Great Expectations: Down Syndrome Edition

Blake with his sister Kaleigh

The times in my life I have had the greatest expectations for a person, and event or anticipated an outcome of a situation I have found myself the most disappointed. I have done it over and over again too, somehow expecting a different result. Wait, that's the definition of insanity, isn't it? The most 'insane' concept to me is expectations but I continue to get sucked into this vortex.

Life is a journey of work. Work from home, workout, go to work, work on your craft, work on yourself. Removing expectations from people is something about myself I am currently working on. It is a tough one as you have to retrain yourself in a sense. My son Blake has Down Syndrome (In case you missed the other dozens of posts about it). His presence in my life has been a crash course on a daily basis about removing expectations and replacing it with acceptance.

Let's think specifically about the expectations we have projected onto our children. We expect them to be the top of their class, their first words to come early, to be the smartest, fastest, happiest children. We can't help but compare them to others. Don't bother lying to yourself we ALL do and have done it. I am presented weekly with charts, statistics and developmental averages for which Blake is to be measured against. How can I not have expectations?  It seems only natural right? YES, if I want to be let down and set myself up for disappointment. I work on releasing my expectations of him so I can let him go at his own pace and do what he wants, when he wants from a developmental perspective. This notion of 'letting go' and letting him be who he is on his own schedule has been a tough one for me. 

Some of us judge our parenting skills on the development of skills in our children and how fast they reach these milestones which is the ultimate fallacy. Early intervention and extra practice will enhance a skill but honestly each individual child, when THEY are ready will complete a task, master a skill or say a new word. I used to judge myself  because my children's progress seemed to be the only measure of all the hard work, time, effort and care I poured into them each and every day. I don't do this anymore. Instead I honestly ask myself if I gave my best at the end of each day and move on.

How does my tale apply to every one's life? You don't have to have a child with Down Syndrome or any children for this to resonate in your life. Removing your expectations from others will help you minimize stress, allow you to be in the moment and actually ENJOY the event or time you are spending with someone. In my case, I enjoy my son's milestone(s) and his progress, no matter what the pace. I cannot project my schedule of how I want or wish things to be, but remove these expectations and learn to accept the way things are. The ultimate parental freedom.

Blake's extra chromosome has forced me to slow down my life and look at the world with new eyes. The only great expectations I have are on myself, to enjoy each and every moment.

The Participation Trap

My second child Blake has now reached the place just prior to pre-school, known here as the time for Parent Participation or to me as the Participation Trap.

I went yesterday with reservations as I had a previously failed attempt to fully embrace the program when my daughter was small (prior to two) as the children all played independently (with no benefit that I could see) as the granola eating, over indulging mothers looked on and judged each others parenting skills or the lack thereof. After a public disagreement with one of their 'expert' guests about visual and auditory stimulation and a trip to the dairy farm that made me weep for days after I called it quits.

This time I signed up in another location hoping that geography and passed time would make a difference. One of my dearest friends reminded me 'it was time' so we each put our children into the program. Her daughter who is 5 months younger than Blake is much more advanced which I attributed much of to gender, as girls tend to develop faster than boys in my experience. When they play one-on-one I never really notice or think about his delays.

As a mother with a child who has developmental differences all social situations (I am learning) with his peers is difficult for ME. I do not notice the delays or deficits in our day-to-day lives as he goes about his business, plays and learns in his own environment and at his own pace. Yesterday I had a reality check. Alongside his peers his delays were very pronounced and heart wrenching to me. I know we are not supposed to compare our children with others but we do ... we ALL DO! 

I thought it best to speak with the teacher and inform her that Blake has Down Syndrome. Her immediate response, which I feel well intentioned, was to give me an option to switch him into the 1-2 year old class. I immediately declined and vowed to myself to gut this out no matter how difficult I perceived it to be. I had committed to be there and instantly felt trapped. I watched the clock tick by, each moment feeling like an eternity. Blake played and ran about the room with pure joy, discovering everything he could, at least he was enjoying himself I thought. It made no sense to me to take him back a year in the program. It was counter intuitive that he would learn to speak or expand his expressive language skills being surrounded by those who still babble. I feel he needs to be with his peers and learn from them. I panicked as the foreshadowing of his academic life flashed before my eyes. Is this where my advocacy role for my son and his education begins? The thought in that moment was exhausting.

After "circle time" where I knew only two songs, yard time where Blake was pushed around, out run for toys, out climbed and out talked by the all other children, and the sign up board for adult mommy snack I decided to make my escape 10 minutes early. The walls had closed in, the staring became unbearable so we quietly slipped out the door to race home for Blake's regularly scheduled occupational therapy session manic Monday style.

I am not the type of mother that enjoys socially contrived, phony atmospheres with women whom I have nothing in common with other than a vagina. I don't give a shit about circle time songs or snack for the mom's. It's just not my thing I guess. As mothers we must sacrifice our personal enjoyment for the sake and benefit of our children, right?

The REASON I joined the program is for my son to be exposed to his peers, those of the same age. I want him to be able to play, learn and grow. I also want him to be exposed to others who have other skill sets than he so he is able to acquire them or at least gain exposure to them.

After much reflection yesterday I realized that I had set the trap for myself. With my past experience and my personal adult annoyance with situations like this clouding my judgement I let all of the negative aspects get to me. I usually always look for the silver lining but in a room full of 'normal' or 'un-delayed' children, which is the parental equivalent of the oxygen being sucked out of the space, it overwhelmed me.

What will I do? 

I will free myself from the trap by doing the following:

1) Sticking with the program of his peers (two year old's) and seeing through my commitment.

2) Choosing 3 positive things from each session to reflect on.

3) Being cognizant that this is BLAKE'S time.

4) Realize that Blake will take what he needs from this experience at HIS own pace.

5) Educate every single person in that room about Down Syndrome and how proud I am of my son.

Have you fallen into a Participation Trap with a program? school? or social situation with your child?

Share your experiences below.