Our daughter Isla has a rare chromosome disorder 2q23.1 Microdeletion Syndrome (aka MAND). This causes autism, development delay and epilepsy. 

We are in such a good place now with Isla.

Ten years old seems to be the magic age where everything has come together for us.

No, she hasn’t just become neurotypical all of a sudden. She is still our quirky, sweet girl with absolutely no filter.

She is also developmentally behind. It just seems she has achieved so much lately and hit so many milestones. It is so encouraging!

There are many things that have contributed to Isla’s development over the past 10 years.

I will aim to highlight the game changers from when we were first diagnosed. I have written about things as they have happened along our journey on my website www.simplyisla.com.

I have provided the links for quick reference to each blog post if you are interested in learning more.

1. Early Intervention

This came in the form of speech therapy for Isla. We started the process at 2 years old and therapy began at around the age of 3.

We attended the Hanen More Than Words course and learned a bit of Makaton Signing.

These were both worthwhile providing us strategies to help cement her learning at home.

Her motor skills didn’t seem too different from a normally developing child in those preschool years and we didn’t really receive help for these until at school.

2. Moving from Mainstream school to a Satellite Class 

Mainstream schooling wasn’t the best place for Isla to learn. She couldn’t keep up, couldn’t keep still and it wasn’t the right environment for her.

She spent most of the time out of the classroom with her behaviour reflecting her inability to cope.

Moving to a Satellite Class where she felt competent, more included as was structured for children with additional needs was the perfect fit for her.

Her special teachers and aides have really helped her become the girl she is today.

3. Getting an Assistance Dog

We received our loveable Golden Lab, who had been trained for autism when Isla was 7 years old. He is a tremendous help in letting Isla access the community and walk to school.

He helps her sleep better and is a constant, nonjudgemental companion.

4. Her Carers

For the past few years, we have had some wonderful students in their last year at school spend time with Isla in our home and take her out on outings.

This has been great at helping Isla with her social skills and teaching her ways of keeping herself occupied.

As well as giving mum a break!

This has been one of the best things I have put in place for Isla and our family.

5. Medication

Putting Isla on Fluoxetine (an SSRI otherwise known as Prozac) has been quite life changing. We were initially prescribed this for anxiety.

Her fear of ice, for example, was causing her to have breakthrough seizures. As well as helping the anxiety, we noticed her reactive behaviour, resulting in tantrums and crying, became less and less.

As this was a gradual improvement I thought she had just grown out of this behaviour.

However, it became clearly apparent the positive effect her medication was having on Isla’s behaviour when she started growing out of her dosage.

At the beginning of this year, as well as seeing huge separation anxiety, she had become withdrawn, defiant, irritable and started over reacting and crying every day.

I must admit I struggled with the decision to increase her meds as I wanted to believe she didn’t need them to progress.

However, within a few days of increasing her medication, she was a different girl.

We had our happy, engaged, chatty sweetheart back.

6. Holiday Club

We have some truly special people in our lives.  Isla and some friends are taken on adventures by 2 “school holiday angels”.

Isla would struggle to attend a regular school holiday programme but this makes her feel part of a social group.

It also exposes her to a lot of activities she would not normally do on her own without her peers.

There are many places we can now go after she realises they aren’t so scary after all.

7. Activities/Therapy

It took me a while to find them but we now have the perfect combination of after-school activities that cater to our kids with additional needs.

Without her knowing it, they are all different types of therapies teaching her new skills while she has fun.

We do art therapy, OT based therapy, Equine (horseriding) therapy and next term we are starting music therapy!

Isla also works with a Neuro-Developmental Therapist and is currently doing a Reflex Stimulation and Inhibition Programme.

She also has OT/physio/speech and language goals at school.

8. Friends

Isla has lots of friends she has met through her class at school and her activities.

They are caring of one another and nonjudgemental and their friendships are so important to Isla.

She never feels like she is missing out on anything as her friends (along with her carer friends) provide everything she needs.

9. Family

Isla has awesome sisters that adore her but keep it real.

A father that would do anything for her and reads to her every night and a Nana that is her special person and is like her second mum.

Her extended family are all supportive and accepting of Isla. They have all shaped her into what she is today.

She has also made me become a better person and has taught me so much.

10. No Devices

This has been a recent but huge developmental leap. We have been device free for 5 weeks now and the changes have been unreal.

She is more enthusiastic about pretty much everything now we don’t have to compete with devices.

She is now participating in the real world rather than a virtual one.

I cannot believe the difference in Isla since removing screens 5 weeks ago.

She had a few to chose from! The iPad, the laptop, the computer, and the Nintendo Switch, I stupidly bought her for Christmas thinking it would help with her social interaction….it didn’t!

The humble TV was never switched on with her preferring to flick between YouTube, Minecraft, the occasional game and her Nintendo.

The television is now the only screen Isla is allowed with family movie nights now and again!

Firstly let me say I am not the Device Police

Devices were ruling our life at home. Isla would wake early, often at the uncivilised time of 4 am or 5 am, purely to get back in front of a screen.

She would choose to stay in her virtual world over pretty much everything else, including interacting with others.

After seeing the complete change in her since removing devices you may question why we didn’t do it sooner…. there are many reasons.

So if you are reading this and still in that place I don’t want you to feel any guilt or despair.

I would refuse to read any articles about how modern-day technology was bad for our children’s brains.

Although I used to sometimes wonder what she may be doing if she didn’t have access to devices, it was always in the too hard basket. I simply didn’t have the energy.

I also don’t regret exposing Isla to technology.

In fact, I’m really grateful for devices as they helped us get through those early years.

In Isla’s first 10 years of life, she was impulsive, hyperactive, reactive and pretty hard to parent. They definitely helped save my sanity.

A screen helped us toilet train. The only way we could get her to sit on the potty or toilet long enough was in front of a screen.

A screen helped her try different food. The computer distracted her enough to mindlessly eat and then she would realise this new food tasted good after all.

A screen allowed us to go out for dinner as a family.

A screen helped teach her to read. She surprised me one day when reading out all the Minecraft elements.

A screen helped her to learn. Isla has an enquiring mind and would often search YouTube videos to explain things where she needed a more detailed description.

A screen stopped the house being destroyed while I was busy around the house.

Isla has poor impulse control/executive functioning. She often touches mindlessly, unscrews and unpackages everything (I partly blame YouTube What’s Inside!!).

A screen gave her sensory feedback.

 Isla is a huge sensory seeker.  A device seemed to give her the visual input and stimulation she needed to keep regulated. She was in control and this made her feel good.

It all sounds pretty good and harmless right? It was but then it wasn’t.

I came across a really good article “The 4 Week Plan to Reset Your Child’s Brain“.

It is an overview of a 4-week program that psychiatrist Victoria Dunckley, M.D. developed to reverse the impact of too much electronic screen time on the developing vulnerable brain in children and teenagers.

From this, I devised a plan to start our device fast or detox.

One of the recommended steps was doing a thorough “screen sweep” and completely removing all devices. This had never really occurred to me before.

The way I had previously attempted reducing screen time was to slot it into her visual schedule.

She was allowed it upon waking and then again as a reward after getting ready for school.

This never worked.

She would sneak it down at breakfast or find another device to go on if the iPad was taken away.

If I managed to keep her slightly on task she would rush through everything mindlessly so she could return to her chosen screen.

Suddenly armed with this new strategy of going “cold turkey” I felt more confident I could do this. I fully expected there to be tantrums and resistance though.

I explained to Isla how it was bad for her brain and we were going to have a month’s break from devices. She actually seemed okay with it.

I don’t think she fully believed it and I was prepared for some backlash.

So we started. It was my job to teach Isla what to do with no device to fill her time.  I planned to have the day structured with various activities to choose from but it turns out this wasn’t needed or wanted.

Isla’s Device Fast – The First Four Weeks

The First Week

On the first day Isla woke and scoured the house for a device. With no iPad or laptop to be seen, she ran down to check the computer.

The cord had been removed and she looked a bit panicked!  She finally settled down to read and listen to a new CD book once she realised we were for real.

Was nice to see her arrive in the kitchen and help peel a carrot for her lunch.

As after-school activities don’t start up until next week I booked in Isla’s carer buddies in every day after school.

Isla is already used to having no devices when they are here.  She enjoyed a week of playing babies, board games, pretend play and art with her student friends.

She went looking and asking for a device at every opportunity for the rest of the week.

Mornings were the hardest.

She would make numerous attempts to turn on the TV. Found her Leap Pad at the back of her wardrobe and started charging it up.

She even resorted to playing with the phone and its tiny screen!

I had to tell her that all her devices had been removed from the house to prevent her from climbing up the bookshelf and pulling the cushions from the couch.

I also explained to her that we weren’t taking all these things away to punish her but to help give her brain a break.

It wasn’t until day 5 she made no mention of a device.

Even though she was constantly looking we did not have one meltdown and this was really surprising.  From day one she seemed calmer, more engaged, less drained and balanced.

As the week went on she became less manic and hyper, not trying to rush everything to get to the iPad.

Her sleep improved. Some mornings she was sleeping to 7 am.

Often she would wake up and then, realising there was nothing better to do, would go back to sleep.

She spent more time in the garden, playing with her sisters and even went on a scooter ride after a day at school!!.

We constantly had to keep her busy and distracted. Every time she was at a loss I would give her suggestions of what she could do.

We read photo books, travel scrapbooks and Rainbow Magic chapter books together to fill the gaps that were previously spent on the iPad.

It took until day 4 for her to start playing with her toys again.

Day 5 was a great day!!! Isla was out of her virtual world and in the real world.

She started making her own breakfast and lunch. Put on some washing. Used the Dustbuster to clean front entrance. Did therapy exercises. Topped up the dogs’ water.

Cleaned own teeth for longer than she ever has. Walked Bo to school on her own (with me alongside, of course). Helped me clear and do dishes after dinner.

At this point, it felt like she had changed her strategy and was on her best behaviour so we would allow devices back.

So we talked about getting her Nintendo Switch back after the 4 weeks as a reward.

I made it clear that it will be only on weekends and for one hour only and she seemed happy with that.

We had a couple of family movie nights during the first week.  I noticed immediately when the movie started so did the vocal stimming. It was loud and really obvious after not having heard it for a few days.

Isla had to choose a movie that everyone else wants to watch rather than watching the same one over and over again. This caused a bit of distress.

Week 2

Isla comes and has a chat most mornings when she wakes up and isn’t rushing off and isolating herself with a device.

She still tries to turn on the TV most days and tries to run off with my phone.

By the end of the second week of term we are back into a busy schedule and Isla has managed to fire off some random texts.

She has also been found on the computer watching Captain Underpants when the cord has accidentally been left plugged in.

She thinks it is hilarious when she is caught!

I love how she is playing with her toys again but gets anxious downstairs alone.

Her love of books is growing. She falls asleep with books all around her.

By the end of the week is picking up and reading her Rainbow Magic chapter books herself which is encouraging to see.

It’s pretty constant making sure she has something to do and not getting into mischief but still definitely worth the extra work.

She is so much more interactive with people and in the world.

She is having way more sleep and there are moments when she just lays still…. just chilling out.

I love how she is so helpful in the kitchen and keeps up with the washing.

We are managing to keep to our exercise, writing and reader schedule.  It takes a little coercing but is a lot easier than battling with getting her off her iPad like we used to.

She is really enjoying visiting the library and choosing new books. Is so much less tired and enthusiastic to come on outings like visiting the supermarket.

One thing I have noticed is that when I brush her hair in the morning she does not scream out and cry like she used to.

Maybe this is because she is getting more sleep or maybe because her sensory system isn’t over stimulated.

Week 3-5

Life has got busy but having no devices have become our norm!!!

Books have replaced the iPad and Isla likes to shop for books rather than toys. She reads books on the toilet, reads books in bed and reads books while eating her breakfast.

Isla is especially keen on Captain Underpants Books and has moved on from the Magic Kingdom Fairy books (thank goodness).

She is picking up and reading books herself and I haven’t had to read to her much at all now.

Her CD player isn’t being used much at all apart from lullabies at night time since she discovered chapter books.

She still is trying to grab our devices at any opportunity.  We have to be vigilant!!!

Toys cover our living room floor.

She spends more time in the garden, jumps on the trampoline with her toys and plays with water.  It takes me back to when she was 3 years old before the iPad took over.

She is happier and less stimulated. Loves to chat. Is getting more sleep rather than pushing through tiredness.

She is more engaged and alert. Is more helpful and compliant.

Isla is still a busy girl who loves to touch and explore (and sometimes break) everything.

She would still like to sit in front of a screen all day long, if she had a chance but I am so amazed we have got this far. It feels a huge weight has been lifted.

The decision to get an Assistance Dog was a big one. Research showed that it would not only help Isla as a young person, but also give her more independence as she got older.

Bo, the loveable Labrador, graduated from his training and came to live with us in October 2016 when Isla was 7.

Some Background…

Isla is the youngest in a family of three girls.

She was a very cruisy baby, happy to be dragged along everywhere with her big sisters. She was smiley, content and easy to crack up into a fit of giggles.

Somewhere between 2 and 3 years old, although she was reaching certain milestones, such as walking, there were a few concerns around her lack of speech and not responding to her name.

Her easy-going nature was slowly replaced with hyperactivity and impulsivity.

At 3 years old we had received the diagnosis of both autism and a chromosome disorder 2q23.1 Microdeletion Syndrome (MAND). An epilepsy diagnosis was also to follow. To read more about our diagnosis go to https://www.simplyisla.com/a-diagnosis-and-a-little-background/

At 5 Isla was still unpredictable and also increasingly anxious.  She was a runner.  Taking her anywhere was a challenge.

To avoid losing her she was firmly held by the wrist as didn’t like her hand being held.

Going out also became too overwhelming, and she would say she just wanted to go home.

Her sensory system didn’t work as it should. Loud noises would cause her to cover her ears, rain would cause her to tremble and in busy environments she would shut down and go to sleep.

She would often throw tantrums that escalated quickly if she didn’t get her own way, if it wasn’t her turn or if she didn’t win. Sometimes she could be talked around quickly, other times it would result in her being stuck in a cycle of angst for many hours.

How does Bo help Isla?

We got Bo when Isla was 7.  The transition was seamless as Isla accepted everything about Bo.

Out & About

Up until recently when going out Isla wore a belt around her waist that was tethered to Bo. By being clipped to his coat if she tried to pull away, he would lie down and provide a 35kg anchor.

Over time, this has taught her that she is unable to take off and provides a focus for her to stay on track.

Going out became much less exhausting and we were able to walk longer distances. Isla could be independent to a degree without being held on to for dear life.

Now she is 10 she doesn’t always want to wear the waist belt but holds on to a handle clipped on to Bo’s coat. Occasionally if we are in a safe environment, she will lead him herself with me walking alongside.

Isla has got poor spatial awareness and doesn’t look where she is going. This gets worse when there is a lot going on around her.

She will walk straight into people, over people and through groups of people sitting down.

Holding on to Bo we are able to guide her to avoid collisions.

Sleep

Another immediate improvement was that Isla slept all night almost instantly with Bo at the end of her bed.

She went to sleep easily and STAYED ASLEEP all night. This was the first time after 7 years that we got a full nights sleep!

Alerting to an invisible disability 

Isla may look like a normal 10-year-old at times but autism can lead to frequent tantrums and unusual reactions to events which may look like she is a spoilt little girl.

Bo gives her a calm, secure pillow to lie with when she is overwhelmed with sensory overload and alerts others that all is not as it seems.

Isla also finds it calming running her fingers through his hair or touching the bony structures of his legs.

Bo has just become part of our family. When home he is your regular pet. He loves a game of fetch and, of course, pats and cuddles.

Isla has grown up so much in the last few years and loves Bo’s presence at home.

She likes to give him commands and I am hoping in a few years they will both be old enough to set out together and explore the world a bit further.

In this modern world it is relatively normal for people to share a lot about their lives on the internet.

Writing and sharing about our journey raising a child with special needs is no different.

I have always enjoyed writing but it wasn’t until our daughter was diagnosed, with a rare syndrome and autism, that I had a reason to.

It all started when I set up a Facebook Page called Simply Isla.

I did this to share pieces of interest about this new unexpected world of special needs.

This way Facebook friends who had an ongoing interest had the choice of following the page to learn more.

I initially started writing (or blogging) to report our progress when Isla got her assistance dog Bo.

Those who supported us during the process of fundraising for Bo were really interested to read how they were getting on.

I enjoyed writing so much that I continued and started to share more of our experiences.

I created the website www.simplyisla.com as a more accessible platform to help and educate others.

Blogging what I am learning along the way raising Isla has brought some unexpected benefits.

Is an outlet for me

Once I start writing it can be quite surprising what direction it takes.

I may start writing on a certain subject which then takes on a whole new meaning as I analyse what I am feeling.

By organising my thoughts on paper I find I feel less overwhelmed. It is very therapeutic.

I encourage everyone to write their feelings down. When you are struggling with something even if you have no intention to share.

It can really help bring some clarity.

Has been a help to others

Isla is a girl with a rare syndrome and autism.  Medical practitioners are unable to tell us what to expect next and this can make you feel very isolated and alone.

Our greatest resource as parents is reading about the experiences of others. Often we can relate or learn things from parents going through the same thing.

Sometimes someone may be able to put into words what we are feeling or explain things in a way that is easier to understand.

We can also use this information to share with other people to educate and create more understanding.

Parents often tell me that I have helped them by writing my posts and that is really heartwarming.

I learn a lot 

I always research when I write to make sure I have my facts correct.

By doing this I have actually learnt so much. Sometimes by reading more on a certain topic I have changed my opinion on what I previously believed.

It also has taught me the meaning of a lot of the terminology that is often used when describing the deficits that Isla has.

Education & Knowledge Creates Awareness & Acceptance

In this new age of increased tolerance of differences, it is a perfect time to educate others about those with disabilities.

I feel it is my duty as a mother to help this cause.

By speaking out I hope there will be more acceptance and opportunities created for our little people to integrate into society when they are adults.

However while it is exciting reaching people, sometimes I feel a little embarrassed meeting people face to face who have read my deepest thoughts and insecurities.

Creates a sense of community and support

A lot of people use Social Media as a place of support when going through a tough time. Or to celebrate events or to share experiences.

Whether it is right or wrong, real life or not, I cannot deny getting feedback is satisfying.

Having your feelings validated, progress celebrated and having conversations when feeling isolated makes me feel good.

Now Isla is older she loves to read peoples’ comments on her photos and it makes her feel special.

Have a purpose

Being unable to return to work in full capacity it is nice to feel like I have some sort of purpose. By writing I feel like I am using parts of my brain that haven’t been used for a while.

Being in this technological age is definitely a helpful time for special needs parents to make our world a bit smaller, get support and be supported. For that I am grateful.

Our eldest daughter has just finished school. She is neurotypical and has a bright, exciting future in front of her.

She is fortunate to be able to attend University this year. She will make new friends and have new experiences.

She is responsible, mature and independent.

Although we don’t know what the next few years will bring, we know she is on the right path to being an independent adult.

I wonder how it will feel when Isla, who has autism and a rare chromosome syndrome, leaves school.

In NZ if you are enrolled in a special school you can stay at school until 21.

Although Isla is only 10 and we have quite a few years ahead, I can’t help thinking about her future.

One of the biggest fears of a special needs parent is wondering if your child will ever have an independent life.

Will they ever be self sufficient without you?

This doesn’t come from a place where you think they will be a burden. You just worry how they will cope without you when you are no longer here.

Everyone needs a purpose and to feel valued.

Finding the correct path for a young adult with a disability after leaving school is going to be challenging I am sure.

We are already trying to think of business ideas we can embark on.

Something that Isla will be able to take part in so there will be something for her to do at this stage of her life.

The key is to find something that we both have an interest in. It would have to be financially viable without too much stress.

It is not surprising we haven’t come across the perfect idea yet!

For those with autism I can imagine the transition from school life will be hard to deal with.

Shifting from the routine, predictability and socialisation that school brings to one of isolation and having no direction will be tough.

Some parents say that there is a black hole when their child finishes their school years.

We can only hope when Isla reaches that age and stage there will something for her to do to give her a purpose.

Some comprehensive transition support available to guide us through. An increased acceptance of disability in society.

An opportunity she is keen to participate in. A group home available for her to lead a semi independent life.

We have many hopes for Isla.

When we are entering this time of her life we also hope we will be just as excited about her future years as we are about her big sister’s.

Watching Isla in a playpen with the toddler toys in the waiting room of a specialist’s office yesterday, it was clear she is a much younger child in a 9-year old’s body.

By shutting down and lying fully stretched in the middle of the waiting room, soothing herself by sucking her favourite finger, reminds me not only that she should have grown out of this habit of by now but also when she gets overwhelmed she has no regard for others.

By trying to constantly grab all the equipment during the appointment and not listening to instructions, Isla shows me when she is out of sync she cannot focus and needs to constantly explore to feel regulated.

After a great week of achievements this was a stark contrast and did give me a few pangs of despair!

This is the rollercoaster of a special needs parent.

One minute you are celebrating the small, but major achievements, and then it all comes crashing down.

We try to focus on the successes.

The easy transition of wearing new glasses and her look of amazement and wonder of being able to see a whole new world.

The willingness to do new therapy exercises each day to help with neuromotor immaturity.

The first birthday party without one meltdown and overcoming fears about the guest magician!

These are the things that we mostly live and are a constant source of heart-warming celebration.

The hard stuff we downplay as it can’t be changed.

Along with the highs and lows, there have been many unexpected outcomes from being a Special Needs Mum.

I love it has given me a purpose and a passion.

I love I can share knowledge and experiences to help and educate others.

I love the amazing connections I have made because of my child’s disorder in our local community and also online.

See my blog post A support group – a lifeline to the newly diagnosed parent.

I love that Isla has taught me about what really matters and has changed my priorities.

I now judge people by things such as kindness and encouragement, not by success and achievement.

I know it sounds cliché but Isla really does see the world differently.

This, in turn, makes me have a new appreciation of being in this world.

The hustle and bustle, human nature, qualities of people, unspoken communication, beauty of nature, the complexities of our brains.

The list goes on.

Isla has changed me, opened my eyes and helped me love unconditionally.

I thank her for that.

Being a special needs parent can be exhausting, lonely and scary but it is also amazing, hopeful, joyful and surprising.

It is parenting but just in a different way.