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! 😊