Conductive Education

ce-logoA structured learning programme for children with motor disorders and developmental delay from different origins.

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Parents Stories

 

Jessica3-small Martin2-small Te-Ngaru-Tira-small
Jessica Martin Te Ngaru Tira

Jessica3My daughter, Jessica, was born in October 2008, full-term, following a trouble-free pregnancy. She was a straight-forward, drug-free (not by my choice, she was in a hurry!) delivery. Jess developed normally, achieving her mile-stones slightly ahead of the norm. She fed well, slept very well, toileted normally except for a bit of constipation when she started solids and was a very placid baby. She had good head control virtually from birth. People would often tell me how placid and happy she was and I just thought it was because she was my second child.

When Jess was about 6 months old I noticed she wasn't rolling about as much as she had before. Where she had been on the verge of crawling she now just lay where she was put be it on her tummy or on her back. But she was still happy and placid and we thought she might just be tired from a growth spurt.

One day I took Jess and her brother, Jake, swimming. While in the pool, Jess's face hit the water a couple of times which seemed a bit of a strange thing for her to do. I thought maybe she was so tired she was dropping her head. I got out and lay her on her tummy to undo her swim-suit. Poor Jess dropped her head and head-butted the concrete hard enough to make her very upset and leave a mark across her fore-head. Again, I thought she must be tired.

 A few days later, my husband, who at that time had taken over as the stay-at-home parent, commented that Jess was making funny movements. She would frequently head-butt us in the shoulder when we carried her. Then we noticed that when she was lying down she would make a series of jerking motions where her legs would contract up towards her tummy and her arms would fly out and over her head. Her back would arch, pushing her head back and her eyes sometimes rolled a little. There was nothing we could do to stop these episodes which could last for up to ten minutes and consist of 20 or 30 individual spasms. It had also become harder to get a laugh out of Jess.

Even then, we thought maybe it was reflux as we often noticed it after she had a feed. Still, I was concerned enough to take Jess to her GP who ruled out reflux but thought maybe she had hiccups. He referred her to a paediatrician which under the public system would have taken six months. Fortunately Jess had medical insurance but even then it would have taken two weeks to get an appointment. By this time I'd started getting a bit worried so I started ringing paediatricians all around the country to see if they would look at her spasms by email. I had a short video of her during one of her episodes.

Luckily a paediatrician in Christchurch was happy to view this video and emailed me back to tell me that Jess needed to go to hospital as an 'emergency fitting admissions'. This was when I found out that she was having fits/seizures.

We went to the Emergency Department where she was tentatively diagnosed with Infantile Spasms. An EEG (like and ECG but on the brain not the heart) the next day confirmed the diagnosis. Jess was started on high-dose steroids and became seizure free after 6 days. She has remained seizure-free (touch-wood) now for two months and 22 days and yes, I count every minute of it. She was weaned off steroids after about five weeks and was ready to begin her recovery.

Infantile Spasms is formally known as Catastrophic Childhood Epilepsy. When it presents with hyppsarythmia (hypps) (a distinctive brainwave pattern) and/or developmental delays or mental retardation it is known as West's Syndrome. Jess had both hypps and developmental delays although the hypps had cleared up at her last EEG.

Having done some research, I now know that there is anecdotal evidence that children with Infantile Spasms have often previously been developing ahead of the norm and also very placid. There even seems to be a number who have suffered constipation although I don't know of any medical evidence that links this as a symptom.

I haven't been able to find many studies on Infantile Spasms but the biggest I could find showed a mortality rate of 1 in 3. Fortunately I didn't find this study until a wee way down the track although I suspect my husband read it the night we got the diagnosis. This mortality rate appears to be generally down to underlying conditions causing the seizures. Of the surviving children, 40% recovered to normal or close to normal. This 40% is primarily made up of children who are ideopathic (have no underlying cause). From memory it may have been almost 90% of those who made a full(ish) recovery were ideopathic. Fortunately Jess is ideopathic so has the best chance of a recovery.

At her lowest, Jess regressed to the skills of about a six week old baby. This was while we were in hospital and Jess would lie in her cot, not smiling, not playing, only communicating by yelling if I didn't feed her fast enough. She loved to be cuddled and fortunately the extended family gathered round to help out as lugging around a baby that has gained an extra kilo from the steroids all day can be tiring. She had very little head control and she could fly into a 'roid-rage' at the drop of a hat. Not the funniest time in parenting.

 When we were released from hospital after 15 days, we could only tell that Jess was trying to connect to the outside world because the fingers of her right hand would do tiny strokes at whatever was immediately underneath them.

But from this hellish phase, our lovely baby has gradually re-emerged. She is still delayed and whether she will crawl or walk remains to be seen but she can sit unsupported, she can get wherever she wants to be with a combination of swimming and rolling across the floor. She can swallow and eat well and burbles away to us with lots of 'Dada, Baba, Gaga, Yaya'. (Isn't it wonderful that they say 'Dada' before 'Mama'. It means at 5.30 am, us mothers can kick the fathers out of bed because that's who baby is calling for). She's cheerful and placid and has two tiny teeth (delayed teething and growth may be another symptom).

 

Martin1My son Martin has been going to the conductive education preschool since he was 14 months old till he started main stream school.

What I love about conductive education is the whole inclusion of the family.

Martin has got a twin brother Eric and they both were very welcome. Martin gets treated the same way as Eric or his baby sister Natasha.

At the conductive education centre there is the understanding that a parent will always want their best for their child and the staff listens to the parents, caregivers and all who are involved in looking after the physically challenged child.

It is the overview picture, always see the child Martin first and not treat him like the label cerebral palsy. Or just see his limitations or the different hospital diagnoses of epilepsy, squint, poor vision, delayed speech, delayed development, poor posture, poor balance, tight rope walking, non functioning left arm, dealing with orthosis, medical treatment to reduce spasticity, surgical treatments etc.

It is enough to make you sometimes want to cry if you look to close to the list of problems.

I love the attitude of what we can improve through exercise, play and how to give Martin the same stimuli as his twin brother, without the focus on the parts Martin can’t do yet.

How to overcome obstacles and encourage him to explore his environment and relationships just like any other child.

The range of different experiences (music, art, play, exercises, stretches. tasting and tactile experiences) in an environment that is set up to achieve goals, goals are broken down to baby steps and while challenging still achievable for every individual child.

Plus the caring and stimulating environment from the staff and other parents as you all support each other and celebrate each child successes or to just be there when there is a temporary set back, or your child isn’t making as fast progress as you would like….

It is a different approach from the normal physiotherapy, where every child has to go through a range of movements to reach the next level…

My child has got cerebral palsy and is disabled so to hold back on experiences because we haven’t reached the next level yet, feels wrong to me.

At conductive education Martin was given (walking) aids to move him to the next level.

He got the motivation and freedom that moving independently brings.

Martin could explore and expand his play, and was able to join Eric in play.

Later on conductive education helped me as well to advocate for Martin to include more physical exercise and because he is expected to participate at conductive education I like to think he will give more things a go even if he is disabled and to be flexible and find targets and goals he can reach..so he can be included in the normal school curriculum.

We still see the staff at the preschool unit for the after school care programme on Monday and Thursday. Monday stretches and exercise and Thursday to the pool for swimming.

Thanks to conductive education Martin has been introduced to riding for the disabled at a young age and he is still continuing with their riding programme….

Conductive education has opened up opportunities to get Martin functioning the best as he is able to and I would like to thank Andor and his whole team of getting Martin where he is now….

 Kitty Parker.

Te-Ngaru-TiraTe Ngaru-Tira is 3 years and 3 months old. She is the eldest of triplets, her brother Tipene and sister Te Amokura. She has an elder sister and brother, Teliah-Maia 10 years old and Tuteari 7 years old.

A few days after their birth at Waikato Hospital, we were told by the paediatric surgeons from the NICU unit that she had had a grade 4 and grade 5 bleed to the brain. We were given information from the doctors that she may not be able to do the usual things like suckling, walking and all the things necessary to live a good life due to the severity of the bleed. It wouldn’t be until she reached those milestones before we would know whether she would have severe cerebral palsy or not.

She has mild cerebral palsy, is a hemiplegic and has a shunt on her left side due to hydrocephalus. She is weak on her right side.

My mum did some research about what was available for Te Ngaru-Tira to help her and she came across the Conductive Education School and made it her business to make an appointment with Andor and his team to see what they did.

It took a bit of persuasion before I decided to go ahead with Conductive, more because we lived in Gisborne and Conductive was in Wellington and I think I was denying that she would have a disability. Once we met Andor, we knew in our hearts that it would be the best thing for her and having my mum, sister and dad live in Wellington helped us.

Te Ngaru-Tira started at Conductive in 2008. When she started she was just learning how to sit up at the age of 15 – 18 months. When she sat at the table she needed to hold on to a handle to support her sitting. She felt like she was a big girl. She wasn’t very interested in doing stretches and would sometimes fight not to do them; it may have been because I was there with her why she was resistant at times. Her right side would tense up when she tried to attempt things, and we would see the differences in her development when comparing her with her two siblings. Being a triplet gave her and us a better advantage of knowing what milestones she would have being doing at certain stages. She wasn’t behind by much cognitively but there was still a difference. Her motor skills were way behind and Te Ngaru-Tira seeing her siblings doing things she couldn’t only made her more determined to do it. She went through a phase of bum shuffling which she still does if she’s tired or is unable to walk.

She first started going to Conductive two weeks a term, this helped her and I learn skills to go home and do. However she attended the majority of Term 4 of 2009 and also attended full time in 2010. She has made huge gains. Last Term was a big milestone for her as she started to walk independently. She also learnt how to sit up and lie down, and did her stretches without any hassles, most of the time. She also found her voice, doing a lot of instructing “Who is the teacher?” She was just starting to do these things at home but when she attended Conductive every day, her confidence was building up every minute, every hour she was there. I realised that if we wanted her to be independent she needed to attend more than two weeks a term, it was essential for her well being.

She also doesn’t like animals and for her to try new things we always we have to explain it to her beforehand.

With the help of Andor and the Conductive Team, she has learnt so many things to get her to where she is now.

She is walking more and more independently, she can sit up and lie down, she is very flexible when doing her stretches. She is walking up and down steps confidently, walking backwards, she is less tense on her right side and when told to open out her right hand she will. She will also try to grasp with her right hand. She is starting to get use to animals now, and even riding on a horse every Thursday. She is very argumentative and bossy as well.

Our focus is for her to be walking all the time and using her right side more, since she started walking she sometimes decides to no longer walk for reason s unknown. We still need to determine why this happens.

We are all very grateful for the support and love that the team gives to Te Ngaru-Tira and we try to be very supportive back to the school.

Thank you Conductive Education for making a big difference in Te Ngaru-Tira’s life.

Ngaa mihi aroha.