We waited a long time for this… over 12 years to be exact! It started when Brian was about 2.5 years old and has gone on ever since: timed toilet training. Brian wasn’t even walking at the time! Jim or I would initially seat him on the “poddy chair”, (then eventually the toilet seat when he got bigger) after each snack and meal, with the hopes that he would go. Occasionally there was a success, and when there was, we made a huge deal of it. There was lots of positive reinforcement given , as well as bits of a favorite food that was reserved only for successful voiding or pooping. While we realized that toilet training would naturally take longer in a child with disabilities, we figured that Brian would just need extra time and repetition of this skill, just like all of the other life skills. I had guessed that Brian would master toileting on his own by age 6- for some reason, I just doubled the time that it would take an average typical child. I couldn’t have been more wrong.

We learned over time that going to the bathroom is actually a complex motor planning process that is comprised of several steps. One also has to make sure that there are no medical issues going on with their child, that they actually have the ability to control their bladder and bowel, while being able to go when appropriate. Medications or medical conditions can clearly effect these things. Kids have to be physically ready too. We realize in retrospect that Brian was not ready at all in the beginning, though I still think it was good to have him go through the motions of toileting at that time.

Children with Down syndrome and autism generally require tons of repetition with most skills before it becomes imprinted on the brain. I just didn’t think it would take almost 13 years in this instance! Behaviors, especially self-control (or not) is a also a huge piece of this puzzle, especially once our kids understand the purpose of toileting, as long as medical issues are ruled out first. For non-verbal children especially, using the bathroom or not is a means of control for them, in a world where so much is out of their control…

Brian’s initial journey was one of many accidents when he was little, then this gradually changed to the other extreme, “holding at all costs”, especially during school hours. He would still have accidents, but they were less frequent over time and NOT going, became more the norm. We were always so worried that he would damage his kidneys somehow and he was already more prone towards being constipated ( not being a big beverage guy didn’t help either), but we were reassured by physicians that nothing would be medically effected: keep offering juice and water, more fiber, more practice, more time….boy, this whole experience was like watching the grass grow!

I did have angst and struggle with Brian’s toileting for a long time, especially after I had to bring him to the ER twice because he held his urine for over 15 hours. Bloodwork, kidney ultrasound and exams were unremarkable, then Brian would FINALLY go!! Perhaps Brian understood when the attending physician mentioned something about the insertion of a catheter- he went almost immediately after that. 😳 It was the pediatric nephrologist in the end who assured me ( and reminded me) that Brian continues to be medically fine, she has seen these shenanigans many times over with other patients , keep plugging away, and, when Brian decides he is ready to use the bathroom independently, he will let us know. Of course we still didn’t know exactly when this would be, and after a long while, we were getting worn down by the suspense and stress of it all. I had to always build in Extra Bathroom Time (EBT), to make sure any opportunities weren’t missed. Add EBT to ETT (Extra Transition Time), for all daily activities, and time moves very slowly…sigh 😩

Brian decided just a few months ago that he was finally ready to start using the bathroom at school on a more regular basis. It started with once a week, to twice a week, and now he goes almost daily. He is also requesting to use the bathroom via the speech app on his iPad independently and is heading towards the bathroom on his own without a verbal reminder or a physical prompt. Why Brian decided that he is ready now, I have no idea, but I’m sure grateful he has reached this milestone! Brian still has a ways to go- he doesn’t know how to wipe himself. He still wears overnight diapers and still has accidents occasionally. Sometimes he will forget to wash his hands. Or pull up his pants. Home and school will continue to work on these things too, but it is definite progress… I am determined before I leave this earth that Brian will have the whole bathroom business mastered, because it is that important of a life skill. Brian is almost 15 years old, and while I had hoped that bathroom skills would have been achieved much sooner, I know he WILL get there, in his own time, as he has proven over and over again. Brian communicates clearly now that he is “The Bathroom Boss”, capable, and with a proven track record in this domain, with more skills to come..perhaps not on my schedule, but this is not about me anyway. 😊

Until we meet again, thanks for reading! 😊❤️

A warning to the reader: today is a dark day on the blog. Please feel free not to read any further if you prefer something more upbeat- come back instead next time when I resume with a more hopeful and humorous blog….

Today’s blog will address the physical exhaustion, as well as the emotional and mental pain that are as much a part of the special needs parenting experience, as milestones and progress are. Most of my days are comprised with extremes of both: elation and despair, along with great joy and intense sadness. The “highs are higher” and the “lows are lower” in our world and always will be. I rarely discuss the despairing details of these days because they are just too painful… I will often detach from the sorrow , redirect myself to happier places, and keep moving, because that’s what special needs parents are supposed to do and should do when the chronic challenges of their children’s disabilities threatens to destroy their joy and sanity, right? It’s the “dark side” of our daily experience that we don’t really discuss, but for the sake of our mental health and as a reality check, we must acknowledge it, warts and all. I just choose to do so in this forum, as writing helps me to process my feelings and grief better than actually speaking about it. A good cry is very cathartic too and I do it often.

A friend ( with typical children) had recently told me what an “amazing Mom” I am to Brian and that I am always so “upbeat and positive”. ” I don’t know how you do it” she said, ” and you never complain; Brian is so lucky to have you and Jim”.

Well, the truth is, very often I don’t know how I do it either. And I do complain- a lot! There are also many days when I’m quite sad and depressed. I think a lot of this has to do with the realization that Brian will always require intensive assistance with every aspect of his life, for the rest of his life. Period. I honestly never thought this would be the case. Sure, I knew that some level of support would always be necessary, but it’s the DEGREE of support that I’m referring to. This revelation hit me very recently; I guess I’m a slow learner…

The physical, mental, and emotional toll as a result of raising our kids is cumulative as time goes on. I try to find ways to manage the stress, sadness, and fears. I want to be positive and try to accept things for what they are. I continually seek ways to improve Brian’s life, while taking care of myself. Many days I ask God for endurance, peace, and just a good nights sleep! Sure, Brian has and continues to make progress. I like to share these milestones with family and friends. It’s a positive thing to do and it’s also great to have a historical record of how far he has come along. But there’s also the other side of the coin: the perpetual perseverative behaviors: the incessant vocalizations, the door banging, and the light flickering shenanigans that have gone on for years and probably always will… Or the ongoing medical concerns, the paperwork, and the communication/interaction with the legions of people who you depend on to help you help your child. I personally struggle with the physical care-taking most of all- it’s so repetitious with no end in sight…I have often lost my mind over the years with all of this, but somehow keep finding it! I hope I never lose it for good!

Like our children, we parents are resilient and ultimately carry on like we always do, for what choice do we really have? I just wish for all of our sakes that it wasn’t so hard and that we could become younger and stronger as our kids get older and bigger. I also pray for the grace and courage each day to be Brian’s Mom, especially when I don’t feel up to the task. That’s when Divine Intervention has stepped in through the wonderful people placed in Brian’s life. I just wish we didn’t have to be so dependent on so many people…

The special needs journey with our kids will always be a mixture of ups and downs, and will require a LOT of patience, perseverance, and hope. I can only take one day at a time, one foot in front of the other, in the present moment.. that’s more than enough for me…otherwise, I get too easily overwhelmed and afraid of the future. I have enough to deal with today.

May we all experience the same love, support, and compassion for ourselves that we give so freely to our children. We really can’t parent our kids for the duration without these things! Until we meet again, thanks for reading! ❤️❤️

There is nothing like getting together with old friends who have known you for years, long before you had children or got married. These folks knew you in your “former life”, when you were young, when life was less complicated, and when you had the freedom to do what you want, when you wanted to. Ahh, the joys of youth and the adventures that were shared! It’s amazing how those precious moments in time can be immediately recalled to the mind’s eye with the fondest of memories. Inevitably, seasons in life come and go and responsibilities replace most of the spontaneity of years ago. Sometimes I think about those old days, ( especially when I’m having a tough week with Brian ) and wish that I could travel again like I used to. It’s ironic to me that my world has changed over the years from traveling internationally to now traveling mostly around town! Of course it’s all of my own choosing and while I honestly wouldn’t change anything -(except of course for Brian’s Down syndrome and autism- if I had a magic wand, I would wave it and banish these disabilities away forever- who wouldn’t want their child’s life to be free of disabilities?) I still don’t want to leave my former life totally behind. It’s still very much a part of who I am today and always will be. So, how does one maintain a balance between both the old and current worlds? One way is by making a point to maintain those valuable friendships from long ago, even if it means getting together just once a year. It is definitely a rarity though – some friends are only meant to be in your life for a particular season in time. People can change for many reasons and are often shaped by permanent, life-altering experiences ( like having a special needs child). Yet, at the core there is still that person who is a unique individual with their own needs that require fulfillment. I have found this especially true of myself in recent years. Special Needs Parents have a life time of care taking ahead of them with their children – this is quite overwhelming for me personally to think about, so I really try to “redirect” myself when I start to go there. It doesn’t mean that I don’t care or it’s not constantly on my mind, but I can’t control the future ( I’ve tried on several occasions and I can tell you with absolute certainty that it doesn’t work!), and I only have this day, hour, moment… I have found renewed sanity when I focus on my own self-care, one moment at a time, with the emphasis on SELF CARE! It is an absolute and daily REQUIREMENT for a lifetime of caretaking. Ignoring our own needs for the sake of our kids or others is actually a disservice to both them and ourselves- you can’t help your children or other people if you don’t take care of yourself- period! We need to somehow negotiate ways and create opportunities for self-care/ respite to happen. It will require planning and help from others. It is not always easy to do and can be difficult to find the help, but I have also found that people in our lives are not always aware of what we need, so we have to speak up and tell them! This is exactly what I told my husband, Jim, hence, the Gal Pal Excursion to Camp Wahoooo last week with my pals from People Express Airlines. I really needed a respite with old friends and a change in my daily routine! Our often repetitious routines can be mentally and physically exhausting; I know I desperately needed to recharge my batteries. Even being on a plane by myself where I couldn’t be reached was a treat in itself, though it took me a while to decompress and relax…

I have had the privilege and joy of knowing my airline girlfriends for over 34 years! Being with these fabulous ladies brings out every playful impulse, belly laughs, and a sense of humor that is so hilarious- I am 20- something all over again! The five of us met in Arkansas last week at our friend’s lake Home ( flying in from 5 different states) and BAM!- talk about immediately connecting just like it was years ago- it is truly a very special gift that we all share. We proceeded to have the time of our lives, exploring new sights, soaking up the sun on a beautiful lake, all the while laughing so hard that my stomach muscles hurt! I am so grateful for these gal pals and the power of our friendships, as this sustains me long after we have parted ways and especially during lonely and difficult times. Loyal Gal Pals can empower us in a variety of uplifting and encouraging ways. Here is what I have learned from mine:

1. Life is short- tomorrow is not promised, so laugh loud and often with all of your heart and soul.

2. You can do anything or go anywhere when someone truly believes in you and what you are capable of.

3. Generosity of heart and a giving spirit knows absolutely no bounds and can never be outdone.

4. Listening to one another and validating concerns, as well as celebrating each other’s accomplishments with genuine support and gladness is a priceless gift.

5. Humor and hope make all of life’s moments more manageable, meaningful and joyful, especially when shared!

Whether your respite is just for a few hours or a few days, make sure to take it either alone, with friends, or whoever you want to spend that time with! You are worth it, you need it, repeat!! All of us need to find joy and laughter in the hardship of raising a child with special needs. It seems paradoxical that this is even possible, but it can be so. We need to become empowered so that we have the courage and conviction to move in the right direction. It can be very difficult to arrange for respite, sometimes we are so tired of being tired, but we must- somehow- for our mental health and sanity. Most importantly, our kids will thank us for it! Until next time, thanks for reading! 😊