MATTHEWS STORY
I was lucky to sail through a relatively trouble free pregnancy with Matthew he was just in a hurry to see the world arriving only 2 days early but within a half an hour of arriving at the hospital. I wasn't aware of any difficulties that Matthew was experiencing other then being a little concerned that he didn't cry straight off like my first 3 children did.
It wasn't until later that my mother said she had seen the umbilical cord wrapped around his neck. No one had bothered to tell me. He had his nose suctioned and was on oxygen for a few hours but at the time I didn't think too much about it. I didn't notice until recently that his Apgar results were only 2 or 3 out of 10 (Not at all good).
We took him home as normal and when he was about 2 weeks old he had some sort of infection with a fever I did what you are supposed to and gave him a tepid bath and paracetamol. Shortly after, he started to punch out with his arms and legs. With my nursing background I knew what was going on but I pushed it to the back of my mind and hoped that it would just go away and I wouldn't have to think about it again. This wasn't to be the case. After a couple of minutes I rang the ambulance and Matthew was taken to hospital for medical attention. This seizure only lasted about 5 minutes but it seemed like an eternity. His father didn't want him to go and had suggested that he would be fine. This was the first sign of his father's denial; it wasn't to be his last.
At 3 months of age he experienced his second lot of seizures. He was terribly sick this time and was placed in the neonatal ward. He looked so huge compared to the usual premmies he roomed with. He was so fragile with IV's attached and he needed a battery of test from lumber punctures to EEG's. This is when he was diagnosed with having infantile spasms and epilepsy. (The infantile spasms look like colic where the child will lurch forward in a singular motion). That was 2 weeks of immense stress for the whole family.
We had a total of 6 hospital stays over his first year, every time he got sick he would have more seizures. It has only been in the last 12 months that he has had any real control of his seizures and even then he still has absents seizures when he is tired (when you stare off for a few seconds, it looks like day dreaming).
Matthew is 3 now and is about 12 months behind in his development, which is great compared to where he was a year ago. It took Matthew 1 year before he could sit upright without assistance; he was 2 before he crawled and 2½ before he walked so as you can see his progress in that area is sensational. Matthew also had a huge tactile issue. You couldn't wash his hair, put on a hat or sunscreen without him putting on the biggest fuss. He couldn't tolerate any vibrations or loud noises, it took him 4 sessions of horse riding before he would put his helmet on acceptingly and he loves riding. These days we find him extremely tolerant and now he will even participate happily in messy play. I am very proud of how far he has come.
I give credit for this incredible improvement in his development to a few things one offcourse is the reduced frequency of his seizures, the less frequency of ear infections by getting grommets put in place, the reduction in medications from 3 to 2 types, IDSC - Intellectual Disabilities Services Council playgroup and therapies, day care and family day care and hydrotherapy when he was younger. I also know from experience that when no one will give you the help that you need, you need to jump up and down and demand it. So that is exactly what I do when needed.
I place great importance in keeping up constant stimulation through changes in settings and activities, day care and family day care have all been fantastic for this, providing me with a well deserved break whilst giving Matthew the opportunity to explore new things, extend himself to his fullest potential and he also gets that unbeatable therapy of social stimulation that does so much to improve self awareness and just trying to copy the other kids is a great incentive, you just can't beat that, or for that matter simulate that sort of atmosphere at home without becoming a day care provider yourself that is.
Matthews father still has some issues regarding denial and his son. I don't find this at all surprising with his family showing absolute revoltion at even thinking about Matthew having a seizure even when he was a baby they would hand him straight back if he just twitched. They just couldn't cope. Even now things have improved slightly but they still run a mile in regard to his epilepsy. Gary has come a long way also, even attending some of Matthew's therapy sessions like riding for the disabled and with delightful disbelieve recently attended a retreat for parents of children with epilepsy in which he thoroughly enjoyed himself over the weekend. He sure knows how to surprise me sometimes. It is really nice to see him take a more active role in his life, as Matthew gets older.
I worry too about the stresses Matthews epilepsy puts on my other children especially when he goes into hospital. Fortunately this is a rare occurrence these days. Matthews older brother is not without his own health issues being a diabetic and teenager. What a lethal combination, with his teenage stubbornness and not taking his own medication, he is having his own seizures, the difference being that my teenager has a choice my 3 year old does not. A friend and I joked one day that one night (as they sleep in the same room) they will both have seizures and end up beating each other up.
I love that my mum always gave us support and has always demonstrated full acceptance, guidance and help when I and Matthew needed it she has been my rock.
I look forward to Matthew's future I can't wait to see what lays ahead for him. Life just keeps getting better for my son and let's hope it continues to do so forever.
Rosalie
Click on one of the following links to read about these children and their families.
Jarod's Story A 3 year old with epilepsy, cerebral palsy and global developmental delay.
Samuel now 2 has a vision impairment and associated delays.
Georga has started kindy now. She was a floppy baby at birth and has recently started having seizures.
Matthew is 3 and enjoys life. His development has improved incredibly since the early days.
Izabella has dispraxia. Find out her parents worries, fears and hopes.
A grandparent shares his wishes, joys and fears with respect to his disabled grandson.