Nursery

Today I’m sat here writing this blog with a hot cup of coffee whilst Zachariah is at nursery for his third settling in session and to be honest I’m feeling rather excited about the whole thing.

I have some precious time to just be me and reflect.

All those things I thought I would experience when leaving him at nursery are pretty much non-existent.

Instead of feeling guilty about leaving him I am feeling excited to hear about his day and see what fun he has participated in.

Instead of feeling worried I am feeling complete peace over it all, I have nothing but warm, positive vibes when I drop him off at nursery, it is such a wonderful place with lots of passionate staff.

Instead of wondering what I will do with my time and watching the clock to pick him up I am embracing the time out and enjoying things I love to do, yes I know I’m sat here writing about Zachariah, but we can’t forget about him completely hey!

Overall I have felt very proud of my son, and his achievements.

He has had no trouble at all settling in and appears to be loving the atmosphere.

Already he is making new friends and sharing his beautiful, contagious smile with everyone around him.

I have felt proud dropping off and picking him up, it feels so good to be part of such a usual, everyday routine.

By this I mean that hospital visits, therapy sessions and testing have been our norm for the past two years, but now we are involved in something that the rest of the world is involved in and it feels so good!

Sending Zachariah to nursery has definitely been one of the best decisions Tim and I have made, it’s a decision that has proved to be positive and beneficial for us all, especially Zachariah.

I now look forward to watching Zachariah blossom, learn new skills and bring home lots of pictures that I can stick up on the fridge!

I look forward to photo day, joining in dressing up days and parent evenings.

And I look forward to witnessing what Zachariah teaches the other children and staff at the nursery, and seeing how he too can be an educator.

The small things and the big things will all be celebrated!

How Blogging Has Changed My Life

I’ve always struggled with spelling and grammar, plus I’ve always found it hard to get down on paper what I really want to say.

Because of this I have avoided blogging for a long time, I have ignored the nudges to start putting my feelings onto paper and doubted that I have something worth saying.

Who wants to hear about my life?

How can I make my life sound interesting?

How do I put on paper what I really mean?

How honest should I be?

These are all the barriers I was fighting against.

And then I starting reading the firefly blogs. I enjoyed hearing about other families like mine, and soon understood that everyone has something to say, and everyone has something that can move somebody else.

I was touched by the other families’ journeys so I was sure I could touch others too.

I wanted to bring honesty, and yet positivity.

I wanted to show Zachariah in his true light, and show the world that he may have an underdeveloped brain but he has a joyful life!

And I wanted to prove that in every struggle, each bad day and dark cloud there is a blessing to be thankful for.

Once it was all approved, I started writing! From the very start I felt this huge sigh of relief, I felt barriers knocking down and had a huge peace about it all. I was now an open book and people were about to jump on the ride and follow my journey as Zachariah’s Mummy.

Blogging has changed my life for a number of reasons.

The first being that it has given me such pleasure to hear that I have helped someone because of what I have written.

I have had messages to thank me for being honest and open as they really needed to hear what I had said. Being honest about the way I’m feeling and hearing that someone else has had similar feelings makes you feel less alien and less lonely.

I have had people contact me for a further discussions on particular topics, and let’s not forget the fact that I have made some new friends along the way! This alone is just marvellous!

I have had the pleasure of meeting a mummy and her son which has been such a blessing. Introducing our sons was beautiful as they both connected so quickly and us Mummies found such warmth from our new found friendship.

Secondly it has been therapeutic.

Seeing my feelings and thoughts on the laptop screen have helped in the process of understanding myself, and helping me through hard times along the way.

It’s given me perspective and time to focus on what is important in life.

Lastly, blogging has helped me show my son to the world and led us into a new world full of amazing families just like us! I thank Zachariah for this new adventure!

Music and Movement for Children and Adults with Special Needs!

When she unexpectedly gained better seizure control, I wanted to help her build up her atrophied muscles and what better way to do that than through music and movement activities!

In my research, I discovered that music, movement, and creative self-expression can greatly enrich the lives of children and adults with autism and other developmental disabilities in more ways than one!

Combining music with movement doesn’t just get the body moving!

It engages several areas of the brain and benefits people with disabilities in other great ways as well.

A recent study indicates that participating in musical experiences can have a favorable impact on speech and communication skills and in the social, emotional, behavioral, and motor development of children on the autism spectrum as well as children with other developmental disabilities (Srinivasan and Bhat, p.5, 15).

Participating in musical and movement programs with others could be a small step in the right direction for improving the social, emotional, and physical well-being of children and adults with developmental disabilities.

Music and movement activities offer participants the opportunity to practice speech and communication skills, make eye contact with others, and socialize.

But perhaps most importantly they foster the development of real and meaningful friendships as participants begin to recognize and look forward to seeing each other on a regular basis!

Rhythm Instruments activities which includes clapping, marching, and walking to music, promote muscle and motor coordination and assists in the development of gross and fine motor skills. Synchronous movements during our rhythm activities may also help participants to feel a sense of belonging to the group (Srinivasan and Bhat, p. 9, 12).

A study conducted by Phyllis Weikert suggests that the ability to keep a beat is also linked to language development and encourages cross lateral movement which in turn causes the brain to cross the mid-section, a skill necessary for learning to read and write (Harman).

Musical Scarf dance routines promote creative movement and healthy self-expression, boost self-esteem and self-confidence, promote emotional understanding, and encourage cross lateral movement as well.

Bean bag activities promote gross motor movement and muscle strengthening.

Opportunities for practicing social skills, social interaction, and turn taking are also presented. Again as an added bonus they also encourage the brain to cross the mid-section by implementing cross lateral movements.

A few of the possible positive effects of participating in any music and movement program could be:

• An increased attention span
• A decrease in self stimulatory behaviors
• Improved cognitive functioning
• An increase in socialization
• An improved behavior and mood
• An increase in self-expression
• Improved auditory processing
• An improvement in fine and gross motor ability
• A boost in self-esteem and self-confidence
• An improvement in language and communication skills
• A decrease in anxiety
• An improvement in muscle strength
• Improved academic functioning (American Music Therapy Association)
• Increased eye contact

I am not a physician, nor am I a licensed therapist. I make no claims that participating in any music and movement program will cure participants of any disability, illness, or obesity.

Work Cited:

Harman M.A., Maryann;   Music and Movement- Instrumental in Language Development

Srinivasan, SM and Bhat, AN; pp.5, 9, 12, 15   A Review of Music and Movement Therapies for Children with Autism: Embodied Intervention for Multi-system Development

Taking time for Me!

You know, like reading a book leisurely, doing my favourite hobbies, taking a swim (without the kids!), going to the hairdressers or beauty salon, or even going out with my husband.

I’m not saying this in some ‘look at me, I’m so selfless’ kind of way.

I’m saying it truthfully, somewhat regretfully.

I KNOW that I need to do more things for ‘me’ but life kind of gets in the way. The busy, day-in, day-out, there-are-only-so-many-hours-in-the-day balancing act that we all do.

Not only is life with kids busy, once you add a child with complex needs you take it up another notch…

I am a carer. I nurture and care for my four beautiful girls, I look after my husband and our household, and my background is nursing (which essentially is a ‘caring profession’).

I do LOVE CARING. I wouldn’t want to do anything else.

But caring can be exhausting.

So recently when I was feeling a little overwhelmed and stressed, I had a long introspective look at myself. I asked myself “how can I be a good mum, a good wife, a good nurse, if I don’t take care of myself first?”

I am finding my way at purposefully taking time for ME. With my girls at school now a good chunk of the morning and afternoon, I have a lot more time on my hands and am determined to do all those things for myself that I’ve been putting off for years. Just doing things I enjoy and that will make me emotionally and mentally happier and healthier.

I’m also juggling a back to practice course and hoping to find a part-time nursing job that will get me out of the house and mingling with people, doing something I love. I’m doing this for ME.

It’s SO important to take time for yourself! We all desperately NEED time to de-stress and do things for ourselves that bring joy, relaxation and fulfilment.

My top suggestions for, ‘ME’, time:

– have a SPA day, or mani/pedicure

– get a massage

– trip to the hairdressers

– spend an hour reading a book in peace

– spend time doing your favourite hobby

– go on a shopping trip (for new clothes, make-up etc. NO kid/food items!)

– go for a walk somewhere beautiful to think and destress (and grab a coffee!)

Not only will we feel better, but we will be better equipped to look after our children and families

Living Outside of the Bubble

I often wish I could insulate my medically-complex daughter in an imaginary ‘safe bubble’, sheltered from everyday microorganisms and harm.

But it’s simply wishful thinking that I can protect her like this.

Unless you’re the ‘bubble boy’, or suffer from severe combined immunodeficiency (a genetic disorder which results in an extreme vulnerability to infectious diseases) and require specialized intensive protection from pathogens.

My five year old has chronic lung disease and asthma resulting from her extreme prematurity.

I do not even know off hand how many times she has been hospitalized with a chest infection.

But off she goes to school every morning just like her big sisters.

She LOVES school! I couldn’t deprive her of that time and independence. But boy do I hate all the bugs she picks up…

She wasn’t even back a week at school this term and her teacher called me to say there was a cold going round and I should take Brielle home early.

Low and behold she didn’t escape it, and was coughing and on nebulisers and increased steroids for the following week.

The fact is, she is in school five hours a day, five days a week with a classroom of other children and staff.

There are a multitude of bugs on the floors, the counter tops, door handles, play equipment and EVERYONE’S hands.

And she depends on people’s hands SO MUCH as she cannot walk without the assistance of a hand, and receives information and communication through touch and tactile sign language.

So she is relying on other’s hands being kept clean too for her own health.

As a mom, and a nurse, I recognise the fine line between letting her build up immunity by being exposed to germs daily, and protecting her health from infectious disease.

I am somewhat of a fanatic on hand cleanliness!

Really, it is one of the best ways you can protect your health and prevent infection!

So Brielle gets her hands washed very often, and thankfully just loves playing with soap and water. It’s very sensory

And I will continue to keep her home from or off the bus if I have my doubts about a bug going around.

I find close communication with the teacher and her assistant essential to let them know her vulnerabilities.

That’s all I can do- she can’t live in a bubble!

Autism: Why I Describe My Daughter as a Coke Bottle!

I say reaction and not action because it occurs when something has happened that triggers a response that he or she has no choice over, making it an unconscious reaction.

An action is something that is a choice.

My daughter Lola doesn’t choose to behave this way.

Sometimes it’s impossible to know!

Other times I can see it from a mile off.

Just from little behaviours, the way she acts, or the way she talks. Sometimes with just a glimmer in her eyes.

There are lots and lots of things that trigger these reactions from Lola. And sometimes it can be over the smallest of things,

I don’t know wether you’ve heard of the coke bottle analogy but here goes.

(I once described this analogy to a teacher to help them understand why Lola behaved like she did at pick up time when I got there.)

Imagine I have a bottle of coke.

Lola wakes up in the morning and instantly there are demands placed on her to get ready for school – getting dressed and washed, going downstairs.

The clothes she’s wearing feel uncomfortable.

Tags and seams are either too long or too short (they are neither in my opinion but to her they have to be just “Lola” right!)

Remember that Coke bottle you’re holding? Shake it a little bit.

It’s time for shoes and coats on now, where did we leave them yesterday?

We have to find them, we’re going to be late otherwise.

Getting into the car now and putting her belt on, she’s being restricted, the seat belt hurts.

Again shake the bottle a little bit.

We’re getting out of the car, walking to the school, there are people everywhere.

Where should she look? Who’s talking to her? Calling her name? Where’s it coming from?

Oh mind that curb, Lola don’t go into the road “Say hello Lola”, going to class where there are 30 children running around, excitedly, the teacher yelling, this way no that way, coats up, sit on the carpet.

Chairs are scraping, lights are whirring, lots of decorations everywhere.

30 bodies moving simultaneously.

It hurts.

Shake. Shake. Shake.

Starting work now.

She doesn’t understand, she can’t communicate this, so she does something else, gets told off, for disrupting, or wandering aimlessly.

Shake it some more.

Break time, she’s thrown to the wolves – again lots of sensory overload, lots of bodies moving everywhere.

Go and play Lola!

Play with what? I have no imagination!

Play with who? I have no friends! The smell in the dining room makes me feel sick.

Shake. Shake. Shake.

Do your work Lola!

More work time? I’m tired, I’m hot, I’m hungry, I’m thirsty, it’s too loud, it’s too bright, it’s too busy.

I DONT UNDERTSTAND, I need to move, I need to fidget, I need something to chew on…

Oh here I’ll just unstick this page and eat the blu tac.

Shake that bottle harder.

Go to Assembly Lola!

It’s assembly time now you’re making me sit down. I can’t sit still, I can’t be quiet for that length of time and it’s all just too much. 

>Fidget, fidget, grunt, grunt, growl, growl<

Kids are whispering, teachers are tutting.

I copy them because it sounds good. I’m asked to leave. Why is everyone staring at me?

Keep shaking that bottle

It’s home time now Lola, put your coat on and get your bags!

It’s crazy in the cloakroom. 

Where’s my stuff I’m sure it was here…

Arghhhh!

>Bump, trip, stumble, bang<

Shake. Shake. Shake.

DO YOU WANT TO OPEN THAT BOTTLE?

Nope I didn’t think so.

But I have to find a way to open that bottle slowly to release the fizz because if I don’t, well the consquences are a nightmare.

Sometimes I’m not quick enough and it just can’t stay closed any more.

It just goes pop bang and fizzes everywhere.

Sometimes it’s when we get home, other times it’s in the car on the way home but sometimes it’s as soon as Lola comes out of the classroom.

(At that point I am usually met with comments such as, “Well she doesn’t behave like that here” or “She’s been good as gold all day, Lola why are you behaving like this now?”)

It’s like the straw that broke the camels back.

She has been holding it all in all day and then I pick her up and ask her to put her belt on and all hell breaks loose.

I have learnt to not talk to her much at pick up time, even when she asks me questions I side step them so as to avoid the inevitable confrontation.

It can be about anything.

Even something that wouldn’t normally bother her can trigger one of these reactions.

I have to be so careful when I collect her from school and if she’s is in a flighty mood I need to make sure I move swiftly to the car.

Stanley, her brother comes out of Lola’s classroom with her so I can grab them and remove them from the playground as quickly as I possibly can to avoid a meltdown.

The last time it happened Lola was hysterical, on the floor, banging her head on the concrete screaming her head off it was heartbreaking.

The bottle exploded!

I want to avoid that again at all costs.

Exercise – Vital for the Child with Autism, and his Mom

Picture the scene: a frazzled mother with her head in her hands, and a child desperate to focus, while trying to sit still long enough to learn to multiply fractions.

The mother sees laundry piling up around her, dishes in the sink, and feels her patience fading as she tries to help the child remain on task.

The child is frustrated; feeling misunderstood.

It’s not his fault that he has oodles of excess energy to burn.  The mother is tired and feels like she is drowning as the day is growing shorter, and there are numerous lessons remaining to finish.

This scenario is a typical homeschool day at our house.

Or, at least it has been until we discovered a magical component that had been missing from our routine.  EXERCISE!!

Mothers of children with special needs experience stress that can be compared to PTSD.

When you have two children with special needs (one with multiple disabilities), some days the stress is absolutely crushing.

It’s hard to breathe.

“How will we make it through the day?”

“How will we accomplish all the tasks before us today?”

For the longest time, I simply loaded myself up with strong coffee and started each day with a less than positive attitude, complaining when things didn’t go as planned.

We possess a gym membership, but for a long time, it had gone unused.  “Who has time for that?” was always my excuse.

When my mother decided to start working out and to put her health first, we thought it would be a good idea to join her, in support.

Soon I realized that spending time with my dear mother, chatting as we burned calories on the elliptical machine, was promoting a sense of well-being in my life that I greatly needed.

While we worked out, my son ran on a treadmill and rode a stationary bicycle next to us.

He loved being active and felt a sense of calmness as the endorphins started kicking in.

Quickly we realized that when we started our day with exercise, it set a positive tone.

We finished school work faster, and with phenomenally better attitudes.

The energy breaks needed throughout the day were lessened.

I even had the energy and the mindset to get my work around the house knocked out.

We were HAPPIER!!

On some days, my son and I skip the gym and we go for therapeutic walks outside. We discuss his favorite topic, video games, as we walk.

This allows us to begin our day without stress and with our minds fully relaxed.

Why didn’t we try this sooner? I’m overjoyed that we spend much less time arguing over schedules and school assignments now.

I don’t feel like I’m drowning anymore. Life will never be easy, but we’ve found our way to better mental and physical health.

When you have those two key elements on your side, the challenges you face become easier to tackle.

Reading My Son’s Eyes

Will I ever sleep again?

Will I know how to react if my son is unwell?

Will my built in feeding devices ever stop leaking?

But, ‘Will my child ever talk?’ was not one of them.

My first son did talk, from a very young age he had a severe case of verbal diarrhoea (but it was pretty adorable).
When I fell pregnant again it never crossed my mind that it would be different this time.

Then during my twenty week scan abnormalities were found on our baby’s brain. We were told that our unborn child would have learning difficulties of some degree, probably Down’s Syndrome, but without invasive testing they couldn’t tell us anymore.

I knew the risks of those tests and whatever answers they would give would change nothing.

So instead we started on our unknown path.

Now even at this point it never occurred to me that I wouldn’t get to hear my child’s voice or that I would learn a whole new way of talking.

At eight months old my son called from his cot “mama”.

We all know the feeling when we get that first word. It’s beautiful.

But I didn’t know then that it would be years before I heard that again.

My son is nine years old now and recently we have been blessed with the words “mama ” “dada ” and even the word “no” (oh I love that one).

At times I’ve felt overwhelmed by the thought that my son may not get to make a phone call, sing along to a song, shout at me or call our family dog. And how cruel it seems to have that taken away from him.

I look at him and he smiles, moving his hands into the few words that he’s learnt.

My son with no voice has taught me whole new ways to speak.

His hands making signs, him guiding me to the thing that he wants.

He lifts his hand and moves my face to look at him, into his beautiful eyes.

I can read his eyes now, I can see his desires and needs, I witness his joy and feel his pain.

Sometimes I lose my beautiful son behind those big blue eyes but my eyes search his, eagerly waiting for his return.

It’s not about what we don’t have!

It’s about the magic and the strength of a little boy who found us a new way.

The Wonders of CBD Oil

After years of raising two children with special needs, I find myself asking, “Why the heck are they so easy to prescribe to children?”

For several years, my son was on medications of this type for ADHD and Anxiety symptoms.  These drugs bring with them many unpleasant side effects and unknown long-term effects.

Looking back, I wish I would have researched more and found an alternative sooner to these harsh drugs.  When a doctor tells you that your child needs medication, you look to them as the expert and you want to trust in their plan.

An idea hit me like a ton of bricks this year, when a doctor emphasized to me that my son’s dose of stimulant ADHD meds needed to be increased.  Hearing that he needed to begin taking a second daily dose of these drugs made me finally see the light.

There had to be another way.

As a mother on a mission, I began reading everything I could find on alternative treatments for severe ADHD and Anxiety.

Essential oils, nutrition, acupuncture and Chinese herbs all came across my screen as I researched.

As I had been looking into CBD Oil (Cannabidiol, derived from hemp from the Cannabis plant) for my daughter with Epilepsy, I found numerous articles on the benefits it was proving with ADHD and Anxiety.

I was intrigued…could this really work?

After more research (A LOT MORE), we gave it a go.

Now, six months into our journey with CBD oil, we have experienced incredibly positive, measurable results.

Immediately, I watched my son’s appetite return…with a vengeance!

We dropped the ADHD meds and suddenly, his stomachaches went away; he told us right away that he felt BETTER.

This was reason enough to keep this new found treatment going.

He began sleeping well at night…this happily led to another medication being dropped!

His heart no longer felt as if it were beating out of his chest.

As months went by, we continued seeing improvements.

A child that could not walk outside without earplugs in his ears for fear of bees, was now running in the yard, fearlessly!

His grades in Math greatly improved.  He could sit and work through an on-line homeschool Math lesson by himself, absorb the material, and then ace the exam.

All of these wonderful benefits proved we were taking steps, FINALLY, in the right direction.

Recently, we went for a check-up with one of my son’s doctors.

To our sheer amazement, he had jumped in both the weight and height percentile categories, by 25%!

If we had any doubt that the money we were spending on this treatment was completely worth it, those statistics sealed the deal for us.

CBD oil is completely legal to purchase in the US, but doctors can’t yet prescribe it…Insurance will not cover it.

The cost is 100% out of pocket for the consumer.

As budgets are stretched past their limits already for many special needs parents, hopefully someday this will change.

For us, the oil has been more effective than any prescription medications, and without any side effects.

To continue seeing its benefits, and to have a happier, healthier, well-adjusted child – we’ll continue to use it.

It is a vital treatment for him and it is so very well worth it to us.  We only wish we would have learned about the wonders of CBD oil and had access to it years earlier.