Parenting A Child With Epilepsy
Parenting is a difficult job – you’re never going to get it perfect. I have become accustom to that feeling. I have two children: a boy who’s 6 and a girl who’s 4. My son was diagnosed with epilepsy at 3 months old. Believe it or not that wasn’t the worst news we had got in the first few months of his life. If anything, we were expecting it! My son had a stroke at birth which caused his epilepsy and was incredibly poorly for the first few months and continues to have periods of time where he is unwell. He has right sided hemiplegia, which means he has a weakness down the right side of his body. He is an incredibly resilient child. I couldn’t be prouder, and although I wouldn’t change him for the world, because of his medical issues we do have to change the way we live our lives. A lot of the time he makes our lives richer and in other ways more of a challenge. I suppose that can be said about any child – we are constantly told that every child is different as parents when trying to raise our children. I wanted to give an honest account of what it is like to parent a child with disabilities. Particularly, on with epilepsy. This blog post is about our live, and I have also created a page for information regarding epilepsy that I have come across over the years.
So, I will start from the beginning. J was born unexpectedly double breach and gave us a particular scare when being born. To cut a long story short, there was a sign of relief when he came, seemingly okay, in to the world. Unbeknownst to us, he had had a stroke, and three days after birth we rushed him into hospital where after a couple of days we were told about the damage the stroke had caused to J brain. We were told by doctors that he would probably not be able to walk or talk as his stroke had affected the occipital parietal region of his brain (the back, left area). We were shown a diagram about where this was and given a rather dreary view of what his future could look like. It didn’t completely sink in straight away. I am glad it didn’t really as this is definitely not the case today. Although J has had trouble walking, he can, albeit he does use a wheelchair and does need constant assistance to be able to walk without falling over. He can also talk when he chooses; he can also sign to make himself known. He is our little miracle. I have never seen a more determined kid when he wants to do something. He will try and try before he asks for help.
The reason he is like he is now is down to few different people and organisations. We haven’t done it on our own, we had plenty of help along the road – we were very lucky. Jackson developed torticollis when he was a baby. We were referred very quickly to physical therapy to help him straightened up. We were given the opportunity to have multiple appointment a week and although this was a bit awkward with work we managed to do them. We had these appointment for a few years, covering both his torticollis and the weakness in his arms and legs. They gave us a routine of exercises through play that we did everyday intensely. It sounds rather dramatic and overwhelming when I describe it sometimes, but it gave me the excuse to play with my son for hours everyday whilst knowing that it was doing him a world of good. He loved the sessions most days, although he never really likes new toys and exercises at first. J takes issue with new things and always initially rebels or cowers away. It’s heartbreaking sometimes but totally worth pushing through it. He still continues to have physical and occupational therapy at his school which is great. We don’t have to go to so many appointments outside of school which means he still gets his education.
One of the major sources of help was a referral to Bobath. I can’t wax lyrical enough about them. I believe that they were a defining point in my son’s ability to walk. When we went there at 18 months old. He could not support himself, and although a lot of progress was made, he still had a lot of difficulty in using his right sided limbs. Bobath is a referral only charity run therapy centre in Whitchurch, Cardiff, which focuses on child with cerebral palsy. J has not been diagnosed with cerebral palsy but has many of the traits that comes with that diagnosis. To get the opportunity our physical therapy team and doctors had to make an application which went to a panel to decide. We were bowled over when they told us we had been accepted to a course. The course involved an initial meeting to discuss J targets for his therapy and an informal conversation about family support and routine with the family engagement officer.
Bobath Children’s Therapy Centre Wales
Bobath Children’s Therapy Centre Wales provides physiotherapy, occupational therapy and speech and language therapy to children all over Wales who have cerebral palsy. Bobath therapists are state-registered and work together as a team to combine these disciplines to give each child the skills to explore their world, communicate their needs, maximise their potential and so improve their quality of life.
At Bobath Children’s Therapy Centre Wales we focus on the ability and not the disability.
Our mission is ‘to improve the quality of life of children in Wales who have cerebral palsy’.
The amount of care and expertise we were shown was outstanding. It is just a shame that they can only help so many families. Wales is very lucky to have one of these centres. After the initial meeting followed 10 intensive hour long therapy sessions over a period of 20 days. The hour long trip each day was a cheap cost for what we received. Although our local therapy team were good – these are the formula one team of physical therapy. By the end of the 10 sessions J stood up and supported his weight for a few seconds and was getting so much better at using his right side. Like the local regime, we were given a comprehensive list of exercises with photos and instructions of how to focus the exercises using play. It was quite a few months after until Jackson walked a few steps, but we still believe to this day that because of those sessions and the continued regime we followed was the reason that J started to walk and get around.
When I say we were incredibly lucky to the one course, you can imagine how we felt when we received another set of 10 sessions about 16 months later. The focus this time was on using his hand and also his speech. Jackson did not speak words at the time and only made a few vowel sounds. We were given very little help from our local speech therapist who had pretty much told us to wait and that if he didn’t want to try to speak there wasn’t much they could do. The specialist at Bobath did not believe that. She identified one of the reasons why J was finding it hard. We were told that because of his poor muscle tone in his core it was affecting the muscles in his throat and tongue so he didn’t have the strength to get the words or sounds he wanted. She also introduced to sign language to assist his communication. Until then he had just used his eyes and some sounds. It did not happen overnight, but what we learned there laid the foundations of the communication we have with him today. It has made his life, and ours, so much fuller and rich with experience. It used to be so frustrating for us all, mostly J, that we couldn’t communicate the way we wanted to. He still has his moments of mutism but generally he knows how to communicate through a mixture of words, signs and expressions. He still chooses with his eyes quite a bit but he is a million miles away from where the original doctor said we might be. It is not a criticism of the doctor as he was only trying to be realistic. We know now that keeping open minded and hopeful has been a blessing to our family. We live by that mantra as we continue our lives together. Our son’s future is not confined to what we believe he can achieve, but by the endless possibilities he can strive to.
As J got closer to school age we were also given access to portage: a play based therapy to help J get ready for nursery and school. A lovely lady by the name of Maria came to our house once a week. She initially assessed his abilities and we were again given targets to try to reach each week. They would be very simple for most children of J age, but he found them challenging. Whether it be to use a different toy with his weak hand, or to try to draw a circle, they were simple tasks but took some effort by J to master them. We would work together every day in order to try and show off his achievements by the next session. He really loved these sessions and Maria had a lovely way with him which always succeeded in making him smile. It may not seem like much but these types of therapy did wonders for his confidence and self esteem – things really important for children as they grow up. It was sad to end these sessions but one positive aspect of our contact with Maria was that she got us in touch with Y bont. A special needs focused nursery.
Y bont is local nursery, which focuses on helping families with children who have special needs. It is only a small charity run nursery but it has been a wonderful place for J to attend. Initially he only went for a day a week, and then everyday as I went back to full time work in a school. He left there this year after 3 years of attending. Needless to say, he absolutely loved every minute of his days there. I know they loved him to. They were very upset when he finally left. I have to say, so was I. A few tears were shed on his last day. He just smiled and waved. He was ready to be the big boy and go to big boy school. They offer such a unique place for children like J. It was a home from home. They are a small charity which means they have to raise a lot of money to ensure they keeping providing the service they offer. I was lucky enough to help by doing an interview for Children In Need a couple of years ago. It was a great experience. I can’t find an official video on the Children In Need website, but we recorded this video on a phone. Apologies for the quality:
They really are a great team, one that I could not leave out when writing this blog. If you want to know more you can visit their site here:
Or Facebook page:
You don’t have to, but if you would like to help them out you can donate to them on this link.
J now goes to a special needs school. One that is absolutely perfect for him. He calls it his play school. He gets on the bus everyday with other children like him, all of them with a smile on their face and excited to go to school. It is a wonderful thing to see your child so excited for a day at school. My memories of going to school were far more complex. Even at J’s age.
So, I have given you a little history about J’s short life so far. A lot more has happened than this but I would need to write a book to go through it all. The one thing I haven’t mentioned yet in much detail is epilepsy. It took a few visits and conversations for J to get diagnosed with epilepsy. We noticed J had a continuous twitch in his right arm which would last for periods of 10-20 mins to sometimes over an hour. This would happen throughout the day. Although we were told to watch out for epileptic fits, we didn’t really think this was the sign. We expected the full on seizures where the whole body violently jerks – we did not know that these twitches were fits in themselves. To be honest, the doctors we saw in hospital didn’t seem to think he was having fits either. However, after a few visits and conversations we got to have a specialist come to see J, who at first sight, said yes he is having seizures! It was a very casual expression for him, but for us it was a pivotal moment in the rest of our sons and our lives.
We still have a long way to go, and we have a lot happening over the next twelve months. J has been referred to Great Ormond Street hospital for surgical assessment. He may have brain surgery or he may . It is not something we are looking forward to, but we have some amazing support around us, plus he is a little superstar and takes everything in his stride. I suppose the best thing to say is wait and see. Parenting a child with epilepsy has its worries and we all go through our trials and tribulations about what’s best for our children, however we feel completely blessed to be able to live the life that we do. It is rich and fulfilling, with so many amazing memories made already. It has taught us not to take for granted the milestones that others might. The first step our son took wasn’t just a milestone – it was a miracle that we were told wouldn’t happen. The first time he used a cup to drink bowled us away. These events are seared deep into our hearts and minds. We are constantly reminded of how resilient children are and how determined they can be to overcome adversity. Whenever I am going through hardship or challenges of any sort I remind myself of this and it helps me to push through and try to overcome them.