Levi was born in December 2003 in Belfast, in what the medical profession calls an uneventful birth. It was uneventful for them, but we were over the moon. He was 6lb at birth and everything seemed to be normal. He was a very quiet baby and rarely cried. He fed well but did not sleep very well, so we assumed he wanted to eat more. He was at the lower end of the growth percentile chart at birth but soon grew to be at the upper end.
As a baby, we didn’t think there was anything wrong with Levi. He had a quiet baby, he was affectionate, and would smile and giggle when we played with him so we thought all was normal. We did notice his clenched fists but never though anything of it since it was not a concern to health care workers during visits and post-natal checks. As a toddler Levi was slow to walker. He never took a step until he was 18 months old when he was referred for glasses. After he received glasses, there was no stopping him.
Looking back now, we should have been more concerned about his speech as he only used 2-3 words, but again you take advice from professionals. When Levi was around two, he had started to receive speech and language therapy. When Levi was around 2 years old, we were stationed in Germany. The doctor referred to the pediatrics department to assess his global development and his level of speech.
If you are just starting on this journey here is a snapshot of some of the kind of medical reports you may receive. This was part of Levi’s 2.5 years of life:
“He is very poor with coordination and with his cutlery, he can turn the pages of a book, and he does not point. He has been attending play school, where he does not isolate himself, however he does not take part in activities. It seems he only has 2-3 words but he can hear normally.”
“On examination, weight 15Kg, head circumference 50.2cm. He has minimal dysmorphic features and a singular palmar crease with the fingers being short and stubby. He also has contracture of the 3rd and 4th fingers bilaterally.”
“It is possible that he may have a dysmorphic syndrome, probably not chromosomal. We will pursue with chromosome analysis.”
Levi was 2.5 years old at the start of our diagnosis journey. When you first see a report like this, you will get upset and shed a few tears, but you will move on. You will get answers (eventually) and hopefully you will receive the support you need.
We were very lucky to be serving abroad when first tried to get Levi diagnosed. We flew to London to see a genetic specialist from Kings College and again to Great Ormond Street to see a consultant plastic surgeon about Levi’s hands. Levi was initially thought to have Saethre-Chotzen Syndrome, but after testing, this was ruled out. At the time, genetic testing could only do so much as it was so expensive, and they could only test for known abnormalities. No one had heard of FOXP1.
At the end of all the assessments, a report was produced, and we attended a meeting with all the specialists involved. We were told that Levi had been diagnosed with an unknown genetic disorder, global developmental delay and moderate to severe on the autistic spectrum. He was 4 years and 1 month old. I can still remember the room. My wife and I sat on chairs in the middle of the room and the specialists were in a semicircle in front of us. At some point during the meeting, my wife ran out of the room crying closely followed by me. We were devastated.
The next few years rolled on with occasional little victories, like Levi brushing his own teeth, getting himself dressed with assistance, feeding himself, and lots of other things that most kids just typically do. Simple things that as a parent, you are so proud of but no one else could ever relate to or understand.
We worked on social interaction with Levi starting at an early age. Levi was still seeing specialist and was in a special needs school where he was receiving speech and language therapy, along with occupational therapy. At the age of around 8 or 9, he was still not talking. We also received confirmation that nothing had been found during the DDD study, however they were doing more test as genetic sampling was getting more in depth and cheaper. It was also around this time that we had a role change in the house. Lesely was finding it harder to cope with Levi as he was getting bigger and harder to get around. Levi was getting to physically big for Lesely, so I took over as Levi’s main caregiver, and took a part time job while Lesely went back to work full time.
Speech: At around eight or nine years old, Levi’s speech was still very limited with very few words. He was still receiving 1-1, as well as group speech and language therapy at school however he was making slow progress. We had always shied away from Makaton and sign language, so we started listening and singing more music and nursery rhymes. We listened and sang songs in the car, on his iPad, music centers, and on TV. Basically anywhere where we could, we would sing. I don’t know if it was the music or Levi’s mind was just starting to catch up but he did start to sing nursery rhymes, like “Twinkle, Twinkle, Little Star.” Although he is still very far behind developmentally, he talks, he can express his needs and wanted, he will ask to do things, and he will argue with you when we are trying to make him do things he doesn’t want to do.
Some of the learning aids we found very helpful:
Mister Tumble: In the Uk, there is a program produced by Justin Fletcher called Something Special. It is a special needs TV show (available online or IPlayer) in which the actor does a show with different characters, all in fancy dresses using Makaton> Levi was obsessed with this, and began not only copying sentences from the show, but in the right context.
Amazon Echo: When he first started using it, it would not play a thing. We lost count of the amount of times we have said to Levi “you have to say it properly.” We now laugh at his drawn-out pronunciation of “Alexa Play” such and such.
Toileting: At 9 years old, Levi was still wearing pull ups. Once he began talking and understanding, we went all out to toilet train him. We started at the beginning of summer, by starting him in pull ups. At first, every 15 minutes we took him to the toilet whether he needed to go or not. We kept a diary (timings, good days, bad days etc.) and over the course of the first month kept increasing the time between toilet trips. Eventually, we were up to around 2 hours and then one day, he got off his trike and went into the house on his own and went to the toilet (another emotional moment). We carried on all through the summer. Personally, I feel that you have to realize your own child’s level of understanding before it really clicks. We had tried and failed so many times with toilet training. We felt like failures and bad parents, but over time I’ve realized if they are not ready, they are not ready. Don’t beat yourselves up.
Levi was making a great deal of progress. His speech and understanding were getting better and better. He began attending an after school club for kids with special needs. We began looking into taking a memorable family holiday, which we had not done in the past due to Levi’s disability. In 2016 we bit the bullet and booked a flight to America. We travelled along the California coast to San Francisco, stopping at various places along the way before heading through Yosemite national park, Death Valley, and on to Vegas. Levi loved it and we spend many hours watching videos of American road trips online. We have been back 3 times since initially visiting. Levi loves it, and we spend a lot of time with Levi discussing where we are going next.
We finally received a called from the genetic specialist telling us that we had the results from our last batch of tests. We were so happy to finally have a diagnosis.
I’d like to finish with a few bits of advice. Do not worry about the future and concentrate on the now. We have spent so many sleepless nights worrying about things that are now resolved. Work at your child’s pace and ignore what people think. Do not worry about what your child will achieve. Levi didn’t talk until he was around nine years old, and now he comes down stairs to tells us it’s time for bed. Lastly, Levi has two years left at school and although I have a plan about what to do, I cannot start to put it in place as he surprises on a daily basis with how much he can achieve.