I recently met with someone who opened my eyes to how different life can be. How your world and expectations for your child can change so quickly.
Melinda (‘Mel’) is a remarkable person, friend and mother. Her son Darius is 3 and has epilepsy and cerebral palsy, but he is much more than that. He is a little boy with great parents who are doing their best to give their little man the best life possible. Whilst it is certainly not easy, Darius is one very lucky little man to have such great support around him.
Here Mel opens up about life, her family and the journey they are on together.
Central Nest: Hi Mel, thanks for chatting to us today. Tell us a little about your son Darius.
Mel: Darius is aged 3, but is more like your average 18 month old. The background to his story goes a little like this.
I had a fairly normal pregnancy. Our little man was 4 days overdue and once born had normal Apgar results (9 & 10). He needed no assistance with his breathing and for the first 12 weeks was fine and just like any other baby.
I had trouble feeding him and when the community nurses weighed him at our local mums’ group he had lost 200 grams. The health nurse then advised us to put him onto formula. After doing this we found he started to progress a little bit but he still didn’t do what the other babies were doing. For example when he was on his tummy he wouldn’t lift his head, he didn’t roll like other kids. I started getting worried but everyone just kept telling me that boys often develop slower than girls and not to worry.
Central Nest: When did you realise that something was seriously wrong?
Mel: When he was 6 months old Darius was laying on the floor and all of sudden went stiff and his eyes rolled back. I couldn’t get in to see my GP so I went to the hospital.
I remember that I could hear nurses saying things like “She’s just a first time mum and he is teething”. I honestly thought I was overreacting.
The paediatric team (6 people) came down to emergency to see him. He had grand mil seizure in doctor’s arms and he was wheeled out to emergency and incubated. I remember how scared I was. My little man was given medication to try and stop the seizures.
I was alone because no one knew I was at the hospital. I hadn’t even told my husband because I didn’t want to worry him at work.
Initially they thought Darius had meningitis and sent him for a CAT scan. He continued to have more seizures. My little boy was also given a lumbar puncture. I had to leave the room. I wasn’t able to be in there with him. They finally confirmed it was not meningitis.
Central Nest: How scary, what happened next?
Mel: Darius was sent for an EEG (which reads electric waves in a person’s brain). They decided that due to the number of seizures it was epilepsy.
Once we had a diagnosis we were given medication and he started to improve and settle down.
He was also diagnosed with cerebral palsy and a global development delay.
Central Nest: What causes cerebral palsy?
Mel: It is caused due to lack of oxygen to the brain. It can be caused before birth so the child can have a stroke in the womb or during birth if there is a problem. They have decided that Darius’ cerebral palsy wasn’t caused during labour or before birth as they can see that on MRIs. So they suggest that it probably happened sometime within the first 12 weeks. Maybe he had a seizure in his sleep, but we may never know definitely what happened.
Central Nest: How did you handle his diagnosis?
Mel: When I first heard the diagnosis I don’t think I absorbed it properly. I left the doctors thinking ‘ah okay’ and didn’t think much of it. It took about 4 months to really sink in. I was diagnosed shortly after that with anxiety and depression. I think it was around that time that I finally saw the bigger picture and what our lives would become.
Central Nest: How have your family and friends handled the diagnosis?
Mel: Some people have been great. It definitely has shown us some people’s true colours. Heartbreakingly though, some people have not handled it as well. Sometime people will ignore Darius and myself if we see then down town. Often my husband’s older daughter (aged 6) is invited to events but Darius is not. I guess it is because they don’t know how to handle Darius. What they don’t realise is that in a lot of ways he is much like a typical 3 year old!
He loves Thomas the Tank Engine and cars. He often throws a tantrum if he doesn’t get his own way. He is full of life and pulls you in with his smile. He has the biggest personality.
Central Nest: He does sound a lot like a typical 3 year old! How do you balance his development age of 18 months with his actual age of 3?
Mel: It is hard. We have to balance things constantly. While some behaviour we have to let go of because developmentally he is only 18 months old but we also don’t want a bad behaved-tantrum-throwing 3 year old!
Having said that, he is normal to us. It isn’t until we see him with other 3 year olds that we realise how different he is. I have a picture in my head that says even though out loud I say he is aged 3, to me in a lot of ways he is 18 months old.
Central Nest: What do you find are the hardest things about having a child with special needs?
Mel: I often see people on social media complaining about having sleepless nights because their children are teething. Or their child has a cold. I just want to say to these people ‘Think yourself lucky that your child is healthy’. People whinge that their child is on antibiotics, my son is on medication everyday for the rest of his life. Everyday.
Don’t think how terrible your life is. Realise a cold is a cold and it will go away. Your child is healthy.
Social media upsets me. I always think ‘you really don’t know how bad it can be’.
Central Nest: What therapy do you participate in?
Mel: Darius started therapy at 12 months old. We were lucky enough to meet Alana George at Early Intervention in Bathurst. She is the first person who is non-family member that has been able to look after Darius. She is not only our respite carer but an absolute angel. Darius and Alana just clicked.
Central Nest: What is your usual routine?
Mel: Each week can be different due to appointments but on most Mondays Darius does swimming lessons and participates in Early Intervention.
Tuesdays are physiotherapy days and speech therapy.
Wednesday he attends daycare.
Friday we attend music therapy and riding for the disabled.
Central Nest: So is Darius able to participate in standard daycare?
Mel: Yes he is. The only difference is that Darius is in the toddler room because he is unable to walk. We will be holding him back before school so he is now with the children he will go to school with.
Central Nest: Did you experience any trouble trying to find daycare?
Mel: As I had to disclose straight away that he had special needs I did find it interesting watching the reactions of the child care managers once they realised they would have to get funding. Luckily the daycare he attends now have never had an issue with applying for funding. They also regularly go that extra little mile and attend additional special needs training.
Central Nest: Do you need to pay for early intervention?
Mel: We very lucky in Bathurst that it is free. Many others places have to pay. Even Orange have to pay for a lot of therapies themselves.
As there is a Cerebral Palsy Alliance in Orange we are able to undertake speech therapy with them. As Darius was diagnosed under the age of 5 we are able to get free therapy. We have any arrangement though whereby they come to Bathurst one time then I travel to Orange the next time. This is to try and save funding.
Central Nest: Do you know many other families in the area who need to pay for their own therapy?
Mel: There are people I know paying $80.00 or $90.00 per week for physiotherapy then often the same again for speech therapy. Plus, of course many other different therapies as required.
Central Nest: Are you able to work?
Mel: No, I had to give up my career with the Attorney General’s Department to care for our son. The carers’ pension is so little but it is our only option.
Central Nest: How do you make the pension spread to cover all your expenses?
Mel: We are lucky in Bathurst because the paediatrician bulk-bills. It our experience Bathurst is a good disability hub. Even if we moved to Lithgow or Orange it would be completely different. What you are entitled to all comes down to diagnosis. My little sister’s child has similar needs to Darius but because she doesn’t have that formal diagnosis, she doesn’t get the assistance and has to pay privately.
There have been a few times we have looked at moving for a new life, a new start. However we can’t leave. The services are to expenses in other places.
My husband Mick works such big hours. So it is hard. If Darius isn’t at therapy we are doing therapy at home. He can’t feed himself (except maybe lunch). This is because in morning his muscles are too tight then at night he is too tired again to feed himself. There is also no point trying to toilet-train Darius because he simply doesn’t understand.
Central Nest: What is Darius’ prognosis?
Mel: At first they didn’t know if he would walk. But recently he has started walking with a push walker and he is cruising around furniture. He will forever have an ‘uncoordinated walk’ and will need a wheelchair and walking frame on his tired days. We have applied for a wheelchair because it will take years to get one.
When we are finally able to get a wheelchair then we will then need further funding for car modifications so as to fit his chair.
Central Nest: Do you find applying for finding difficult?
Mel: The biggest thing we have found is that doctors and Centrelink often don’t tell you what is available. You have to find the funding yourself. People are hesitant to tell you.
Central Nest: Do you think advances in technology help with having a child with special needs?
Technology helps so much. In particular the Ipad. Darius has also been selected to try a talking board Basically you are able to select pictures and it talks for you. Usually they only trial them with older children but the therapists believe that Darius is clever enough with technology to use it.
Central Nest: What do you think will be the best benefit for the talking-board?
Mel: To use it for his own opinions. Just simple things like “No, I don’t want water, I want chocolate milk”. At the moment I make every decision for him. At breakfast I decide weetbix as opposed to toast and jam instead of Vegemite. He doesn’t get to make that decision. He gets so annoyed. Also I understand when he tries to use sign language but other people don’t. So he often gets frustrated when people get it wrong. This technology will hopefully help with those problems.
I like to think that in 10 years from now even if his speech is delayed, due to technology he will always have something to help him.
Central Nest: Where do you find most of your support?
Mel: Online I find a lot of support. Epilepsy Action Australian has been a savour. Within 6 weeks of Darius’ diagnosis they did a course in the Central West which helped us so much. I have an epilepsy nurse who has also become a really good friend. We have also been lucky enough to attend some epilepsy respite camps.
When Darius was diagnosed I used to look at a person I know who is a quadriplegic solicitor. He is a respected professional, a husband, a dad and just a good person. I thought to myself if he can do it, we can. Maybe Darius can have a future like that.
Central Nest: How does having a child with special needs impact your relationships?
It is so hard on your relationship. I have had a number of friends (about 3 or 4 within a month) who have split from their partners – Either one party couldn’t handle disabilities or just wouldn’t accept what had happened.
Statistically there are so many couples who have a child with special needs that end up separating.
My husband and I just try to maintain a strong relationship and make time to be together when we can.
Everything I do for Darius and it is hard for partners to understand sharing. We have found it really hard in particular on my husband’s daughter. It was fine when Darius was a little baby but she doesn’t understand why he isn’t walking and talking like other 3 year olds. Sometimes she gets jealous because so much time is needed for him. She is required to grow up more than an average 6 year old.
Central Nest: You have been quite proactive in creating support for families in the Central West (and across the country) for parents of children with cerebral palsy. Where can people find you?
Mel: A lot of kids have cerebral palsy and epilepsy. They seem to go hand in hand.
I have created a support group for about 120 people across the country. I started this about 8 months ago for parents with cerebral palsy. We share information regarding therapy ideas. Our group is called Cerebral Palsy Parents Australia. You can find us on Facebook (see link at bottom of article)
You may have seen a little boy named Blaise on 60 Minutes recently. We are helping his mother to fundraise so she can go back to America to use to therapy suit again.
Central Nest: How do you find the community of parents with children who have special needs in the Central West?
Mel: We find a lot of parents out this way often don’t want to talk – we pass each other at different therapy groups or different doctor’s offices. A lot of the older generation can’t seem to handle it. A lot of kids with special needs are in foster care because their parents just weren’t able to provide the care for them.
I attend a morning tea once a fortnight with parents. The group brings in a carer in to look after the children so the parents can have a coffee, a chat and a whinge!
Central Nest: Do you think you have accepted that you will forever have a child with special needs?
Mel: I found the hardest part of Darius’ diagnosis was the lost dreams and expectations I had for my child. My child will never walk unaided. He won’t play sports. I think after about 12 months I finally accepted it. I remember the doctor asking me once day if I was okay and I just broke down. He said that’s good. The acceptance has finally happened.
My family knows the signs if I am not coping and no when to step in and help out.
I think back and when you fall pregnant you have all these aspirations for your unborn baby. You think you child will grow up and do such and such at this age. When pregnant I read all the books about babies and children. Not one covered not knowing if your child will ever walk.
We have to ask questions like Will he be able to live by himself? Will his sister care for him after we die? Is that one of hardest things to come to terms with? Yes it’s the not knowing.
Central Nest: Do you think in the future you will look at having more children?
Mel: The choice for more children has been taken away from us. We have been told we have a 1 in 3 chance of having another child with epilepsy. It is genetic through Mick’s side of the family.
His two older children don’t show any signs of epilepsy but there is a chance they could develop later in life. For example perhaps when his 6 year old daughter reaches puberty the hormone changes may trigger it. They might never get it, but the next generation might.
Plus, we know people that have had more children but it is hard and often leads to resentment. It is hard to balance normal children and children with special needs.
Central Nest: So where is Darius at now with his health?
Mel: They are still looking at why Darius is failing to gain weight. His vitamin levels are very low. Recently some tests come back saying he may have a mitochondrial disorder. This effect the enzymes in the body. It can shut down a child’s organs by the age of 10. My son is 3. Don’t Google it alone. Trust me on that!
It basically means that Darius is unable to nutrients and can’t absorb proteins. So in turn he gets tired very quickly. His body can’t learn to walk and talk if its tired.
Central Nest: Do you have a moment that stands out as a proud mummy moment for you?
When he was 12 months old, it was actually on his birthday. He rolled for the first time. Most parents have that about 3 -4 months but I remember so clearly.
Another time when he sat unaided and threw a ball to his sister, I remember just watching him interact with her and thinking he is no longer just a baby.
The littlest achievements are often the best for us. The cerebral palsy is more dominant on the left side of his body. If he feeds himself I get excited. Then he realises he is doing it and he gets excited.
He gets so excited when he stands in his walker that he falls over. He waits for the praise.
I guess I have learnt not to take any milestone for granted. I treasure every moment. When you are working you miss so much. I can say to working mums that I worked fulltime for 2 years and I really appreciate spending time at home. The doctors think he wouldn’t have developed as well if I was still working fulltime because I am able to do daily therapy.
Central Nest: Thank you for sharing your story. You are very brave.
Mel: No worries, I like getting my story out there because not just here, but across the whole country people don’t understand the isolation. Some days you just can’t get out of the house because he can’t leave. People don’t think to call and see how you are doing. Because I don’t ask for help people don’t think to call.
I guess I just want people to be aware if you know someone with a child with needs. They are just like any other mum. All mums needs time out. Don’t isolate. Still invite them to birthday parties and outings. Be aware of disabilities. Be aware all people are doing it tough. But people with special needs are working 24 hours a day 7 days a week. He cries because of pains all night then he just wants to lay on me all day.
Having said that as bad as my days are he can just look at me and it makes it all worthwhile. I remind myself that other people have it tougher.
I would never put him back. I would never do anything different. It is what we have been dealt and I look forward to watching our little man grow.
You can find Melinda’s support group on Facebook at Cerebral Palsy Parents Australia or for epilepsy support Epilepsy Parents Australia If you would like more information on Mitochondrial Disease head here -> Australian Mitochondrial Disease Foundation.