My granddaughter Lexi is a special needs child with Sensory Processing Disorder (SPD) and is under the autism umbrella. We have come to understand this gradually over these past five years of her life, because the doctors, therapists, counselors, social workers all have a different diagnosis. The only constant has been the SPD which began 24 hours after she was born when she had a seizure twenty minutes after we walked in the door from the hospital. Although the neurologist and eeg test said differently, we knew something was not right, especially her feeding and sleeping habits that were unlike anything the books on newborns could explain.
Fast forward four years, melt downs after melt downs, sleepless nights, hospital stays for stomach problems because of taste, smell, feel of foods and an entire family confused about the constant crying that seems to get worse the older Lexi gets, to a day I want to forget, but a day that changed my perspective forever.
I lost my temper last summer on a drive from Chattanooga to Beaufort, SC. Lexi had been crying constantly for three hours and we stopped for lunch at the IHOP in Macon. Her mother had been sleeping, or trying to sleep. Emery Kate, the one-year-old seemed to have a sixth sense that she needed to stay quiet.
The stop for lunch was a nightmare as the place was packed and the service was poor and slow. The girls were hungry and that made Lexi more upset. I was at a loss as to how to handle things. Do I treat my daughter like a child and make her get Lexi to stop crying? Of course not. Do I assume some sort of role as disciplinarian? Not that either.
But as we left the restaurant, my daughter took the baby to the car leaving Lexi and me alone in the restaurant. She had ordered orange juice and then didn’t want it, but Emery Kate did. Her mother gave it to Emery Kate. Time to leave and Lexi wanted her juice back but EK thought it was hers. Suddenly we had two little girls screaming; hence the decision to separate them.
While helping my daughter with the baby get buckled into her car seat, the orange juice became the tip of the iceberg and for one reason or another, I threw the cup of orange juice down spilling all of it. My daughter was horrified. I felt relief and embarrassment at the same time for showing such a display of temper. I apologized.
I took Lexi back inside with me to get another orange juice and while waiting she got very anxious and was about to have another melt down and began demanding the orange juice and this in front of all the people sitting by the door waiting for a table. I overheard one woman say, “Too bad she can’t handle the child better.” I didn’t say anything. I did wonder at that moment how many times my daughter and son-in-law has heard this from strangers and my heart hurt for them.
I begin to buckle Lexi up in the car and the crying continues and then she is wailing and then EK starts crying. My daughter doesn’t seem to hear it and I realize we have at least three more hours of driving and I’m not sure I can drive with the screaming and so I do something horrible. I yell at Lexi.
I tell her that if she does not stop crying, I will not go home with her and that I will stay at the IHOP and let her mother drive them home and I will have her grandfather come get me in Macon and I’ll go back to Chattanooga. I expect her to beg me to not do this but instead she continues to cry and then my daughter gently tells me I do not have to stay the rest of the week with them in SC. Not because she is angry with me, but because she does not want my relationship with Lexi to be ruined.
Lexi did continue to cry off and on the rest of the trip, and so did I; silent tears for my shame, for my ignorance, for my daughter and son-in-law who deal with these issues day in and day out, for Lexi’s sister who loves Lexi no matter what, and for Lexi who cannot control the crying and may not know herself why she cries.
What I learned from this experience and the reason I share it is that I can be proud of my daughter and her husband for their deep abiding love for their daughter. Multiply this one day in the life of Lexi by many days and weeks and one can only imagine the life of dealing with a special needs child.
I know my daughter has forgiven me. I pray that Lexi does too.
I can honestly say that the week I stayed with Lexi and her family was a true joy. Even when she woke me up in the middle of every night and asked me to tell her a story and not just any story – but a story I make up about a little girl named Lexi.