Letter To My Son

Dear Matthew,

It is a cold and dreary August day that I am writing this. It occurred to me when I was thinking about what I was going to write, that you may not be able to read it. That thought made me very sad, but I know that you will be surrounded by people who love you and are willing to read it to you so I think it’s still important to say what I want to say.

Before you came along, daddy and I had tried ever so hard and for such a long time to have children. There was a lot of heartache in our lives and for such a long time, we didn’t think it would ever be possible.

We made peace with that fact. We knew that our love for each other was so strong that we would be able to live a happy life together, just us two.

I still firmly believe that to be true. Your daddy is the best person I have ever known, and I can’t imagine spending my life with anybody else. He is truly my soulmate.

However, after succumbing to the fact that it would indeed be, just us two, we were given the miraculous news that we were in fact expecting you.

Matthew I will never be able to put into words how I felt at that moment. It was so beautiful and so monumental that it is a moment I will remember until my dying day.

I first felt you kick on the day that I became 20 weeks pregnant. It was a tiny flutter in response to some music I was playing to you through earphones on my tummy, and to this day I still wonder if it were a good or bad response to my music choice.

On the evening of August 14th at 23 weeks pregnant I went into labour with you.

My body failed both of us. This is something that I will never forgive myself for.

You were born 5 days later, small, fragile and fighting for your life.

My brain couldn’t process that you were here and my baby, i’ll be honest. It took me a few days, even weeks to feel a real connection to you. But when it did eventually happen it was like the planets had all aligned and I was tasked with being your keeper and protector.

You were my sole thought all day… every day!

I yearned to take you home and be able to hold you in my arms for hours on end without having to ask permission. It hurt my heart every night when I had to leave you.

When we eventually were able to take you home, I felt my heart swell and I maintain that it was quite simply the happiest moment of my life. You were finally mine and daddy’s. It was bliss.

Over the months you grew to be the most beautiful and happy baby I had ever come across.

Your smile would seriously light up a room, and despite it being a much less frequent thing now, it still does.

I cried when you crawled for the first time. I cried when you walked for the first time. I cried when you uttered “dada” for the first time. I cried when you uttered “mama” for the first time.

I cried and continue to cry happy tears for all the “firsts” in your life.

I am so immensely proud of you that there are no words worthy of the emotion.

You are so clever and so cheeky, and I truly am gobsmacked by how much of your daddy I see in you every day. It makes me happy to know that you are mimicking so much of his personality, because it means that you will grow to be the best kind of person just like him.

I love you with every fibre of my being and I will continue to do so until I take my last breath on this earth.

Keep being as special as you are my wonderful boy.

Mummy x

 

 

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Speech & Language Therapy – Our Song Bag

I am aware that every therapist works differently, because of course every child is different. However for those of you, who like us, are working on improving eye contact and communication, this post may be helpful.

Matthew loves music. He has done since he was tiny and I have sung to him since the day he was born. I have therefore found that this is the most effective way of encouraging him to make and maintain eye contact.

So recently our Speech & Language Therapist set us the task of creating a Song Bag. This was to be filled with objects which might symbolise each of Matthews favourite songs. Nothing fancy or expensive, just some items that he could relate to each song.

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So the purpose of the Song Bag is to let Matthew see whats inside, and encourage him to choose one item at a time. Whatever item he chooses we then sing the song that’s related to that item. This allows him to make sense of what that particular item is, as well as encourage him to choose those items because he favours the song related to it.

When we sing, he must maintain eye contact. If he doesn’t then we simply pause the song and resume when he once again makes eye contact.

We have found this aspect of the exercise particularly positive, however it is still early days for Matthew to be able to make sense out of which item represents which song. Our Speech & Language Therapist advised us that this may take some time.

Like everything else with therapy, perseverance is key. Matthew has already made so much progress in such a short space of time, so we are very optimistic about how he will develop these skills.

In case you are curious, I will include an image of what we have in our Song Bag. Everybody’s selections are different, but this may give you some ideas.

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‘Sheep’ – Baa Baa Black Sheep ‘Star’ – Twinkle Twinkle ‘Little Girl’ – Miss Polly Had A Dolly ‘Spider’ – Incey Wincey Spider ‘Fish’ – 1, 2, 3, 4, 5 ‘Horse’ – Horsey Horsey ‘Ball’ – Hickity Tickity ‘Hands’ – If You’re Happy & You Know It ‘Cow’ – Dingle Dangle Scarecrow


Thoughts Of The Day

I’ve not posted one of these for a few weeks now, and surprisingly it’s not been for lack of the ridiculous (and ever growing) thoughts I’ve had swirling around my head. Really it’s because I’ve been playing host to an awful lot more negativity than usual and I didn’t want to put that out into the universe. Alas… I suppose it’s better out than in…

I’m on week 5 of anti-depressants to treat my Anxiety Disorder and P.T.S.D, and whether it’s this or not I don’t know, but I have been having the weirdest and most vivid dreams. One in particular has been a recurring episode for a few years now, that seems to rear its ugly head every time the news pops up with some sort of terrorist attack, which terrifyingly, is becoming ever more frequent.

What I’ve noticed is that before I could keep these thoughts 90% contained in my brain and when I woke up in the morning I would shrug it off and tell myself that I had to just get on with it. It’s never going to happen to me…

But I just can’t do that anymore. I have a son who I truly fear to take outside my front door. He is already a vulnerable child in the sense that he doesn’t understand his surroundings at the best of times… But I honestly fear that these atrocities are creeping ever closer to what I deem my safe haven, and it fills me with dread for my child’s future.

This is deep and dark I know… But it’s what I feel and fear for.

Am I the only one that feels like this?!?!


Matthews 2nd Birthday

So Saturday was my beautiful boys 2nd birthday and I thought I’d share our day with you all.

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Celebrating your little humans birthday is such a special thing… And for me, the occasion is all the more important because we really didn’t know whether we would ever get to celebrate any of his birthdays.

This year I chose to hire out one of our local party venues which comes equipped with a soft play area for the kids. It’s always nice to do the party games thing, but with Matthews sensory issues, I felt it was best to just have an area where all the kids could play and Matthew could wander wherever and whenever he felt like it.

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My sister has used the same venue before for her own children and I knew it would be perfect.

My friends brother provided the buffet (which was Peppa Pig themed) and I ordered his cake. These were all specific measures taken in order to reduce the stress and hassle of organising it all ourselves.

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As I previously noted in my Party Planning post, we had a quiet zone with a pop-up tent, blankets and cushions, and a kindle loaded with episodes of Peppa Pig. This was all in case Matthew got too overwhelmed and needed some quiet time. Thankfully he didn’t need it, and was happy enough wandering around by himself (supervised of course) without anybody bothering him.

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We even managed to sing Happy Birthday without the noise upsetting him… He was definitely in a world of his own by this point, but he was still comfortable in his surroundings and in his daddy’s arms.

It was a total success. All the children and their parents seemed to enjoy themselves, the buffet was delicious, and my boy managed a whole 2 hours in a strange and unknown environment without a single meltdown.

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I am one proud mama!


Sites/ People to follow regarding Autism/ Sensory Issues

Hello lovelies!

I thought i’d write a little post related to all of the great information I have found while doing some research on my boys condition.

I am one of those people that needs as much information as possible in order to properly prepare myself and I have found that there is an abundance of wonderful first hand experiences of mums and dads going through the same thing, as well as a bucket load of absolute garbage that you have to weed through. So I thought since I’ve already done all the weeding through that i’d share the great sites and people I’ve found so that you don’t have to go looking.

Here goes…

Finding Coopers Voice

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This is a Facebook Page led by Coopers mum Kate. The only way I can describe Kate and this page is by saying she, and it, are simply incredible. She is sooo open and honest about the struggles she and her family all go through with Coopers condition, as well as sharing in all the wonderful moments they experience together. She posts video diaries almost every day and if you are looking to be inspired then this lady and her beautiful boy will do that for you!!!

Mummy & The Bubbas – Stacey Leigh

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This amazing lady is mummy of 2, with her youngest Jacob being on the Autism Spectrum. She is the ultimate advocate of Autism Awareness and she is so real and so relatable that you will feel instantly like shes one of your friends. She has vlogs and blog posts regarding Jacobs autism journey and she is always willing to give advice or be a shoulder for those going through the same process. She has made me aware of so much related to the condition, but she does so in an understandable way. She is great – definitely give her a follow!

Michael’s Mum

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This lovely lady Julia, is a mummy to Michael who was diagnosed with Autism at the age of 2. She is a former Tax Lawyer, turned ABA Therapist for her son and she, like the other mums i’ve mentioned is just brilliant. Her aim with her blog is to help other parents, while documenting her own journey. She writes beautifully, and her posts are so eloquent that you will enjoy reading along regardless of whether you have a child on the spectrum or not. 

The National Autistic Society

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This organisation, if you live in the UK is the leading charity for Autistic people and their families. They offer a wealth of knowledge from the diagnosis process to local schools and nurseries where Autistic people are catered for. There are real life stories to read and even a shop where you can purchase merchandise and educational resources to gain a better understanding of the condition. Like I said, if you’re in the UK, get yourself along to this site and get involved. 

Scary Mommy

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This is a brilliant site whereby an abundance of “Scary Mommy” contributors create the content. It is funny and smart and you can quite easily get lost for hours among it’s articles. There is lots of posts  about Autism and all things “Spectrum” related and it is written so beautifully and by so many different, talented women that you get a whole host of different perspectives and information to work with. Love this site sooooo much… and the Twitter feed is just as great! 

So there you go. I have heeps more but I don’t want to bombard you with too much, so I’ll do another post at a later date, giving you enough time to sink your teeth into all of these fantastic sites and people!

I think the most important thing that I’ve learned from all of these wonderful people, is that no two cases are the same. There are similarities, but ultimately each child’s symptoms and behaviours are completely unique to them. It doesn’t do you or anyone else in your family any good to make comparisons, but for someone like me who is waiting (ever so impatiently) on the diagnosis process moving forward, it means I have copious amounts of reading material and can be as prepared as possible for when diagnosis happens (or doesn’t)!


Our ‘Sensory’ RED FLAGS!

Ok so i’m putting a disclaimer at the very beginning of this post as I am fully aware from research and speaking to other mums who have gone through this, that there are numerous “symptoms” which individually may not be related to Sensory or Autism. However, we have found that with Matthew having several of these ‘red flags’ as it were, that they were more of an indication that there was a bigger problem. Autism is also a Spectrum disorder and so each child is different and displays a different set of behaviours.

On that note, I will start at the beginning of our journey.

Matthew was born 16 weeks premature, and with this comes a whole host of issues. Apart from the physical implications of being this premature, we were advised by Matthews numerous consultants that there was a much higher chance Matthew would have trouble with his mental development. The possibilities were as varied as having a slight delay, to Autism and right up to Cerebral Palsy.

Matthew showed no immediate signs of there being anything wrong, other than with his lungs which is an ongoing issue. However, we were advised that any symptoms related to his mental development wouldn’t really surface until he reached the age of hitting milestones.

He met the majority of his early milestones without a problem. He rolled over, learned to crawl, babbled until his heart was content and eventually started walking at 17 months (13 months corrected due to his gestation) which was January of this year.

This was when we started to see some strange behaviours from him, which I’m going to list so as to make it easier if anybody is skimming this post for the specific symptoms we noticed.

  • He has an aversion to water and gets very upset when being bathed.
  • He does not like certain textures and often acts like he can taste them in his mouth when he touches certain things. 
  • He rocked back and forth in his highchair, often for long periods of time.
  • He banged hard surfaces with his fist, often very hard, and showed no signs of physical pain. 
  • He had quite severe Eczema and would often scratch it until it bled, again showing no signs of pain.
  • He didn’t play with his toys, instead just spun them around, put them in his mouth or tapped them against hard surfaces.
  • He didn’t make eye contact, unless myself or my husband sang a nursery rhyme to him. 
  • He didn’t respond to his name. 
  • He didn’t speak any words, only babbled. 
  • He got very overwhelmed and upset by cheering and clapping.

These were the first set of symptoms we encountered, and we brought up our concerns at Matthews Neurological Development Assessment which took place in February. This is one of many clinics Matthew must attend to check on his health and well-being because he was so small and sick when he was born.

His Neurological Consultant, Occupational Therapists and Physio Therapists all noticed these issues and advised us that he was indeed showing early signs of being on the Autism Spectrum.

They decided then and there to refer him for early intervention services. This was in the form of a Speech & Language Referral, a more intense form of Occupational Therapy and he was invited to attend a Special Needs toddler class where there was an array of Childhood Development Support staff who would be able to help and assess his development.

Matthew started this class in April and goes on a weekly basis. He also has several Therapy sessions each month with both his Occupational Therapist and Speech & Language Therapist. Since his early intervention support started he has improved greatly, and has stopped some of his previous behaviours as listed below.

  • He rocked back and forth in his highchair, often for long periods of time.
  • He banged hard surfaces with his fist, often very hard, and showed no signs of physical pain.He still doesn’t really feel pain.
  • He didn’t speak any words, only babbled. He can now say Dada & Mama, but is still very non-verbal. 
  • He got very overwhelmed and upset by cheering and clapping. This has improved greatly since starting his class. 

The early intervention Matthew has received has been invaluable and has really helped him develop. However with the decrease in some of his behaviours there has been an increase in new ones:

  • He has an aversion to certain loud noises and crowded places.
  • He, on occasion, will scratch his tongue.
  • He is terrified of Carousels (Merry-Go-Rounds) we recently discovered on a trip to the fairground.
  • He doesn’t like the feeling of grass on his skin. 
  • He has become very fussy with eating and tends to only eat certain things (which are bland in colour and taste).
  • He tilts his head back, to the side and to the front when he’s walking. 
  • He is obsessed with closing doors. 

So this is where we are at right now. All of the above behaviours and actions are very much part of his daily routine, and I’m sure there are things I’m forgetting. However, I just wanted to give as much information as I possibly could so that anybody who suspects their child may be on the Spectrum can see what Matthews particular symptoms are.

We are currently waiting on our referral for a Paediatrician who will carry out the Autism assessment on Matthew, but I am almost certain in my heart that he is on the Spectrum. The most frustrating part of this entire journey is waiting on a specialist confirming it for you. This is all we want right now, so that we can help Matthew and get the best support in place that we can for him.

It’s not what you envision your childs future to be, but it is the reality of the situation and truth be told it is just another thing that makes him who he is!


Speech & Language Therapy

Good morning lovelies!

Matthew has had a few Speech & Language Therapy Sessions now and so I thought I’d let you all know how things are going with it.

At our last session, Matthews lovely Therapist Laura gave us the task of encouraging eye contact during our song time.

I may not have mentioned it before but it is a very difficult task to get him to look you in the eye. It’s a social interaction he really struggles with, but one that is vitally important to his development as a whole. So my husband and I set out on our task to encourage our boy, while we are singing to him, to keep eye contact. If at any time he looks away, we were to stop the song and wait for him to prompt us into resuming it with eye contact.

At first he would quickly lose interest and become frustrated when we stopped the song mid flow, however over time he would begin to look at us and grunt for us to continue.

We persevered, and now the grunting has stopped and it is just eye contact he is using to let us know he wants us to continue.

Like every kid I’m sure, Matthew is not one for performing well in front of others and so I was apprehensive about Laura’s visit today. Knowing my boy all too well, I thought he would just do his usual “acting smart in front of company” routine and not cooperate.

But my beautiful boy proved me wrong.

He showcased all of his new concentration skills to Laura and even threw in a few extras when he included her in his playtime with his ball.

Laura was delighted… As was I!

It was a very welcome positive step in this little journey of ours with our boy. This past week has been particularly difficult with Matthew developing a few additional difficulties related to his sensory challenges, and so I feel like we needed this!

It’s an uphill battle, but these small steps are all in the right direction so we are feeling ever so optimistic.