What do I do if there is something wrong with my child?

Henry

By Johanni Meiring

Going through the possibility of diagnosis of any long-term condition for your children is unreal and difficult to process. Johanni and Gideon Meiring had to experience this reality, like many other families, in 2009. Johanni shares their experience during the time of diagnosis of their daughter (then 21 months old).

I can remember this particular afternoon so clearly. It was over a weekend and we had a small, late afternoon gathering at my sister-in-law’s house. Our youngest son was almost three months old at the time and we were still in the “showing off our baby” season for those who hadn’t seen him yet.

It was a difficult afternoon for my daughter (then 21 months old). Even though we weren’t there long, she just couldn’t settle down. She couldn’t really talk or walk on her own at this age either.

The experience was not strange for me and Gideon to look after her most of the time. We got used to the fact that she didn’t want to sit with any other people but us, and that most of the time she had trouble settling down. And, of course, that she is just a little late with her milestones…

It was clear that family members were beginning to notice that her behavior was not improving. We just had so much going on that the only option was survival. We just tried to get through the days, but believed that she would get better.

After all, who would think that there is something wrong with your child, if she is a difficult toddler who just got a baby brother?

At one stage during a visit, my father-in-law’s wife, and dear friend to all of us, specifically asked how our daughter was doing. Then, with all the courage she could muster, she said that they had been worried about her for a while. She also asked if we would consider taking her for an evaluation with a therapist.

The question took my breath away.

Even though I was very shocked by what this implied, I remember thinking at the same time, “Maybe all this is not just our fault. This is the chaotic sense of reality.” We had been very tired for a very long time and didn’t really fight the idea.

We started calling around and finding out where to get our daughter evaluated. It is such a common phrase for me now, but at that stage just the word “evaluate” evoked so many emotions inside me: “Is there something wrong? What could be wrong? What will they say? She is just a baby. Did I do something wrong? What do I do if something goes wrong?”

Although I had all these thoughts, I never had any idea what the outcome would be. All I could think was: “I have a beautiful little girl, she is just unhappy. She’s just unhappy. It would be wonderful if we could find a solution to her unhappiness.”

We made her first evaluation appointments with speech, occupational and physical therapists. All the evaluations were done very thoroughly and sensitively. I didn’t understand most of the feedback, but I realize that what they are saying is not good. I realized that there was something wrong with our daughter’s development. The initial feeling after receiving this news was numb and shocking, but the words in my mind were: “Run with the torch, save your child. Find out what’s wrong and fix it.”

After this appointment, it unfortunately took a few more traumatic doctor’s appointments to get our daughter’s final diagnosis.

I will never forget that day right after we received the diagnosis. My husband and I went to a restaurant near the doctor’s rooms. We sat together but didn’t really know what to say. It was like someone punched you in the gut. She sat on one of the playground’s carts that just drove around. This made her very happy.

I will not forget how that same afternoon, when a friend dropped in to see if we were okay, I cried helplessly over the diagnosis. It felt like a visit you pay to people when someone has died. The hardest part was trying to explain what the doctor said. Trying to relay the typical prognosis for autistic children made me feel powerless and lost.

Today I tell this story almost 14 years later. I have a beautiful teenage daughter who lives life in her own way and teaches us a great deal. The past years have definitely been challenging. Even though I can still feel the pain of the diagnosis like it was yesterday, I wouldn’t trade or change a day with her.

Support group

Parents of children with special needs often feel alone and isolated in their parenting struggles. That is why Solidarity Helping Hand in collaboration with Parent Reality is offering an enrichment morning on 9 September 2023 to bring together parents of children with special needs, and create the opportunity where a support group can be established for them.

The topics that will be discussed are:

  • Relationships in a special family.
  • Information about disability tax.
  • Self-care in a family with special needs.
  • Discover your resources and support.

For more information and bookings, send an email to sonica@helpendehand.co.za.

  • Johanni Meiring is a life coach, special needs parent and co-founder of Parent Reality.