Parents:
Stuart and Juliette Attwell
Profession:
Own Business and Digital Brand Manager
Age of parents:
37
Child’s name:
Jonathan
Age: 7 years
Is this your only child? No, he has an amazing younger brother, Spencer who is 5.
Diagnosis of child: Jonathan has USP9X c28 duplication syndrome. He is only one of 4 diagnosed children in the world. It has taken 6 years to get this diagnosis. No one knew what was causing all of Jonathan’s problems and eventually in 2016 the technology in genetics had evolved enough to be able to test and detect duplications or deletions at a genetic level. This “syndrome” was the cause of migrational cell disorder whilst Jonathan was developing in the womb. Migrational cell disorder basically means that oxygen cells in the brain don’t migrate to where they are supposed to in the brain, thus starving that area of the brain of oxygen and damaging it. This damage has caused intellectual disability, speech impairment, low coordination, low muscle tone, epilepsy and overall developmental difficulties.
What are the biggest challenges facing your child on a daily basis?
Jonathan is an incredibly determined and brave boy. In fact doctors didn’t think he would walk, but he did and he got there through sheer will and that is like everything in his life. He sees other children do things that he’s desperate to do and will try and try and try again until he can do it. He is physically limited but with ongoing physiotherapy he has been able to reach milestones we never thought he would. Everything in daily life is a challenge for Jonathan from using the toilet to getting dressed to learning, but he certainly perseveres. I do think he gets lonely and perhaps feels isolated but he doesn’t have the verbal or cognitive skills to express this so I worry a lot about these feelings and how they affect him.
What are the happiest moments you have with your child on a daily basis?
Jonathan has the absolute best sense of humour. And he LOVES making people laugh. He will do things (even if they’re naughty) to watch people laugh. You may think it’s strange given his limited verbal ability but he gets his message across without words, using actions, expressions and cheekiness. This makes our day. I have never met a teacher, doctor or care giver that hasn’t completely fallen in love with him. He has an unbelievable light that shines from his soul.
Are you a single parent or married? Married.
Has your special needs child had an effect on your marriage?
Absolutely, both good and bad though. Trying to figure out what is wrong with your child for 6 years is incredibly stressful. To add to this Jonathan was admitted to hospital a few times a year, often for pneumonia but also for testing and investigative procedures like MRI’s and EEG’s so we had a lot of ups and downs when he was little. Another big challenge that we have tried everything under the sun to solve, is that Jonathan doesn’t sleep through the night. On a good night we are up with him two or three times and on a bad night about every half an hour. He has never slept through the night and so we are often tired, forgetful and grumpy! But having said this I am very lucky to be married to a man that is completely devoted to his sons and family. If anything my love and admiration for him has grown more over the last 7 years and made me realise how strong we can be and all we can get through together. Our motto has always been that we do things as a team and this seems to work well for us. We try never to blame or let the one do more than the other, and we always advocate and encourage the wellbeing of the other, if this means alone time or a morning at the spa, whatever it is. It definitely is not perfect and we have good days and bad days like anyone but we try to see the funny side of things. I think as long as you have respect for each-others headspace and wellbeing it goes a long way to get through the dark days.
What has your child taught you about yourself, both positively and negatively?
Wow, where do I start. I have fundamentally changed as a person because of Jonathan. I completely re-evaluated my life and truly started seeing what is important. (This took me a few years though, I think Jonathan was about 4). I still work and I love my job but it’s reduced hours and in a respectful and caring environment. Reduced hours gives me the freedom to take Jonathan where he needs to be without me stressing about it, but I still have my own sense of worth and purpose by having a career. My husband also started his own business so that we both have the flexibility to be available for our children, which we are very lucky to be able to do. Financially we have had to do a lot of planning, school fees for Jonathan alone are over R90k per year. Then there are weekly therapies, doctors and equipment. We have had to dig deep and prioritise. I am stronger in my convictions of what I want for our lives – and I won’t compromise. My eyes have been opened to the special needs world and I have met the most unbelievable people and children because of it which I am so grateful for!
Are your family and friends supportive?
I can’t begin to explain how amazing our family and friends are. They are our rock and life-line. There is nothing better than spending time hanging out with friends who truly understand us and Jonathan and our challenges. We have a big circle of friends that all always step in and step up when we need them and we are so grateful for that. We have a granny that lives around the corner and is very involved in our boys lives and helps us whenever we need, without a single hesitation and although my parents live in the Cape and we are in JHB, we are very close and they offer us unwavering support.
Do you take time out, if so what do you do to relax?
Yes – but only in the last 3 years or so have we realised how important this is. We’ll go away for the weekend without kids just so we can laze by the pool and read and relax. It’s therapy for the soul! Short term though I try get to yoga at least twice a week.
What has made the biggest difference to your child’s quality of life?
Therapy and school! Jonathan started physio at 4 months old and has been going weekly since then. Without this I truly believe he would be immobile. OT and Speech therapy also play a massive role and help him to navigate his way in this world. School is on par with this though. We are very lucky to have been able to send him to the Talk Shop until he was 6 and he is now at LUCCA. Both these schools are phenomenal and completely entrenched in growing Jonathan to his full potential. He is challenged, stimulated, socialised and absolutely loves school and we find the support and community a massive help too. We had a brief stint at a school that was completely wrong for Jonathan and I cried the whole week knowing it wasn’t the right place for him and I was 100% right. I am so happy we moved him!
What is your dream for your child?
I dream just like any other parent. I would love him to find love and a partner that makes him happy. I want him to find purpose and a sense of meaning and independence, even if that independence is sheltered. I want him to have friends and a feeling of being an important part of something – whatever that is. I want him to be fulfilled and understood and happy.
