Early Intervention

That after referral, they’ve been discharged from services and assessments, because their child has shown a certain amount of empathy, or had decent eye contact, or didn’t show any repetitive behaviors?

Why are so many services disregarding parental observations, and instincts based on a half hour meeting with a child they have only known through paper?

When we were first referred to the community pediatricians, we were asked a lot of developmental questions, a physical examination was completed, and some educational tests were done.

We were discharged at 3 years and four months, with a child who was ‘an extreme version of normal’ told to go a parenting course and give up smoking! (Me not her)

The consultant was so judgmental, and unhelpful that from that one 30 minute appointment I had lost all faith in a system designed to help and intervene.

My daughter and our family were at this point at crisis stage, the HV actually said to me, that if my mental health wasn’t stable she wouldn’t have been leaving me.

She was worried for me and my family because of the lack of support and the deterioration in my child’s and my mental health.

I would like to point out that I had a new born baby and so emotions were heightened.

I was in no way depressed at this point, just stressed out to the absolute maximum. Not one single person believed me! I was on my own and that is one lonely place to be.

Eventually things had got so bad that they were forced to refer her again as an emergency and at four years 9 months she was finally diagnosed.

This is a full 2.5 years after I had asked for help. My Natural instinct as a mother was spot on.

And it has been each and every single time I have suspected something amiss with her. She now has a multitude of diagnoses, learning difficulties and has just started a special school which she is loving.

I am hopeful for the future. But I am also very bitter that no one listened and we couldn’t get that very early intervention that we so desperately needed.

The refusal to assess her early, has led to a delay in every single service that we may have been entitled to.

Mentally she is three years behind her peers, physically she is able. Which leaves her vulnerable in the way she is treated and peoples expectations of her.

I spent two years of her life researching and googling, and fighting for her rights.

Those years we will never ever get back, but it was essential for our future and I would do it all over again I needed to. I once heard a story in a support group, that made me well up with pride.

A lovely lady had suspected Autism for her 9 year old for a long time and had heard the horror stories, so she took it upon her self to know every single inch of her child inside out, she done so much research and had written out the perfect referral proposal that her boy was seen within 4 weeks and diagnosed on the spot.

The DR congratulated her on her extensive knowledge and she is now on the pathway to getting her boy what she needs.

My advice is to do your homework, join support groups which can be found in the search option of face book and ask lots of questions, document everything.

Keep a behavior, sleep and food diary.

Know your stuff.

If you go to your appointment where the opening line is “There’s something different about my child” and no real explanation of this then expect not to be taken seriously.

Especially if your child has the ability to mask those subtle symptoms.

Know what you want, don’t be afraid.

You need to be strong and assertive. I wish any of you the best for future appointments.

I hope that you are taken seriously and I hope that you are successful in getting early intervention for your child, because in my opinion it is KEY.

How a Trip to the Carousel Taught this Special Needs Mom a Profound Life Lesson

One of the toughest of her special needs to deal with is her occasional aggressive outbursts.

We just never know when they will happen.

She can go along for months, happy as a clam and KABOOM…

Out of the blue and with no warning, another one strikes.

Even, though outings with Bethany can be difficult, my husband and I have vowed never to allow fear of a possible meltdown be a reason to isolate her away from society.

However, needless to say, we’ve learned to be hyper-vigilant and always on high alert, watching for any impeding signs of a meltdown about to happen.

Bethany loves riding carousels.

We are blessed to have a free carousel nearby.

Every spring and summer, Bethany loves riding that carousel over and over as many times as she wants.

She doesn’t even have to get off and back in line again in between rides!

It’s awesome!!

It’s a special needs parents’ dream carousel!

But sadly, every year, this carousel makes its last run on Labor Day.

So what’s a special needs mom and dad to do when their precious daughter wants to ride a carousel in the winter?

They drive her 60 miles to the only place they can think of that has a carousel operating all year round.

They load her up in the car for the 90 minute drive to a very large, very noisy, and very crowded mall that has the only carousel open all year round!

However, all the way there, mommy worries.

After arriving at our destination, mommy worried that Bethany might get mad about something, then get hit by a car while navigating through the parking lot.

Once everyone was safely inside the mall, mommy worried that Bethany wouldn’t want to wait in line for her first ride on the carousel.

After Bethany waited patiently in line and was happily riding the carousel, mommy worried that she wouldn’t cooperate when it was time to get off.

Once Bethany cooperated beautifully with getting off her horse, mommy worried that she would have a meltdown if she had to wait in line again for her next ride.

Of course, all the while mommy was preoccupied with worrying about every possible thing that might go wrong, she was filming this very special occasion.

After joyfully riding the carousel several times Bethany was content and ready to go home.

Once we all made it safely back home without so much as even a hint of a meltdown, mommy watched the videos she took of Bethany riding the carousel.

Mommy’s heart melted with joy, at seeing Bethany so happy and cooperating so nicely while riding the carousel.

At this point, mommy also realized that she had spent so much time worrying about every little thing that could have gone wrong that she never actually enjoyed the special, happy moments while they were happening.

Mommy vowed to stop worrying so much about what disasters might happen.

Mommy resolved to strive to enjoy all life’s sweet, happy, precious moments while they are actually happening.

Not just afterwards when she watches them on video.

5 Cooking Hacks for Special Needs Families

Most special needs families will also say that the hassles of eating out far outweigh the benefits.

Sometimes, though, you might consider cooking an unachievable goal.

You’re exhausted, your children need you and you definitely didn’t go to culinary school.

Check out these meal-prep shortcuts, and you’ll be able to turn out a delightful dish in record time!

Peel Tomatoes (and Potatoes) Quickly and Easily

While rushing to get dinner on the table, you probably say, “Next!” to any recipe that calls for peeled tomatoes or potatoes.

Now you don’t have to.

Cut a tiny X into the bottom of the veggies, place them into a pot of water, and boil until the X begins to widen.

Scoop them up, and submerge them immediately in a bowl of ice water until cool.

Then, start peeling from the X mark.

Juice Lemons and Limes More Effectively

To extract maximum juice, heat up your citrus fruits in the microwave for 20 seconds before you squeeze.

Free Corn Kernels

Kids and adults both enjoy fresh corn, but they know eating it off the cob is messy and messes with their teeth.

Now, you can use a bundt pan to remove kernels quickly.

Place the pan open-side up, set the stem side of the cob over the hole, and use a knife to shave kernels off from top to bottom. The hole in the pan acts like a holder, and the pan collects every kernel.

Slice Raw Meats With Ease

Slicing raw meat can be messy and frustrating if you don’t have a great knife or stellar knife skills.

Simplify this task by placing your meat in the freezer for 15-20 minutes before slicing.

Don’t worry you’re not actually freezing, it’s just enough time to make the meat more firm and stable.

Your knife will zip through with ease and little mess.

Easily De-Seed Pomegranates

Pomegranate seeds are nutritious and delicious in all kinds of dishes (or alone).

De-seeding a pomegranate can be tricky, though.

Here is the quick way to do it: Cut it in half, push down on the middle, and hit it with a wooden spoon.

Do this over a large bowl of water so you can easily remove the pith and simultaneously wash your hands.

Bonus hack: Want to serve birthday cake before a birthday boy or girl meltdown?

Cut it quickly and cleanly with a long strand of (unflavoured!) dental floss.

Position the floss across the cake where you want to slice, and pull both sides of floss down through the cake in a quick, even motion.

Release one side of the floss, and pull it slowly through with your other hand.

Happy birthday! (Use this method to slice brie, too.)





Special Needs Parenting: ADHD Medication Has Changed Our Lives

I wanted to share OUR experience for the people who have been put off by others who have a very strong opinion AGAINST medication for children with Attention Deficit Hyperactivity Disorder (ADHD).

I have three children, and two of those are diagnosed with Autism and ADHD.

They are the proverbial chalk and cheese.

You might have seen a meme recently which said something along the lines of:

“Yes my children get along just fine, as long as they aren’t in the same room, cannot hear one another or aren’t breathing the same air, everything is fine”

This meme was a hit with special needs bloggers and I saw multiple versions of it spread across social media like wildfire.

It definitely struck a cord with me.

My two eldest CANNOT even speak to each other nicely, everything is heated.

They both have ADHD and are quite hard to control, neither has the ability to sit for very long, and quite often the eldest is skidding on the floor around the dinner table on his head, with his arms dragging along by the side of him.

He settled really well on the first medication that was offered to us.

My middle girl, has very severe ADHD, her impulses and attention and concentration span are hit hard, and it has taken us a lot of time, and follow ups, to get her medication just right.

For this reason it was much easier to make the decision to medicate her, as opposed to her brother.

She was violent, he wasn’t, she was so hyper and out of control that everything was an enormous task of fighting, screaming, shouting and upset for the whole family.

When we were told about my son’s diagnosis we did have a big discussion about medication.

We had seen how the medication worked for my daughter and even though it made her slightly drowsy in the beginning she got used to it and the tiredness diminished.

She was in no way a zombie, but because he was less severe we worried how he would react to it.

He was struggling at school, was over 2 years behind and had little support in school until I moved him to a different one with better inclusion and support was instantly put in place.

However he was still struggling.

After his school assessment by the clinical psychologist was undertaken, we were offered medication and we agreed to trial it.

I am so glad that did.

Not only has it improved his attention and concentration, he is happier, he fidgets less, his academic levels have improved significantly and I am no longer pushing for an Education Health and Care Plan for him.

His writing 6 months ago was illegible.

It is now beautifully presented, in line, he has learnt cursive and is really looking forward to getting his pen license.

I am so mega proud of him.

For my daughter, it has taken longer to get the balance and type of medication correct, but I am confident that the one she is on now is starting to have the appropriate effect.

She is less violent and her meltdowns have decreased.

She has even managed to listen to, absorb, register and laugh at an anecdote.

She has NEVER done this before, she actually laughed, and I was so happy!

Our family is now starting to settle down, they are beginning to have conversations with each other, and join in each other’s play and games.

Hell they are even watching the same programmes on the same sofa.

I don’t think it’s all down to the medication though.

They both have new schools, and settled really well.

We have made a lot of changes at home, with sensory aids, equipment, and routines are all in place quite rigidly.

As a combination it is working well.

So don’t dismiss medication at the first opportunity because others have had negative affects, or opinions.

Think about it, weigh up the pros and cons, and think about the child.

Speak with school, and ask their opinion.

How is their learning and emotional well being?

It needs to be considered thoroughly, because for me, and in my honest opinion, ADHD medication has been an absolute life changer for our family.

Special Needs Parenting: Finding The Right Words

So why is it so hard to sometimes find the right ones?

I’ve become more aware of this since having Heidi.

11 days overdue, after a healthy pregnancy, Heidi arrived just in the nick of time to be the best Mothers’ Day present I could have wished for.

Unfortunately she suffered an HIE (hypoxic ischemic encephalopathy) incident soon after birth, meaning she was deprived of oxygen and has suffered damage to the brain as a result.

My inability to find the right words started almost immediately.

How do you tell your mum that her long awaited grandchild has arrived, but has been whisked off to another hospital for cooling treatment? How do you text your friends when you can’t use the standard “Mum and baby doing well” line?

It must also be hard for others to find the right words to use when they first hear that things haven’t gone to plan.

Is it appropriate to say congratulations on the birth of your baby? Could they be confident enough to say that everything would be fine? Should they say anything at all?

Over the months, since Heidi was born, I have found myself choosing my words carefully.

When people ask how she is doing, I like to say that she is developing, or gaining weight really well, or amazing us each day.

I was conscious at first that if I said “she’s doing great” that people might think she was unaffected, or get a surprise when they saw her with tubes and oxygen.

I’m not in denial about the challenges we face, but I don’t want these to define the gorgeous little girl that she is.

It’s sometimes words from well-meaning strangers that can catch you off guard; the person who saw Heidi’s feeding tube and asked what was wrong with her, or the lady waiting next to me in the pharmacy who asked me if Heidi would still develop “normally”.

Those words hit me hard at the time, and whilst I was of course polite in my response, inside I wanted to shout that there was nothing wrong with her, she was Heidi-perfect, and that she would develop to the best of her ability and in her own time.

I fully understand though that people don’t mean to upset or offend, and that many people struggle with finding those right words, just like I do.

Advice for anyone who finds themselves in that situation?

Admit you don’t know what to say.

Acknowledge that you can’t find the right words.

Give a warm smile or a hug instead, they are much harder to misinterpret!

Special Needs Parenting: Our New Normal

Once Zachariah had come round and felt less groggy, he started to show his little cheeky side again.

He started drumming and singing, and just being so darn cute!

I felt another sigh of relief, he was happy and he was delighted to have his Mummy and Daddy by his side, which helped our guilt as Zachariah wasn’t holding any grudges against us for what he had just been through.

Sounds silly, I know, but it’s always good to still be the good cop!

The nurses kept close eye on the little sausage and agreed to start him on slow pump feed to give his tummy time to adapt and then start the bolus feeds the following day.

The training went really well and although I was a little scatty to begin with I soon picked it up.

What was I worried about?

This was so simple and Zachariah was not bothered by it all.

We can quickly get ourselves in such a state over the things just because they are not familiar with them, or because we feel worried and out of control.

Now that we are on the other side I can visualise it all, and you know what, it’s really not that scary after all.

I no longer feel upset that he won’t be eating my meals, but reassured that he’s getting all his nutrients without the hazards of choking and aspiration.

Bringing him home was such a proud moment.

The way he has just accepted it all and got on with things has just been so amazing and taught me a good few lessons about what is important.

It’s incredible how even post-op Zachariah is teaching me new things.

Children are so resilient aren’t they, they don’t have the fears that we seem to get caught up in, their innocence can be quite refreshing and calming in some ways.

Taking his lead with it all has definitely been the best way, he’s been the one who has called the shots, therefore we have found it much easier to handle as we’ve seen him cope with it all so well.

Before the op I was telling everyone that we’re not sure we’ll make set plans as we don’t know how Zachariah will be.

In hindsight I think I was worrying about how I would be and whether or not I would be comfortable doing his feeds outside the comfort of my home.

Needless to say, there was no questions about it once we were home, it came so naturally to us that we have been out more than usual.

With Tim having time off work we were able to get out and about, Zachariah even attended his first Christmas party of the year!

I guess what I am trying to say is the grass can be greener on the other side.

Our new normal is a wonderful normal, it has made me even more accepting of things I am unfamiliar with.

I now have this new knowledge and new skill to add to my ‘Mummy’ CV.

It’s given Zachariah a better way of life, made him healthier and will hopefully allow him to become more awake and alert throughout the day.

Change is an opportunity, it’s new, it’s exciting, try not to look at change in a negative way but celebrate it and embrace it.

Really hope this helps people who are worrying about the unknown and change.

Special Needs Families: All You Need Is Love

All you need is love.

And a consultant and physio that you completely trust.

But love is still pretty high up on the what’s needed list!

With Valentine’s Day on the horizon, and an episode of The Undateables on the TV, my thoughts have been wandering to love and relationships.

Our little girl, Heidi, will be two in March, and, to give a very brief history, suffered a HIE (hypoxic ischaemic encephalopathy) event shortly after birth (basically her brain was starved of oxygen).

She has Cerebral Palsy, and lots of the extras that go with it; epilepsy, dystonia, hearing and visual impairments, tube fed, trachi, developmental delays, you get my drift. Non-mobile, non-verbal, but pretty ace!

Now I know that generally, two year olds aren’t really worrying about whether they will find a partner, get married and have children. Episodes of Peppa Pig and the Twirlywoos possibly take a much higher priority.

Heidi isn’t your average two year old though.

As much as I try not to, sometimes I can’t help thinking about the future – both the actual future that we might have, and the “could have been” future that we had dreamed of before we started on this roller-coaster journey.

As my bump grew through the pregnancy, so did the images in my head of how our baby would grow up to be a toddler, a teenager, an adult, and what kind of person they would be.

It never crossed my mind that they may be described as, “complex”, or, “severe”, but that’s where we are, and the images have had to change.

I know that there is hope, and nothing is for certain, but I accept that it’s probably unlikely Heidi will develop to the stage where she could have a meaningful relationship, you know, like a boyfriend.

At first I felt a bit sad, but then I realised that she won’t have to worry about horrendous first date nerves, or about the number of Valentine’s cards she gets compared to her friends, or about if she will ever meet, “the one”, or about all the other things that teenage girls and women (and of course boys and men) have to ponder.

What she will know though is unconditional love. By the bucket load.

Watching The Undateables (if you haven’t seen it, it’s a TV show that follows people with different conditions and challenges, as they search for love) brought out mixed emotions in our household.

My partner was concerned that it could be seen as mocking people, whereas I felt it was a really positive message (apart from the title, not liking that too much, it makes it sound like these people won’t be able to date, or that there is something, “wrong”, with them).

I believe it’s showing that we’re not all made the same, but all have the same entitlement to love and be loved.

It opened my eyes to how amazingly different we all are.

I think I have been so absorbed in our little bubble, that I had forgotten to look out to the big wide world and see what was going on; the struggles that other people face; the battles that people go through on a daily basis; the loss and despair; the miracle stories; the celebrations; the laughter; the love.

So yes, being in the world of special needs may mean that we need extras to help us on our way, but we all need love, and I hope you have oodles of it.

Special Needs Mum: I’m a Fraudster

I’m a fraudster.

You see I’ve been given a job that I’m not qualified for…and it’s only a matter of time before I’m found out.

I applied for a new job, to become a Mum, in 2014.

It’s something I’ve always wanted to do, but never had the courage to apply before.

I felt a bit nervous about it, but had done my research and thought I could possibly scrape through with the little knowledge I had (OK, I had babysat for a friend on a couple of occasions, but everyone fabricates their CV a little, don’t they?).

Anyway, I don’t know how the mix-up happened, but in 2015, I was given a different job, not the Mum one I was expecting; I was given the role of Special Needs Mum.

I hadn’t seen the advert for this one, and certainly hadn’t applied for it, it just kind of happened.

Now I am nowhere near qualified for this position. I don’t have any medical background – I haven’t even stayed in hospital for more than a day before I got this job, and feel a bit queasy when I watch 24 Hours in A&E on the telly.

I don’t have any physio experience, never heard of portage, clueless about milk and weaning, and didn’t event know that feeding pumps and gastrostomy tubes existed.

I’m not sure how, but I think I have, just, managed to wing my way through 21 months in the job.

I did try to tell a nurse, when we were first in hospital, that I didn’t think I would be any good at this job, in the hope that she’d take it off me and give me the regular Mum role instead.

She didn’t. She told me that I would be fine, that I’d find my way, and would do whatever was best for my little girl.

Looking back, I guess she was right.

I’m no longer daunted by the medical terms that get thrown about during hospital stays; I’m a regular therapist doing stretches and exercises to help ease aching joints and encourage better head control.

A pretty organised admin assistant making sure that we turn up for all the appointments that have to be squeezed in to each week; a dietician, tweaking the volumes and rates of feeds; a nurse and pharmacist who orders and administers all the required meds (several each day); an advocate for our little girl; a play-pal to entertain and have fun with; and I’m a mum.

Just a mum. Turns out it was the job I wanted, it’s the job I love, even if it is harder than I could have ever imagined, with longer hours than I expected, and without any training plan to work towards.

I hope I don’t get found out actually, I can’t see myself doing anything else.

Now, I wonder what the chances of a pay-rise are?!

(If you’ve recently found yourself in a new, unexpected role, then hang on in there, chances are you’re doing great!)

Special Needs Parenting: When Your Child is Diagnosed and Dumped

Some people were sympathetic, others shocked, and others commented along the lines of, ‘This should help you get him all the help and support now.’

It is incredibly common to hear that.

But it is a myth.

Both of my children were diagnosed with autism and then dumped.

Having a diagnosis has not enabled them to get the support they need.

Even with a diagnosis my non-verbal son still can’t access NHS speech therapy.

Even with a diagnosis neither of them are currently receiving occupation therapy despite both of them having acute sensory needs and neither able to do self-care such as dressing themselves.

In actual fact BECAUSE my daughter has a diagnosis of autism she has actually been REFUSED access to mental health services.

They have been discharged by educational psychologists claiming there is no need for ongoing support.

Despite being diagnosed their educational support plans are continually threatened with closure.

Even our trusted community paediatrician who has been monitoring their development for almost 8 years is suggesting discharge since there is apparently little more she can do to help.

On the actual day of diagnosis we were handed and leaflet and sent on our way.

This is happening to so many thousands of others and it needs to stop.

Families are emotionally vulnerable, confused, desperate for support and looking for hope.

One leaflet is not OK.

My children had more professional support BEFORE they were diagnosed than they have had after!

Before they were diagnosed we had an abundance of meetings, successful claims for DLA with huge backing from every professional we came into contact with.

We had access to specialist nursery provision, comprehensive educational support plans in place for them both, a weekly visit from a learning support teacher, fortnightly speech and language and physiotherapist and occupational therapists support.

We had six monthly paediatrician clinics and referrals to any other services we needed.

After diagnosis, everyone seemed keen to discharge us.

We were diagnosed and just dumped.

We are not alone.

The system seems to come to a crescendo after diagnosis then leave families hanging…alone, confused and vulnerable.

No wonder so many autism families feel let down and despondent.

We were built up and emotionally prepared for diagnosis only to be ignored afterwards.

Families need much more than a leaflet when their child is diagnosed and better ongoing support needs to be in place.

Only then can we perhaps stop this awful policy of diagnosing children and dumping them.