Fenn was born after 36 weeks of a hard pregnancy and an intense delivery. His first APGAR reading was low and the second was even lower. Fortunately, the third reading was a little better. Coming into the world with a vacuum pump after 24 hours, with a triple neck entanglement that made it impossible for him to come into the world on his own.... it didn't start well for our little guy. But after a few days, we were ready to go home and everything seemed normal.
The first few months were a roller coaster ride for all of us. My dad was unexpectedly diagnosed with terminal liver cancer and died just 2 months after Fenn was born. The first few months there flew by.
After a while, we all noticed that Fenn was slightly scared and anxious. He tensed every muscle in his little body at every sound and every touch. He also wasn't meeting any of the normal baby milestones; reaching for toys, making a noise, rolling over. None of these were even remotely present. Swallowing was difficult, sleeping at night was a disaster, he had numerous ear infections, and at five months he was hospitalized with an RS virus infection. Things weren't really progressing as they should, but we weren't worried. We thought it was just a case of developmental delays and a case of bad luck with the infections.
When Fenn turned 8 months old, we were referred to a neurologist by our doctor. Fenn developed a strange type of seizure where he would be completely tense, unable to make contact, and sweating tremendously. A complete medical circus began. For the first year, all the medical professionals thought it was due to brain damage related to the delivery, but nothing was found to prove this theory. After numerous appointments with the neurologist, the geneticist, and our family doctor, we got the diagnosis when we were about three years old. They said, "Well, we finally found something."
Fenn has a genetic mutation on the FOXP1 gene. About 100 children worldwide and 5 in the Netherlands were diagnosed at that time. The only answer they could give us when we asked what it meant was, "Developmental delay and mental retardation, but we really don't have any answers. We just don't know much about this rare genetic disease. He just has a little "baking defect." He will probably never walk or talk. We just don't know. We wish you all the best and have fun with him."
That's it?! So now what? All your dreams and expectations of a normal life are thrown out the window. What follows are days, weeks, months of disbelief, silent grief, fear and searching the Internet. The rejection of the "normal" daycare and the abandonment of a normal school were so hard. Searching for special schools and facing all these different children with special needs was extremely difficult for us. Was this our future? Hospitals, physical therapy, speech therapy, ENT doctor, neurologist, they all became commonplace for us.
His autistic characteristics made it impossible for us to go to the hairdresser (hair and especially cut hair make Fenn sick), and the same goes for going to the dentist (the anxiety clinic is the only way to treat Fenn). You learn to deal with everything and find your own way. We adjusted our expectations.
When you expect nothing, things can only be better than what you expected. We didn't know if our son would ever walk. ...So when he takes his first steps. Get ready to celebrate! And that it took him 2 to 3 years to really get the hang of it, no problem.
We didn't know if he would ever be able to speak. As soon as he pointed to our table and said "tata" and addressed the chair as "air", he was 4 years old. Champagne.
We were able to find a special school where Fenn can just be who he is and learn at his own pace. There are kids who can learn more easily than Fenn, but there are also kids he can help. The fact that he is absolutely in the right place brings so much peace.
Fenn is always a happy boy! He begins to experience that he is different than other kids his age. He often falls down and has to get back up, people can't always understand his speech, kids won't let him play, he's not potty trained yet, he rides a bike with big training wheels on the side, he can't hold a pencil properly, he has lots of ear infections, there are lots of hospital and doctor appointments. Yet he is almost always so happy and cheerful! Everyone who meets Fenn is absolutely in love with him from the first moment. His sweet smile, his polite 'thank you's', his never-ending optimism, and the constant cuddles. He just wraps everyone around his little finger.
Fenn is almost 9 years old now and he has learned so much, however there is a big difference between him and a normal 9-year-old boy. There are many different symptoms that children with FOXP1 have. Our Fenn is so lucky to only have a mild variant of the syndrome. He does suffer from all the symptoms, but all in a mild way. We can only hope that he will continue to be so open-minded, optimistic, and cheerful. This will be a great advantage for him in life. We can only give him all our love and help, to function as independently as possible. That is all we can do, for now to give him a life that is a bit easier.
