One of my ongoing New Year resolutions is to have more “flexible expectations” as far as Brian’s life is concerned. This includes every facet of his life, from soup to nuts. Difficult? Very much so! Impossible? Well, not so much now compared to the early years, when everything was so new, intense, and overwhelming. Don’t get me wrong- raising my son can still be very overwhelming, but time and experience have brought new perspectives and coping strategies. I continue to learn right along with Brian and I’m sure I always will, for better or for worse.
At the end of the day, I just want to see Brian happy and healthy. It sounds simple and overplayed, as we hear these 2 wishes so often, especially at the beginning of a new year. However, the reality is, without these essentials, our children’s lives (as well as our own) will be a huge struggle on so many levels. Therefore, we strive to provide our kids with every medical, educational, and social opportunity available to ensure that these wishes will be realized. Years ago, our focus was primarily on the medical. Sustaining my high-risk pregnancy and getting Brian safely out of my womb were the 2 primary goals for 8 months. Once he arrived, then it was open heart surgery, followed by an orchiopexy, ear tubes, and eye surgery. It took quite a while for the medical issues to be stabilized before we could follow more of a “medical routine”. Ultimately, we achieved the goal of getting Brian to a place of good health. Down syndrome presents it’s own ongoing medical challenges, but so far, they have been managed well by the stellar physicians placed in our path. Brian also eats well. A checkmark could be placed next to the “healthy box”- at least for now, and hopefully for a long time to come.
Just like Maslow’s Hierarchy, once the physical needs have been met, we need to feel safe, then loved in our environments, followed by a sense of belonging. Our kids are no different in their need for all of the aforementioned, perhaps just more opportunities. Brian certainly benefits from lots of opportunities/repetition for every one of his life experiences in order to understand them. Whether it’s a new food texture, or new people in a new environment, Brian will always require several trials of whatever it is. It’s a predictable routine that my husband and I have come to know. While we try to challenge Brian in order to see exactly how far he will go, we also respect his boundaries. Life is long and Rome was definitely not built in a day, in fact, it is taking years with no end in sight!
Special education has been the “main dish” of Brian’s “meal” over the past 12+ years. There has been a lot to digest and learn, with many struggles along the way. Classroom activities, therapy sessions, behavioral plans, vocational education, and IEP meetings, etc. So much time and effort are being invested in Brian to help him be his best person. I sometimes get lost in the details that really don’t matter in the long term and forget that happy, healthy, and personal fulfillment will mean much more to Brian than mastery of IEP goals.
Ultimately, there comes a point when I have to prioritize what I think is important for Brian to experience and know. This process is ongoing and has sometimes been very painful. It has required a shift in attitude and mindset, a letting go of old dreams, and the creation of new ones. Sometimes the “wish for what could have been” comes to visit at the most unexpected times. Holidays, life’s milestones, and other events can sometimes still be emotional triggers to remind me that Brian will never go to college, marry, or live independently. Daily routines also point out that he will always need help with everything for the rest of his life. Years ago when Brian was little, especially after his additional autism diagnosis, I concluded that we were doomed by disabilities that were larger than our lives. The grief and profound sadness of our reality made me a hot, inconsolable mess for quite a long time. Acceptance was initially an unwanted guest, but thankfully became our good friend in it’s own time. Eventually, there was a gradual shift from the hopeless to the hopeful. I would have never believed it was even remotely possible, especially if you asked me when Brian was very little. I remember reading one special needs book about Down syndrome back in those early days when a Mom said how much of a blessing her son was and that she wouldn’t change anything about him. I thought that was insane when I read it. How are the challenges and hardships imposed by a disability exactly a blessing? I eventually came to understand that it’s not the hardships themselves, but rather, what they produce, that are the blessings. Things such as: hope, perseverance, love, support, compassion, and appreciation. Of course our kids also exhaust us, drive us crazy, and always will. Brian certainly does these things too, but he has also taught me over the years how to look at life through his eyes. I haven’t always accepted his invitation, but when I have, I am the better for it and so is he.
I’ve also concluded that productivity/fulfillment is just as important as health and happiness. Brian may be sated and quite happy, but it’s also paramount that he is doing activities that are both fun and productive. Keeping busy is key to productivity and purpose- it wards off depression, and keeps us moving/engaged with others. The alternative of prolonged inactivity is like the kiss of death; this is very different from periods of rest or low-‘keyed activities, which are also essential for our kids. Any extreme on either end of the activity spectrum is certainly not healthy.
School has provided ample opportunities for productive learning that can result in job skill acquisition later on. Brian is learning various jobs and self help skills. He is out in the community quite frequently between home and school. Brian also has a home therapist after school during the week to assist with leisure and vocational skills. Plus the weekend recreational activities. It is certainly a busy life- is Brian always fulfilled by it? I’m not always sure. He absolutely prefers some activities versus others, just like the rest of us. He is learning to accept changes and will at least try new things, albeit briefly in the beginning, with a gradual increase in effort as time goes on.
At the end of the day, it is my hope and prayer that Brian will master one skill that could be used for some type of “work”. What exactly this “work” will be remains to be seen. It is a huge concern for many special families, as the rate of unemployment for special need graduates is quite high. Some families are creating their own work opportunities for their special young adults. Perhaps we will also be inspired to do the same. Or it may be that Brian will be happiest doing recreational activities. It’s hard to predict exactly what will ultimately happen, as things constantly change. We are open to any inspiration that would lead us in the right direction. In the meantime, we pray a lot, then follow Brian’s lead.
As another new year begins, we will once again try to keep healthy, choose happiness, and actively seek fulfillment in 2019 with an open mind and heart. I believe Brian would wholeheartedly agree with this plan and wouldn’t want it any other other way.
Many blessings on you and your family in 2019! May you be happy, healthy, and fulfilled by what matters most…
Until we meet again, thanks for reading!