Where is the Compassion for Families with Special Needs Children?

It is 7:30 am; the alarm sounds 1.5 hours later than other days of the week. I have to prepare for 8:30 am and 9:00 am appointments (one for each of my children). Getting them to daycare on time has been more than a struggle due to doctor appointments, interventions, and medication administrations. The victory of the morning often is safely getting them signed in to childcare. I have learned to provide notice as early as possible to their childcare providers and healthcare providers.

Our attempts to be transparent with their providers have not shielded us from criticism from either provider type. This morning as I walked my children into their childcare center, the administration decided they would remind me of the importance of providing advance notice. I had emailed two weeks earlier about recurring appointments on our schedule to avoid this type of interaction. We have had to withdraw both children from previous healthcare teams and/or childcare providers due to rigid policies. So this is my attempt to write a letter to those who will never understand my plight:

To Whom it May Concern:

Today you reviewed your patient/childcare schedule. It included my child/children, one of many others that you will tend to. While some parents experience their child tantrumming for 10 minutes, my children tantrum for hours (at times) and simultaneously. Our home schedule and otherwise (vacation) are structured around avoiding melt-downs. If we can avoid a morning melt-down, we stand a chance at being "productive" according to the world's standards. We can make it to appointments, feed each child, and still make it to work on time. If we can avoid illness, we don't have to debate who will use leave or who lost more sleep the previous night. As a mother of a child with specials needs, you have a different level of compassion for other families and children. When I see a special needs child tantrumming, my heart breaks for both the mother and the child. The adult and child involved cannot control how long the melt-down will last or how humbling this experience is. I sense the helplessness and powerlessness of the other parent. As a parent, I would give my life if it meant my child wouldn't have these struggles daily. We have missed appointments, life events, friendships, and job promotions due to our situation. While this minor inconvenience may upset your schedule, you will never know our daily struggle, heartbreak, strength, or determination because it is impossible to when it is not your lived experience.

The next time a family is late and provides notice, spare our families the lectures about punctuality or any shaming. We deal with judgment all too often from outside and inside our situations. The way our families are treated by those who should "know" is appalling. Families of children with needs need compassion, not lectures. We deal with enough! Last week I spent 8 hours coordinating appointments, medications, insurance coverage, medication retrieval, and documentation release from 3 pm-11 pm after working a full day with one child suffering from an Asthma flare and toothache simultaneously.

I will digress to say that while our life is tough and our schedule is unforgiving, my children are a blessing. I wouldn't trade them for the world. Having children with needs has made me appreciate all needs. To people providing support to families of children with special needs, the next time you see them struggling with being punctual, do the following:

1) Offer compassion

2) Be flexible when possible

3) Accept that they have no control over their child's conduct

4) Understand that they are stressed and have to live past this moment, assist them in making that transition by being positive

Author: Alita-Geri Carter, MSN, RN, CPNP-PC