Everybody loves Jack
Amsterdam, November 2020: Written by Yvette Holmes, mother of Jack (12)
Jack just turned 12 in October. Wow, what a journey these past years have been. When Jack was very little, only a couple of months old, we noticed a developmental delay. Jack actually did not reach any milestone during the first year and barely made adequate contact with us.
I felt very early on that Jack was autistic. But the ASS diagnosis took us several years. Jack gave so many mixed signals. He did seem to make eye contact, he did seem to be happy around people. But he did not respond in an adequate way and did not communicate at all. Very early on a child paediatrician thought his condition was probably genetic, but at that time science was not as advanced as it is now.
Jack was late in every stage of development. He started walking by himself at age 3, started talking a little bit at 5. He still does not speak appropriately for his age. We estimate that Jack mentally is around 3 years old now. He is such a happy and sweet boy. Everybody loves him!
But I have to be honest and say that these years with Jack have taken their toll on us. It is hard to explain how life with Jack is. It is like still having a demanding toddler, who never listens to anyone and is only happy when he does what he likes, who does not play, cannot wipe his buttocks, cannot be left alone, needs help with everything, does not sleep well alone, cannot express verbally what bothers him, and so on and so on.
Also, the environment has been tough on us. Because Jacks disability is hardly noticable at first sight, people have a hard time believing you, especially in the early years. Luckily we did have a few family members and friends and a lot of wonderful professionals who did believe us and helped us out when they could.
Finally, over one year ago we received the genetic diagnosis through WES (whole exome sequencing) testing. This was such a relief. Finally, our search was over. We now understand why Jack is the way he is. Already in the womb his brain developed differently. So it is actually quite clever of him how far he has come.
Love to you all,
Yvette
