Skinny Peanut Butter Brownies

INGREDIENTS:

170g low fat or fat free natural Greek yogurt

60ml skimmed or almond milk

2 egg whites

1tsp baking powder

40g unsweetened cocoa powder

40g old fashioned rolled oats

180g peanut butter (mix the jar before you measure this out)

Sweetener – pick ONE of the following options:

200g granulated sugar

½ cup honey

85g brown sugar & 1/4 cup honey

85g granulated sugar & 80g dates

Preheat oven to 180c

Grease and line an 8” brownie tin

METHOD:

Place all ingredients except the peanut butter into a blender or food processor

Blend until mixture is smooth and oats are ground well.

Pour batter into brownie tin

Microwave peanut butter for approx. 30 seconds

Drop spoonfuls of melted peanut butter onto the batter & use a knife to swirl gently to create a marbled effect

Bake for 20-25 mins or until the brownies start to pull away from the sides of the tin

Wait until completely cool before removing from tin, ideally refrigerate for an hour before removing from tin.

If you want an extra special treat these can be eaten hot straight from the oven!

These will stay fresh at room temperature for 2 days and up to 5 days in the fridge. These freeze well for 2-3 months

Special Needs Parenting: It’s The Law

I was hesitant about my husband going away.

Why?

Because our younger daughter, Miss Z, is the master of, “Whatever can go wrong, will go wrong”, – and usually at the worst possible time.

Let me give you an example.

Earlier this year, my husband wanted to travel to the UK for 10 days.

The girls and I would stay at home.

I encouraged him to go, saying, “We’ll be fine… just so long as Miss Z doesn’t end up in the hospital.”

(Followed by a chuckle, because Miss Z was fine when I said it).

I’m sure you know what happened next.

My husband flew out to the UK on Thursday afternoon and by Saturday I was calling an ambulance for Miss Z.

She ended up spending 7 out of the 10 days he was away in the hospital.

Generally, Miss Z is slightly subtler in demonstrating her, “law”. I’m usually faced with things such as seizures just as the school bus arrives or coughing fits when we walk into the library.

If we’re planning a big outing with Miss Z, she’ll be happy and healthy the two days before, only to wake up in a foul mood, constantly crying and probably running a temperature on the day that matters.

I can give her anti-constipation medication for days, but it will only kick in when she’s in the pool for hydrotherapy.

This is also the girl who gives everyone big, silly grins until you pull out a phone or camera – and then she’ll scowl like no one’s business.

Whereas Murphy’s law incorporates an element of hope – sure if something can go wrong, it will, but you can do something to prevent it going wrong, right? – Miss Z’s law is heavy with inevitability.

No matter what you do or how prepared you are, it will still go wrong when you least expect it.

So, on that morning when I need everything to run like clockwork in order to get one child to school, one child to an appointment and me to somewhere else, I can plan and prepare the night before all I want, set everything out so we only have to get dressed and walk out the door – Miss Z is still probably going to throw a spanner in the works!

Z’s law makes me superstitious.

After all, she has a history of developing issues shortly after I proclaim to a doctor that she has never had that issue.

So now, I do a lot of knocking on wood, crossing my fingers and prefacing sentences with, “I hope it’s not bad luck to say…”.

Here’s how a typical conversation with the neurologist goes:

Neurologist: How have Miss Z’s seizures been?

Me: Well, her seizures seem to have decreased (knocks on wood).

Neurologist: How has she responded to the new medication?

Me: So far she has responded well – she hasn’t shown any side effects.

Since I’m most superstitious about seizures, Miss Z’s neurology appointments sound like a hungry woodpecker is in the room.

Based on the fact our neurologist doesn’t seem to find this unusual, I suspect I’m not the only parent with this type of superstition.

Z’s law isn’t all bad though.

Like Murphy’s and Sod’s laws, it can be really effective at making me laugh at the situation – and myself.

It is also a reminder that things go wrong and yet we still survive.

Missing the bus, interrupting the library with loud coughing, frowning at the camera – this has all happened before and will happen again, but we’ll go on.

Because that is the second part of Z’s law – if something can go wrong, it probably will, but we’ll survive it and laugh about it… eventually.

Miracles

A miracle is something that happens against the odds, it’s something that cannot be understood, and it’s something we read about in the Bible, where there are lots of what appear to be, impossible events.

For me, miracles are a little bit closer to home.

Miracles happen against all the odds, but also happen when the odds are for them. Miracles happen against all the negativity, but also within positivity.

Miracles bring us joy, love, and something we couldn’t quite picture but once we see that miracle everything falls into place.

Miracles are to be treasured, appreciated and remembered for what or who they are.

When I picture a miracle I picture Zachariah, my nieces, my friends’ children and all the children around the world.

Children who are all so unique, perfect and wonderfully made.

Last year, a very close friend of mine said goodbye to her little miracle, a miracle who fought so hard, fought so brave.

A miracle who spent a very short time with her mummy, daddy and brother giving such precious gifts of love, joy, hope and peace.

Now, although their miracle may not have appeared to be what we all expected and hoped for, their miracle was still a miracle, and still the most perfect gift from God.

As I was grieving and asking God why, I found myself wondering why Zachariah had lived longer than Doctors had said, I found myself wondering why my friend’s baby girl could not have been given longer.

As I comforted my friend I felt guilt, guilt that brought so much pain and confusion, as I couldn’t explain why we had to say goodbye to such a perfect miracle so soon.

During the pregnancy we had spoken about the services that will help my friend’s family, we had discussed how I could help find the best equipment for this precious baby girl, we had this huge hope that she would live long enough for all our plans to fall into place.

Despite all this, there was a bigger plan that we could not comprehend, this miracle was taking a path that we had no control over, and what an amazing miracle she was.

Miracles have a way of taking us by surprise, they are not always what we expect them to be, but I truly believe that every child created is a miracle and they should all be appreciated in such way.

Beautiful. Perfect. Wonderfully made.

To all of you who ask why, just like I did, look at your children as unique miracles who are so magnificent in every way.

However long you are given with your miracles, treasure it and remember them for what they brought to your lives.

Although I didn’t meet my friend’s baby girl, I have been blessed by her life and left amazed by her strength and beauty.

Enjoy your time with your miracles and learn from them, as I believe every miracle has a gift to be received.

In memory of Matilda Rose x

7 Signs of Caregiver Burnout as a Special Needs Parent

A mom is a mom and caring for their child is in the job description.

I agree, of course, but caring for a child with severe autism is so much more. It’s an up all night, never sit down, zero to life journey.

I have 2 children. Cooper, my first born, is loving, caring, funny and was diagnosed with autism at age 3.

He is now 6 and his autism falls on the severe end meaning he is nonverbal with severe sensory issues and no self-care. This includes being potty trained.

There are days where I feel less like a mother and more like a personal care attendant.

I have entered uncharted territory with my special needs son.

I just put him on the bus. And by that I mean I physically handed his flailing, screaming body to the bus aide.

I am covered in sweat. I can feel the fresh bruises on my thighs. The pinch marks are visible on my upper arms. My face is beat red. My lip is fat from a swift head butt.

I smiled to his bus driver as he said, ‘tough morning?’ It took everything I could do to smile and nod and mutter, ‘you could say that.’

He gave me that look. Any parent that has been in the midst of an autism meltdown knows the look. It feels like pity. Typically it comes from a good place, but it still hurts.

I was embarrassed enough already. I felt disheveled and unsettled.

I was the mother to this little boy and I should be able to handle all that he can throw at me.

I mean….he is only six. But he is also nearing 65 pounds. He is strong. He is healthy. He is in way better shape than I am.

The second I turned to walk towards the house I burst into tears. I was able to choke them back long enough to turnaround and wave to my son.

Just like I do every single morning.

He needs to see my smile. He needs to know that mommy isn’t rattled. He needs to know that mommy is fine.

Except, just like the day before, I wasn’t fine. I was hurt and exhausted and confused.

As I waved I couldn’t help but think, ‘Why me?’ My hands were still shaking.

I knew I should hurry up and leave for work. I was already late. But I was rattled and crying and I looked terrible. I needed to quickly reapply my makeup but first I had to stop crying.

I refill my coffee cup for the 4th time that morning and take a quick peek in the mirror.

I didn’t even recognize myself. Bloodshot eyes with huge bags underneath.

My skin was pale. I see bruises on my upper arms. My roots are grown out not to mention greasy. I can’t shower when I am alone with my son.

He needs constant supervision.

I let myself go down the rabbit hole of feelings that accompany raising a child with severe autism.

The self-pity. The ‘why me’s’. The ‘this isn’t fairs.’ The ‘I can’t do this for the rest of my life.’

Let’s be clear here…I love my son more than I can put into words. He is my life. He is my purpose. He is my joy.

But, his care is sometimes more stressful than I know how to handle. We are entering a new world. He is getting older. He is getting bigger. And I am still the same size.

Caring for an upset and inconsolable infant is one thing. Caring for an upset 60 pound 6 year old amidst of an autism meltdown is different.

I am not scared of Coop yet. But I can see a glimpse into the future. Little boys turn into teens that turn into men.

I have heard of caregiver burnout and if you search the term you will see a theme. The term refers typically to caregivers that care for adults.

Caring for my son with severe special needs is a 24 hour a day job.

I also work full time. And yes, you could say he is in school for 8 hours a day. Well, much of my day is spent making phone calls, replying to emails and doing the business side of autism.

On top of that I am sick all the time. I catch every bug that goes around. I never feel rested. I never have a break. Even if I go out with friends or take a break I feel out of place. Or guilty.

Do you ever feel that way?

Here is a list of signs of Caregiver Burnout for Parents. If you are experiencing any of these you need to try and take a break. Find respite care. Call a friend or a family member to help.

Caregiver burnout is dangerous for you and your family.

1. Your emotions are like a roller coaster. Daily you experience a wide variety of emotions. You feel furious one minute, sad and helpless the next.

2. You are always sick and rundown. You can’t figure out why you catch every bug that is going around.

3. You consistently cancel or don’t make plans with anyone. If you do go you feel out of place or can’t turn off the worries about your child. No one can care for them as good as you can.

4. You know you should have hobbies, but you just don’t have the time. Frankly at this point you don’t even know what you like anymore. You struggle to self-identify.

5. Even though you are married you’re the go-to caregiver. Always. Your spouse helps of course but the sole responsibility falls on you. You have no babysitters. You have no respite.

6. Your self-care has gone downhill drastically. You joke about not having time to go to the doctor or dentist. How could you fit it in…what would you do with your child during the appointment.

7. You struggle to sleep, relax, or rest. Your mind is constantly on the child you care for.

Special Needs Parenting: The Perfect Potion

First, grab a partner, the opposite sex to you or the same sex, heck I don’t care, but you really could use two (or a team!) to help, support and guide you through this journey, ‘cos it ain’t plain sailing… but there is many a calm, peaceful sea ahead of you too, you may just have to look that little bit harder to see it.

I know there are many who do it all alone – you my darlings, are what I call HEROES.

Secondly the, ‘fun’, part… wham bam thank you ma’am… or fill out a heap of papers go through countless hoops and adopt your beautiful baby/child!

Nine months later you have a baby (this may vary depending on personal circumstances)

A few months after that or years after that you hear the words, ‘extra needs’,‘special needs’,‘additional supports’ etc.

This is not what either of you had planned – you’ll soon discover, life in general is often not what you’d planned, for absolutely everyone, not just you!

Why are doctors talking in letters at you?! OT , SLT, PT, ABA, ADHD…

Don’t fret, I have figured out some ingredients you will need and the method you will need in order to decode, kick-ass and smile all through your particular journey of parenthood, ’cos we all know; it takes a village to raise any child really!

Saddle up!

Prep:

Ummhhh.. well, at least 9 months – but this can vary depending on when your doctor starts talking to you about conditions, testing, gene testing, blood work etc…

Cook : Ummhhh… I guess, if I’m honest: ongoing.

Ingredients :- We aren’t talking grams, or tablespoons here, it’s got to be buckets!

Bucket loads of PATIENCE

Buckets can be halved or even quartered when your child redesigned the walls, floors and bedding with their own special shade of brown (wink, wink!)

*Do not, I repeat, DO NOT use all your buckets on this, you will need the rest (and probably have to borrow some from your friends) when dealing with schools, nurses, doctors, pharmacists, the general public and idiots which we all meet daily.

Bucket loads of ARROGANCE

Oh I know how that sounds, but come on YOU know your child better than anyone else and YOU are more than qualified to make decisions regarding their care, medications, education and their needs.

OWN IT!

Bucket loads of DETERMINATION

You will suddenly NOT take no for an answer when looking for supports (what ever they may be) for your child.

You will always get up again, more determined each time.

As Chumbawamba ( yep I am that old ) have so, ‘eloquently sang’ – “I Get knocked down, but I get up again,” – it’s not the classiest of anthems but it gets right to the point, eh?!

Bucket loads of KNOWLEDGE

Bare with me here, you are Fionn and your child is the Salmon of knowledge.

YOU know all about your child’s condition without a degree.

Well done you eh?!

Bucket loads of, “I DON’T CARE!”

You will say this over and over and over and over and over… there comes a point when you will just feel exasperated.

This may apply to friends, relatives, teachers, SNA’s, pharmacists, doctors, nurses, supports, services and even personal hygiene (sorry to burst that bubble, newbies).

Bucket loads of COULDN’T CARE LESS.

You will see the looks, you will hear the whispers.

You’ll smile in response to that level of ignorance or you’ll act really inappropriately (I try, to do the second, as often as I can.)

You will, however, feel so liberated by not caring as to what people think of you or your child. That my dear, is perspective working it’s magic on you all the time.

Bucket loads of all those lovely things that make us all human, EMPATHY, COMPASSION, UNDERSTANDING, CARING, NURTURING

We all have access to these ingredients in an instant, especially if we see pretty much anyone struggling.

We are those parents who approach you and ask if you need a hand – yep, that’s us – we think nothing of picking up your bags as your child ran off despite you pleading with them to wait.

We just get it.

We’ve no idea if your child has any sort of extra needs, but we see a parent who needs an extra hand and in that second we will offer it, I like to think most people would do the same.

Trust me, if your kid kicks you and you get embarrassed we are secretly thinking, ‘Good block, Mammy!’ or, ‘ Wow, he’s got great balance with one leg!’

We do our best not to judge, especially parents, as we have been there and been judged far too often.

Bucket loads of HUMOUR

You will laugh at stuff you shouldn’t laugh at and that is OK, we all do it .

Yes, yes.. quiet down there PC club, let me explain our ‘club’ and it ain’t PC it’s more like PI (politically incorrect!)

When you’re with parents like me we will laugh our assess off at each other’s stories, we will ‘one-up’ each other with stories that would make the average parent cry, weep or vomit or just be thankful that they don’t live our lives.

This is fine but… (there’s always a but.)

If you’re not in our club and you try it, we will give you a five minute head start – run!

We are fiercely protective of our babies and our club, for that matter.

Bucket loads of PERSPECTIVE

Perspective can sneak up on you.

You don’t even know you have a different perspective until the mundane life worries really go above your head.

You are too busy taping your child laughing, or walking, or talking.

You learn life is made up of moments, not of what you own or what car you drive or where you went on holiday.

But moments and if you’re lucky enough, you’ll have your child/children with you throughout your life to make many more.

And finally, Bucket loads of ABSOLUTE PURE LOVE

All parents have this for their children… but with parents like us, this is what drives us to advocate, to speak up about inequalities within our communities, to want to change the world for our kiddies, to want our kiddies to be accepted and cherished within our communities.

It’s basically all the things any parent would want for their children, except most don’t have to fight for it, we do and we will continue to fight for our kiddies…

Method:-

Over time throw all these buckets into your soul. Mix until there are enough worry lines, grey hairs and of course laughter lines – then leave to mature (hopefully a very long time) and voila!

You are an overworked, under appreciated, extremely tired, advocate, parent, carer for your child with extra needs.

The most amazing thing? You would not swap your child for the world but you’d change the world for your child.

The only real ingredient you need is love and to know that every single one of us, as soon as we hold our babies are very capable of being the parent that they need.

You’ve got this and when you don’t, reach out, there is a whole big community only waiting to help pick you back up.

Exhaustion and the Never-Ending Battle for a Suitable Home

That’s how it currently feels. I would bet that the majority of people don’t even give a second thought to their housing needs… they almost certainly wouldn’t think about the difficult families like mine face.

We have a wonderful, stunningly beautiful home.

We love it here. But it isn’t fully suited to Sams needs.

After almost a year of planning, discussions and getting drawings done it doesn’t feel like we’ve moved forward much at all.

The council know what they will consider (please note, consider) funding, and it doesn’t come close to what Sam needs.

This we’ve always known, which is why we fundraise, scrimp and save, sell things we don’t need and generally do all we can to raise the money we’ll need.

We thought we were almost there 6 months ago, when our architect (also a good friend) drew up the most amazing plans imaginable – yes, it was an expensive design but it ticked all the boxes for right up to when our boy isn’t so little anymore.

You’d think as we’ve funding the vast majority of the work, the council would be happy as long as we made sure we did the adaptations they insist on, and that they are happy to fund, wouldn’t you?

Sadly, nothing is ever that straight forward in life.

The Council will provide a downstairs bedroom and washing facilities for him, however their suggestions leave us with no storage at all for any of his medical supplies or equipment.

Apparently, that’s not a priority. Strangely, having sufficient space to store medicines, continence products and feeding supplies is most definitely a priority… to us.

Sometimes I do wonder if the people in charge of these decisions actually have any idea what life is like for families with disabled loved ones?

Or just how much space a months-worth of medical supplies really needs in order to be stored correctly.

When push comes to shove, and it will, we will make sure that Sams needs are fully met, and that the home we love isn’t lost in the chaos of poorly conceived design.

I count us very lucky in that we have the ability to partially fund the changes that we need, many aren’t so lucky and end up in a horrible cycle of adaptations, followed by remedial work to correct issues that should have never have been an issue if family’s needs for the future (both short AND long term) had been more properly considered.

For now, there’s no more we can do until we see amended plans… I’m just so tired of having to fight all the time for what our little chap needs.

Random Act of Providence

People have said to me since, ‘She shouldn’t have done that, it wasn’t fair to you’, but I disagree.

What happened taught me something valuable; and I do not think that the, ‘act’, was deliberate in any way, and it cost the other person involved a measure of personal pain.

No, it was a random act of providence that brought us together.

It happened in the small side-room on the maternity ward where Freddie and I were taken soon after he was born, on that first, emotional and bewildering night.

We already knew the doctor’s were sure he had Down’s syndrome, we were sure ourselves, and the karyotype would be just a formality as far as any of us were concerned.

It was the middle of the night.

I was awake, Freddie was dozing in the little fish-tank crib next to my bed.

A midwife came in to do my observations: routine but necessary for all new mums, especially for one who, like me, has to be on two kinds of blood thinning medication throughout pregnancy – the hours immediately post-birth bring a real risk of potentially catastrophic bleeding.

She checked my blood pressure, pulse, and temperature, asked me how I was.

Then she went to the foot of the tank and looked at Freddie. She gazed at him in silence for a long time.

There was nothing offensive in the way she did this; at no time did I get the sense that she was gawping at him as a medical curiosity.

She almost seemed to be miles away, lost in a day-dream. Then, slowly, fat tears welled up in her eyes and spilled over.

‘It’s amazing that you got to meet your little boy,’ she said.

From her face I could see that she was struggling against her tears and losing the fight.

‘I had a little boy with Down’s,’ she went on, ‘but he didn’t make it, he was stillborn.’

I don’t recall what I said back to her, probably muttered, ‘I’m so sorry’, or something like that.

‘Amazing,’ she repeated.

In that moment, I felt like it was amazing. I still do.

Her unstoppable grief showed me what the depth of my love for Freddie would be – exactly the same as the love I have for my other children.

I hope to God nobody has ever said to her ‘It was for the best, he had Down’s,’ because, quite clearly, it was NOT for the best as far as she was concerned.

So now, whenever we’re having a bad day, I mentally put myself back in that room with her, look at the situation through her eyes, and see how very lucky I am to have been given the chance not just to meet my little boy, but to get to know him.

To watch him grow, and to be able to give him the love that every mother holds in her heart for her child, regardless of whether she is able to hold him in her arms.

Random Acts of Kindness

“Mum……….. I want one!”

Now it isn’t easy to get these plush toys, it’s not like those meerkats where you can sign up to purchase something and receive one.

Also it doesn’t make you any more entitled to one working for the company.

As part of charity fundraising events within the office over the festive period, there was the chance to win a few of these penguins in various raffles and events.

A colleague of mine who has one of the sweetest hearts started making jokes on how she will have one by Christmas and how determined she was to get Cameron one of these.

She confessed after one particular raffle that she has spent over £10 on tickets to try and be in with a better chance!!

I felt all fuzzy inside; this was someone who has met my boy only a handful of times but listens to my weekly highs and lows of being an autism mama.

Yet here she was with sheer determination trying to get her hands on one of these pesky penguins.

All the raffles and tombola’s and incentives came and went and there was no penguin.

We approached Christmas and at the end of our teams secret Santa my friend said that she had another present to give me, not for me but for Cameron……………… WILBUR!

All her efforts had paid off and now my boy would be welcoming this cuddly toy into our home this Christmas.

I was beyond happy, so touched that this person thought about us so fondly and went to so much effort.

Together we decided that as at home we were participating in Elf of the shelf, we would introduce Wilbur the explorer penguin overnight for Christmas Eve arrival.

I wrote a letter from him to Cameron and it was just a heart warming magical moment when it all came together.

I recorded a video and sent it to my friend who had made this possible and she told me that she had cried happy tears and this made her Christmas.

Her random act of kindness that was such a selfless act wishing to make my child happy was the perfect, thoughtful and kindest end to our 2016.

She will never know the feeling of appreciation that I have and hope that more people follow suit, it’s a cliché but the world would just be a better place for it!!

Finding New Friends Through Unexpected Avenues

The video showed a young man taking in his used car to get fixed and leaving, to his surprise, with a brand new Ford Explorer.

You see though, there was one more thing…

The Ford Explorer was upgraded and adjusted to allow this young man to access it with his wheelchair.

To be able to drive it like any one of us would.

Through a comment I left, praising the video and thanking them for sharing it, I found myself with a new friend!

Two actually. You see, like my son, this young man (whom I will proudly introduce in just a second) has spina bifida.

As a refresher, spina bifida is a birth defect in which the baby’s spinal cord fails to fully develop.

Through my comment, in which I shared a photo of my son in his very own wheelchair, I met Mitch Bohn.

Mitch is a communications major, who loves to watch his brother play baseball. He himself is also a huge sport and movie buff!

The automotive business that blessed Mitch with this awesome new car is known as Christian Brother’s automotive.

The very first time Mitch visited Christian Brothers was for his 1997 Chevy Lumina, which would not start.

He had to get his car towed to the automotive shop, where they informed him that his car was a fire waiting to happen!

When he realized the new Ford was a gift for him, a gift in which he never grew up to expect, he was so overwhelmed with emotions.

Since receiving the new car, it has allowed Mitch freedom knowing he did not have to rely on his mother or father to get in and out of a vehicle with his wheelchair.

I asked Mitch if he was able to give any gift, what would it be and why.

He said, “I would give someone the gift of kindness. You never truly know how much just a simple smile or hi can make someone’s day.”

As for my last question, I wanted to know if there was one piece of advice he would like to share with kids (such as my son).

In his own words,

“My one piece of advice is sort of two things actually, but they tie together.

Don’t under any circumstances let someone tell you, “No”, to doing what you want.

If you want to play basketball, do it. If you want to climb a mountain, do it.

Just because you have a disability, that does not mean you cannot dream big. So with that, dream big.”