If you have ever used those words at your child’s pediatric well-check appointment, you have unknowingly joined a club of parents that truly understands your feelings.
Sleepless nights are often filled with worry, difficult days trying to meet the special needs of your child are common. Your physical, body fatigue may become overwhelming. Your relationships with your family, other children, and spouse have become strained. Attempts to plan for the future financially or just to meet daily needs may have failed. Having a child with special needs in your family changes every aspect of your life.
Take a moment to read this essay entitled “Welcome to Holland” by Emily Perl Kingsley. This essay continues to profoundly impact many families today.
Acceptance of this change is difficult for many and often comes in different stages. The journey of families with children that have special needs is often more successful with support from other families that have similar experience, a faith community and family support. Contacting the Early Intervention Program of Pennsylvania is also an important step in overcoming these obstacles. Call the CONNECT Helpline at 1-800-692-7288 to obtain more information about the Early Intervention program. This website has been designed to help connect more parents to the services they need. 
On a personal note, my family and I have been on the “developmental delay” journey with our youngest child for the last three years. There have been many rainbow days despite the gloomy, rainy days. Looking into my child’s eyes and knowing she loves me, even if she cannot say it, is my motivation to continue being the best parent I can be. I must be her voice.
I clearly remember an incident at the grocery store that remains vivid in my memory as a pivotal point in my journey. I had a huge shopping cart and was at my wits end, but decided I needed to use the bathroom with my toddler. On the way into the bathroom, my purse spilled and my toddler fell. A woman watching us while washing her hands, smiled and said “You are a great mom.” Dumbfounded, I said “Thanks.” I asked “Why did you say that?” she responded, “My little brother has a disability and my mother struggled because she never felt like she was a good mom.” “I just felt like you should know that you are a good mom.” I looked at her, there was no pitiful, condescending smile. I was expecting her to make a negative comment about my child’s behavior and was bracing myself for it. I was feeling like a failure. I never expected her to understand my feelings and truly empathize with me. This moment, changed my perspective.
This story is important to me for two reasons. The first reason is because it gives a great example for others of what to say to a struggling parent in a difficult moment. Regardless of whether or not the child has a disability, the situation was stressful, and it was a perfectly timed complement. The second reason is that because of her own emotion and experience, she was able to validate my feelings. We connected in that moment, and it was about so much more than the words she used.
When I look back at my own experience with others that have disabilities prior to my having a disabled child of my own, I realize I was afraid. I was afraid of saying something that would be offensive, when in reality I was trying to help. I was afraid of staring, or asking a question that would be rude. My solution was avoidance. My “grocery store” example was a good example of how others can positively impact a person’s outlook with a simple complement. I’m now able to understand how other’s avoidance of my family in community settings is no fault of their own. It is simply lack of experience.
My biggest support system lies in other mothers with children that have special needs. I can call a special mom and within the first two minutes of the phone call we can exchange our struggles of the day and be completely understood by each other without judgment. Often as mothers, we put our own needs below everyone else’s. Feeling validated and sharing experiences is truly comforting and necessary. I’m continually working on cultivating relationships with other parents that identify and relate to my struggle with acceptance.
Our families’ experience with Early Intervention has been wonderful. Our child received many services for two years without cost to us and has successfully transitioned into the preschool program at the Capital Area Intermediate Unit. The amount of progress our child has made during those two years, is astounding! In addition to Early Intervention, I also became involved with special events at United Cerebral Palsy, Hands and Voices and many other community programs. This involvement was my key to making connections to other families. I feel truly lucky to live in Pennsylvania because of all of the programs offered in so many different avenues.
Although it is easier to hide inside your house at times, getting out and being involved in the community can be very healing. You truly never know what can happen. Being in a certain place at a certain time, could bring you closer to the person who just may have the key to helping you. It may even be as simple as a quick complement.
