Wednesday, January 26, 2011

Siblings of special needs children have special needs, too.

When my wife and I found out we were going to have a second child with disabilities, we began a process of grief and loss for our middle child (2 yrs), who would now have another sibling not much different than her older sister.

While the process of grief is a tricky one, it is a process. Eventually, a time came when we realized that we’d have to find ways to separate our two-year old from the constant stresses of care giving for her two special needs sisters.

We started dreaming big dreams about the ideal situation, which included a house with separate wings, a care-giving wing and a family wing. We even dreamed about giving the two differently abled children their own house, complete with ramps, caregiver quarters and all the accessible necessities to make life easier, but separate from core family time.

At first, these dreams went against my every fiber, my every being of what I knew and understood a family to be - a core group of people supporting, loving, sharing, creating memories, etc. But as the reality of our situation with the two children with cerebral palsy (one severe, the other moderate) became a day-in, day-out operation, we began to need care givers to support their medical needs, which changed the entire family dynamic.

It was particularly evident, as our middle child required more one-on-one time with both of us. We started first, spending small amounts of time with her, taking her to story time at the library or taking her for a special lunch date, in between the many medical appointments we had with the other girls. These small glimpses into her world forever changed how I would view her future needs of mom and dad time.

Even though we have ‘socialized’ her at daycare two to three days per week, it became clear that she would need isolated time with mom and dad. Not only that, but she would need special time with her grandparents, aunts, uncles, etc. but not in the drop-her-off-so-we-can-get-time-to-ourselves-kind-of-way.

She would need mom and dad with her in our non-care-giving capacities so that we could give her the special attention that she needed - after all, she is at such a critical development stage.

The point is that it’s awful darn hard for us parents of differently abled children to make special time for those children who are able, who have many requirements that are special and who need our undivided attention at critical junctures -  as development and learning never stops.

It gives you all kinds of emotions, ranging from guilt to joy and everything in between, so making the decision to give a child their own special attention becomes difficult or never happens.

Having just returned from a short stint - a long weekend at Grandma’s house - with my wife, the family dog and with complete focus on my two-year old daughter, I can say with complete honesty that it will happen again, over and over, for as long as she will travel with us.

Sure, we all suffered from post-mini-vacation bliss, not to mention a very tough transition back to reality, but it was the best decision we’ve made, and the hope is that the benefits for her will far outweigh  any of those emotions that got in the way in the first place.

Tim Gort is a professional writer who writes about his personal challenges and triumphs of being a special needs father at the family’s bog (



  1. Beautifully written. The special time that each child needs takes a more prominent position when the children are so different. My son is more caring, empathetic and probably more of a leader because he is so involved with his sister; yet he needs time to be a 5 year old that doesn't have to be aware of her needs.

  2. My sister has special needs. I couldn't imagine my life with a sister different than the one I had. She truely shapped my life, from my career to my everyday life choices.

  3. I actually think that every person has Special Needs of some kind.
    With that said - I really appreciate your writing here. We've gone through similar struggles to balance the needs of both our our kids, making sure that our younger son doesn't miss out on things while also not wanting to leave our older son out at all.
    The hardest day for me was when my 4 year old asked if he could schedule a meeting with his Dad and I. We were so wrapped up in our older son's extensive needs that he figured the only way to get time with us was a meeting. Definite wake up call for us.
    Thanks for sharing.