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!

Continue reading →