He had already been struggling with multiple sinus/ear infections, and colds.

But like everything else in Brian’s life that is “ new”, as far as he was concerned, he required LOTS of time and small pieces of evidence in order to be convinced that “it” is OK, acceptable, and in this case, tasty. So, we did many food “trials” over the years, ever so slowly, and with lots of practice, patience, and behavioral reinforcements. We began to make some progress over the years, continued to expand upon our success, food by food, bite by bite. When adolescence arrived, Brian’s hunger increased, and he was more motivated to try new foods, despite the visual and tactile sensory aversion to them. Somehow, he seemed to gain some self-confidence too in this culinary journey. Now, he has no “off button” for toast or pizza, or several other foods for that matter!

Don’t get me wrong- Brian will not automatically eat any  “New” food-even now. He continues to be quite wary of its appearance, very tentative of its texture/flavor, BUT, he will at least try the smallest of bites. He has really come a long way from the meal meltdowns of not so long ago. I understand more why this is so- not only do some children with special needs have sensory challenges with eating, but people with Down syndrome in particular, have chewing challenges due to their low muscle tone and compromised  oral/motor musculature. As a result, they have a heightened “gag reflex”and are more prone to choking. We often have to remind Brian to take small bites, chew his food, slow down, etc.  Our kids like to sometimes “stuff food”- it feels good to do so! ( I must confess to the group that I love to stuff a stack of Pringle’s potato chips in my mouth- there is something about that Big Crunch/Flavor that is so appealing!).

Brian still does not eat ice cream ( too cold), candy of any kind ( the texture does not agree with him),or fresh fruit, ( the “slimy” texture causes him to gag, yet he loves many veggies, go figure!)but unlike the old days, I am much more relaxed about his eating habits. At some point, he will probably LOVE ice cream and candy, (where we could have another problem!)and he may even one day be willing to eat an apple slice. In the meantime, there is applesauce, and he will eat mandarin oranges or mashed fruit in yogurt. I’ll take whatever he is willing to try!

Good nutrition is paramount to a strong immune system, but there are also excellent supplements to support our picky eaters when their diets are limited. There is always hope for improvement in this regard, but we parents have to give ourselves (and our kids) a lot of slack, regardless of the outcome. Heck, my  older neuro-typical brother is  still a picky eater (especially with veggies) and somehow, he has made it through life just fine! Quite frankly, we have too many other fish to fry with our kids that requires our undivided attention and energy. Speaking of fish, Brian remarkably eats salmon now, so you just never know how or when our kids will surprise us with their food choices.

Brian’s willingness to try and eventually enjoy new foods over a long period of time has also coincided with his ability to now sit with us ( and extended family  and/or friends) during meal times. We are now able to go out to restaurants and actually enjoy our meals together. No more crying at the dinner table or being prisoners at home because we had to leave the restaurant, me in tears often along with Brian. I know many of you can relate to these things and can appreciate how incredible these accomplishments are. The highs are higher and the lows are definitely lower in our world!

And what a better time for our kids to enjoy culinary delights, regardless of what they are, than this upcoming weekend, as many of us will celebrate Passover or Easter with family and/or friends. One of life’s greatest pleasures is to sit and enjoy food  with our loved ones, a ritual as old as the hills. There was a time that Brian could not sit at the table during the holidays, but that too, has become a thing of the past. He does not linger too long after eating, in fact, he gets up, pushes his chair in, then proceeds to watch TV or play with his iPad, just like the other kids…❤️❤️

Wishing everyone a very blessed holiday this weekend and much success on their food journeys with their children, one bite at a time….

Until we meet again, thanks for reading! 😊❤️

During one of Brian’s recent medical appointments, I was chatting with one of the nurses while we were waiting to see the doctor. She mentioned in passing how much health care has changed, as well as her role,  and eventually commented  how lucky I was that I didn’t have to work outside of the home anymore. “Actually, I quipped, “I do work both inside and outside of my home and work just as hard as before, the only difference now is that I don’t get paid for it”.  This lovely lady was clearly puzzled by my response. Let me explain…

I had worked as a full time professional for almost 20 years before Brian’s birth in various fields and capacities , including: flight attendant, pharmaceutical sales rep, medical education project manager, a special educator in the public school setting, (and more recently  a special needs teacher in our state’s Early Intervention system).Variety has always been the spice of my life and I enjoyed the rigors of these positions. The hours on the job for each were long, often intense, sometimes frustrating,( just like any job), but generally satisfying. I also earned my Masters degree in the evening while working full time.  I’m glad that I had the opportunity to try different careers and to go to graduate school during this phase of my life . But being Executive Director of Brian McDonnell, Inc. has been the most challenging, sometimes extremely frustrating, yet very rewarding, as far as “jobs”go.

I  still marvel how my world has gone from previously traveling around  the globe, to presently traveling around town most days. Life can certainly be unpredictable, filled with its twists and turns, and often with lessons to learn along the way. I have learned so much from my  many mistakes and triumphs throughout this journey, especially the current one that’s exclusively with Brian.

Sometimes, however, I do miss the freedom of the old days and will be struck by wanderlust to explore beyond the confines of local roads. I will coincidentally have an opportunity this year to travel, first with friends, then a separate trip to Disney World with my husband and Brian.  These are great things to look forward to and all of us need  a break from time to time for our mental sanity and for physical rest. But until then, there is a daily routine that must followed for both Brian’s benefit and my own. In the special needs world, I know that I am in good company in this regard.

I have calculated that I have 14 hour “work days” from the moment I get up, until I sit  down in the evening after Brian goes to bed.  First shift is during the day starting in the morning, until Brian comes home from school. During this time, I help Brian get ready, make breakfast, pack lunches do household chores, shopping, and any communication, advocacy,  research, as it relates to Brian’s well being. Communication, whether it be written or conversational, is time- consuming. In between, I try to get a quick workout in and help my Mom with her errands/medical appointments a day or two per week. It’s amazing how quickly the 6 hours elapse while Brian is at school! Before I know it, the bus aide calls to say they have arrived back at our house.

Second shift begins after school when Brian is home, which is pretty much helping him until bedtime with all aspects of his routines. When the home therapist come after school for a few hours, I am often doing volunteer work for Brian’s school, catching up on more correspondence with his school, social, or medical contacts, filling out countless forms for camps, etc. Then comes making dinner, clean-up, stories, Brian’s bedtime routine, then done- whew! I am tired and usually ready for sleep myself! 

Every family has unique circumstances that warrant an arrangement that works best for them. In our situation, my husband was always the primary breadwinner- had the roles been reversed, he would have been Brian’s primary caretaker and Domestic Engineer, while I worked outside of the home. Jim works hard and long hours so  that I can be home for Brian. We usually don’t see him until close to Brian’s bedtime. Some work days are later than that, plus he travels frequently overnight  for his job- this is the down side with a lot of corporations, lots of hours away from the  family. However, the up side is that I am on call for Brian 24/7- whether it’s school vacations, snow days, (this winter was particularly brutal!) or for illness. Brian has a lot of all of the above, so Jim can have peace of mind that I am there to mange things like this as they occur, no matter where he is.

It would be difficult to find a caretaker who could manage all of Brian’s particular  needs especially during those critical times of the day: before the school bus in the morning and after school. This is a struggle for many single and 2  parent income families- parents have to be out the door for work first thing in the morning and they need care for their special needs child then, as well as  after school.

Or what happens when your child suddenly gets sick and you have an important business meeting? Don’t forget school breaks and summer vacation. Not everyone is equipped to handle our kids unique needs. Good, reliable people are hard to find. Some families I know have extended family who can help. Others rely on trustworthy friends or neighbors. 

Employers are not always understanding of a special needs situation at home either. Sometimes people lose their jobs because they used all of their allotted vacation days to take care of their sick child. Some Moms would love to stay home, but can’t afford to. Others want to work,  but it’s so hard to find a job with the hours that mirror our kids schedules and that would allow for very flexible hours that we ( and they) need. I suppose a part-time job with  these specifications would be ideal with plenty of personal days to spare. There are sometimes no easy solutions.

As you can see, all Moms are working, whether in the office, or on the home front, with hired help, or the Moms are the help. Both scenarios have pros and cons to them,  both also require a lot of understanding, negotiation, and support from employers, spouses, caretakers, and extended family. Moms are the leader of the band! So much is expected from us because we  often make it look so easy and get so much done.

Raising a child with significant disabilities is a job that requires me to be at home for my son because he needs me to be there for him. There is a lot to manage in Brian’s life and I see that it will only become more complex and time-consuming as he gets older. My workplace just happens to be my homeplace, with long hours, and constant demands, but…I wouldn’t want it any other way. 😊

Thanks for reading! Until we meet again, many blessings on you and yours!😘😘

 

Last week, I had an opportunity to share my journey as a special needs caretaker to the United Way Caregivers Coalition Of Morris County.  Boy, was I nervous! I consider myself to be more of a writer than a presenter, but was proud of myself for actually trying, as I hadn’t done any  public speaking since college. Even better that I actually made some sense! Here is the transcript from that day…

My name is Brenda McDonnell and I am the primary caretaker of my son, Brian, who was born with Down syndrome, then diagnosed with autism at 30 months old. Brian is now 14.5 years old, and the light of my life! Brian will always require caretaking and his needs are many and varied. I have been a caretaker for both of  my parents as it pertained to their physical and emotional health, but nothing compares to the daily caretaking of a child with special needs. It is a lifetime assignment that requires great physical, emotional, and spiritual strength.

Nothing ever quite prepares you to be a parent either, as I quickly learned when Brian was born, despite the many books I voraciously read ahead of time. I was on bedrest in the hospital for a month prior to Brian’s birth and had lots of time to read and contemplate what motherhood would be like. The perception and actual reality of this experience couldn’t have been more different. Brian’s arrival into the world was a mixture of great joy, sadness, and fear, of both the unknown and what my husband and I knew would be challenging. 

Brian was born with a large hole in his heart that required open heart surgery at 3 months old. And so our eventful journey began with a plethora of appointments, sleep deprivation, and learning step-by-step how to take care of this precious baby. More medical issues were to follow, then learning the ropes of Early Intervention Therapies, Special Education, social activities for special needs, etc. So much to learn and navigate through-and  it continues to be an experience like no other! 

Brian is my best teacher and has demonstrated through his incredible resilience and sweet nature how to be courageous and strong many times over these past 14+ years, especially when I have been often  afraid and heartbroken. If you had  asked me when Brian was first born what I had envisioned parenting a child with special needs was going to be like, I would have never imagined it was going to be this hard. I didn’t realize that  the smallest of achievements would always  be so monumental in our world.  And who would have ever guessed that my son  would still need assistance in the bathroom at 14 years old?  I never thought in my wildest dreams that Brian would be non-verbal either- how is this even possible when he comes from a long line of gregarious talkers? And on and on the list goes..

I also never imagined that I could or would be the advocate that I am today for my son. By the grace of God, the support of other local special needs families, and through the encouragement of my husband, family, and Brian himself, I am able to forge ahead. Brian has a rich, full life with educational and social opportunities. I go to sleep most nights at peace, knowing that everything is being done to help Brian live his best life, at least for the present time. The future is what is really scary. We specifically moved to a particular area to provide those opportunities for Brian. It has and always will take a lot of people and resources to help us, help Brian.

Of course there is a high price to be paid for caretaking and advocating over a long period of time.  Physical and emotional depletion are inevitable, especially after many years. There are many days when I still feel very overwhelmed by Brian’s needs and am afraid of the future, especially when my husband and I are no longer here. The challenges threaten to overtake the day, yet they can not ultimately be victorious. I may lose the battle ( which has happened numerous times), but I can not lose the war- Brian is counting on me. Daily self-care is a must- did you know that my caregiving needs come in a convenient” 6-pack” ?! Here they are:😊👍🏻 

Brenda’s Caregiving Needs

1. Respite- a break in any form/ for any length of time counts and is necessary for recharging physically/mentally

2. Sleep- a very basic need, but often underrated for its amazing effect on energy and perspective 

3. Reading-A good book is my mental escape, especially when the going gets tough- I try to read something not Special- Ed related every day for 30 minutes- it really helps me to stay in the present moment!

4. Exercise- Planet Fitness is less than 2 miles from my home- exercising even 30 minutes, 2x per week, changes my mental outlook

5. Gal Pals- Loyal girlfriends are the best elixir for the heart and soul. They are your anchor in a storm, always have your back, and protect your  tender heart. I am blessed to have such friends.

6. Cocktail- Never underestimate the power of a glass of wine at the end of a tough day in the special need trenches! 

Once I take care of myself, I am able to share some valuable lessons I have learned along the way. Brian has taught me so many! Here are a few: 

Lessons Learned As A Special Needs Mom

1. You can’t be a perfectionist and a Special needs parent simultaneously. Our kids do things in their own way and and in their own time. Expectations must always be very flexible with our kids and ourselves.

2. I may often feel isolated , but I am never alone. God is with me and so are many other special families, who understand these feelings, even though the struggles are often very different. 

3. Laughter continues to be the best medicine.

4. I must have time alone- sometimes it’s in the bathroom with the door locked!

5. While Brian’s needs are complex and life-long, he was created, like all of us, with a great purpose by God. Brian has impacted the world in a wonderful way just by being himself and is accepted by most people he encounters for who he is.

6. Crying is good therapy, whether alone or with a trusted friend. Life can be really  hard with our kids sometimes and we need a “release valve” in order to move forward. I know I certainly do! 

This concludes my lessons learned as a special needs Mom caretaker and this particular blog. If you have read this far, I applaud you! Many blessings on you, until we meet again. Xoxo 😊