Reach for the rainbow
Updated: Nov 4, 2021
This will probably be the hardest blog post to write, why?
As its my first one and I'm not sure how it will be received, and it contains my honest raw emotion and will be the first time I’ve ever really spoken or wrote down about Harry.
So why am I doing it now?
In light of National autism week 2019, I decided I would express my feelings in the hope I can help others to understand how amazing children with additional needs are.
Where to start?
I never know where to start whenever I’m asked about him, but Harry was my 8lb bundle of joy born 3 weeks early. After a tough start in life I just knew I always had to protect him, we have the most amazing bond. Growing up Harry struggled with any social situation, he hated being held and was only really comfortable with me. He use to cry a lot around others and was hard to settle unless with me, but mostly he had some quirks about him as he grew up that niggled away at me.
1 year on
For a while I kept it quiet, but eventually I spoke to Darren who had a hard time grasping what I was saying. He thought I was looking for faults in our son, and that I was just assuming things about him, it caused countless arguments whenever I approached the subject but I just needed him to see it to. I spoke to others who echoed Darren’s feelings and wasn’t able to see an issue and well, this hit me quite hard. Mainly being for a while I suppressed any thoughts I had as I feared people would judge me and my parenting of Harry that led him to act the way he did.
Was it possible for me to be the cause of how he acted?
But I hadn’t actually anticipated that people may assume I was mad and out of line for assuming anything about him.
Like why would I pick faults in my son?
I tried my best to continue, but the more Harry found it hard dealing with social situations. The more my mind and heart told me it just wasn’t right and I hated how uncomfortable he felt, and it made me anxious so much so I didn’t want to participate in groups or social situations but I never gave up trying. I laid awake most nights fearing I was making a mistake by being silent and should just speak up regardless of what others thought. But I didn’t think I could do it alone it would take 2 parents to both agree about the situation and so far only 1 did. I would spend hours searching google typing in every ounce of Harrys behaviour, to hopefully read it was just a stage or a leap he was going through and to see if I was over reacting. But I was always faced with the same answers and I felt crushed & trapped.
How could I possibly show an article on google to people, to prove my thoughts about his behaviour they definitely would assume I’m mad.
I’d seem like the typical over worried parent, and no one would ever take me seriously. But by the time Harrys 2nd birthday was approaching. Our relatives & Darren had started to notice more of Harrys quirks and his social anxiety. This uTurn was enough to give me the confidence I needed to speak to a professional and actually realise that I am not mad or assuming things about my son.
When a letter arrived stating Harry was due his 2 year review, I knew this was the opportunity I needed to voice my concerns and be listened to, but I was still hesitant incase they assumed I was just a crazy first time mum.
When me & Harry arrived at the review, as soon as the question was asked “do you have any concerns”.
I started to reel off all my concerns and observations I felt like I just rambled really quickly and that I was saying too much, I was to scared to go slow incase they thought I was mad.
But I will never forget this moment, the health visitor slowly turned around and places her hand on my shoulder and said, “Thank goodness you had said all that, as I had noticed some of his behaviours and would of suggested it was investigated further”. At that point I broke down, I cried harder then the day I did when Harry was born. Finally someone agreed 1st time and finally someone would try help my precious little boy. The health visitor asked me if I was ok after seeing me break down and my reply was simple “someone finally believes me, I’m not making it up”.
She hugged me and I just knew things would be ok from here. The next day the same health visitor called me to check up on me. She said I had touched her heart of how desperate I was to be believed and how she felt sorry for me that it had to come to that.
(This same lady is now one of the key professionals, in Harrys life who has helped us so much and without her I wouldn’t feel as strong as I do today.)
Not long after this appointment Harry was referred to a paediatrician, who also agreed he had communication and social issues that would need further investigation, and since that appointment in October 2017 our lives have changed.
So where are we now?
As Harry grows bigger, so does his feelings about the world around him. Imagine being in a world full of people, but feeling lost and isolated at times and only able to express your feelings to one person. Scared to give eye contact to anyone in fear they may approach you and try to interact with you. Imagine feeling frustrated that you cannot express yourself or understand the world around you but at the same time feel curious about the world and what it holds.
Well this is Harry on a daily basis.
The world is a scary, unpredictable and well just dame right hard. The slightest change in Harrys routine can cause a lot of emotion and upset. The only person who understands him, and what it is that makes him upset and uncomfortable (most of the time) is me.
Harry knows this, so no matter where I am or what happens if something upsets him he will ask for me and cry and become very overwhelmed until I come to his aid.
I feel a huge amount of pressure daily to understand Harry, to ensure he feels safe. When Harry gets upset, it’s others that ask me what’s wrong and what’s caused him to get upset. Sometimes I wish I knew, I wish I had all the answers but I simply don’t. I feel like a failure that I don’t even understand my own child, somedays this can cause me to become withdrawn as I start to analyse what happened the previous day to understand his behaviour so I can at least find an answer to understand why and try to prevent it happening again.
I feel a huge sense of despair and disappointment when I don’t understand him. After all every parent only wants to console and comfort their child and ensure they feel safe and tell them it will be alright. But what happens if you can’t actually make your own child feel safe? Especially when you don’t know what it is that has made him feel the way he does. These days are when I feel at my lowest & wish I could just have an insight into how Harry sees the world.
Our daily routines I adhere to and some days I feel guilt, guilt that Jessica doesn’t always gets to do stuff if it falls within our routine. I worry that I don’t always do the same, as I did the previous day and that it may upset him sometimes I drive myself crazy overthinking my every move.
Ensuring each day represents the day before it, somedays I assume that something little that’s changed may cause upset, but then he copes fine and then the next day something that I think he will cope fine with he completely breaks down about. I’ve now learnt to treat every change as if it would cause distress. As something that he may seem to of coped with fine, he will then over analyse it and about 2 days later become distressed about it and keep repeating himself about the situation. Such as “Harry fall down” the reason this causes distress is that Harry normally does things in routines of 3. So if he is running in a circle he has to do it 3 times, if he falls on the 2nd circle that routine is broken and he may just deal with it ok on the day he would be upset but wouldn’t be inconsolable. But couple days later he will be upset and keep repeating himself as his brain processes things a little bit slower. We would have to go back to the same place it happened and allow him to complete his circle of 3. This is also what happens at his nursery they have learnt now to ensure no pattern is left undone.
If I tell harry something such as “You can have those sweets when we get back home”. He will think that any other time we have sweets we must eat them at home. The next time he had sweets I said to him “you can eat them on the way home”. He replied “have at home mummy” and I opened the sweets and said “you can eat them now sweetie”. “No mummy at home”. And he carried his sweets in his pocket holding them (as I opened them) all the way home he daren’t even eat one.
But that’s Harry when you do something once that’s it, you will have to repeat the same action every time. Because he takes every action liberally. Sometimes I wish I didn’t tell him things or choose an action that leads him to act that way each time. I am and will forever be my own worst critic on how Harry is brought up. I have so much blame towards myself and my actions, that lead Harry to behave how he does. Because I cannot always undo an action once it is done.
Harry is incredibly clever for his age (3) he has a photographic memory that can make things tricky if I cannot remember the things he wants me to. Such as the last time we went into a supermarket he will remember the checkout number we used. So the next time ask me to see I if know, and if I can’t he gets a little sad and tells me what number it was. His sadness I think is because he cannot understand why I can’t remember the things he does as to him they are special things. With Harry numbers play a huge part of his life. He is fixated on them when he was younger he just use to count, and there was no limitation to how far he could go. Once you tell harry something once he remembers it each time. So when he use to ask me what comes after 40 I’d say 41, then he would ask next number and so on. Once I had said the numbers he would remember for next time and his learning knows no boundaries.
But as he grows up, he now likes adding numbers, timestable etc. Which is fantastic but maths isn’t my strong point so a calculator is always on hand for me when he starts to go past my learning limit.
For Harry numbers are great as they are a constant in his life that won’t change. What I mean is no matter what changes in his routine or life to make him unsettled, numbers are something that will never change. So 2+2 will always be 4 it won’t ever change and that’s why Harry loves numbers they relax him.
Harry struggles to understand the concept of imaginative play, so things like a toy kitchen he struggles to understand how to pretend to play with it. As he cannot understand why the taps on it won’t produce real water, why would they be there? The oven why doesn’t it actually bake something. This is one of the many boundaries Harry struggles to overcome when trying to play with his peers. He wants to learn and they want to play. And he cannot grasp the idea of that type of play. Harry takes things liberally and to his peers they don’t understand that.
Harry has such a flare about life, he sees the beauty in everything he can find a rainbow even in the darkest of days (he once told me a French fry looked like a rainbow when we sat on a bench seeking shelter from the wind, and the picture above on a rainy cold day he is drawing rainbows on the window) and he told me that day “look for the rainbows”. I’m sure this was Harrys little way of telling me, if life gets a little tough just look for your happy place.
Harry really sees the beauty in everyday, when it rains he tells me “it’s a good day to be together”, Harry sees no limitations no matter the day we have everyday to be thankful for and I adore him for this 🌈.
After all life is beautiful.
He really has changed the way I see the world. His love about the world around him inspires me daily. Harry may struggle socially, but his heart is big and almost everyone who he meets falls in love with him. He is kind & although he has a sensitive soul he tries his best to express himself to those who he feels he can do it with. He cares about others around him and how they may feel, if I’m quiet he will say to me ” mummy are you ok?” As he strokes my arm. Then he will hug me, he worries my silence is due to being sad when really I’m just relaxing. But harry cannot understand facial expressions such as happy, sad or angry. So his little brain tries to preempt how I may feel, as he does genuinely care.
When I change my hair, Harry tells me I’m beautiful. When I’m sad he will hug me and say ” it will be ok mummy” but he never knows that sometimes he is the reasons for the tears I shed as I worry about him so much.
When we are out if a child cries he will say “mummy they are sad” I say “it’s ok Harry they are being looked after”.
But he will keep looking at them and I can tell he is trying to understand why they feel sad.
Once at a party, there was a little girl who was quiet and hid herself away in a corner. Harry sensed her anxiety and went over and touched her hand and then he walked away. This little girl then followed him wherever he was sat & he didn’t mind. It brought tears to my eyes as Harry really does care about others but he doesn’t always get the chance to express it. But he seeks his moments and knows exactly what to do to sprinkle kindness.
That being said Harry does get anxious & overwhelmed in social situations, especially with other children. When he is invited to parties it can take him and hour to build his courage up to go into the party. Even then he will try his best to avoid getting to close to other children, the slightest noise can make him extremely upset. He goes as he wants to play but every situation throws anxious hurdles for him, some harder then others to overcome.
It’s taken him nearly a year to be fully comfortable with Jessica. She never gave up on him always hugging and kissing him, even though he use to push her away and reject her a lot. She was never deterred and her love for him makes my heart burst. She will always try to play with him even when he just isn’t in the mood. As soon as he Says “no Jessica” she just leaves him to it. I do feel sad for her at times as she only ever wants to play with him and I hope in time they can play together. Harry loves Jessica too and now tells her this very affectionately, he worries when she isn’t around (if I take him out alone) and hates seeing her sad. I am so thankful they have each other and there friendship & love is built upon unspoken words.
Harry does understand the concept of friends, but struggles to be able to allow other children to be near him. Sometimes he can lash out, by lash I mean he can cry and push children if they get to close to him. As he doesn’t like other children touching him, one day when he was sad I asked him what was wrong and he said “I hurt my friends”. When I spoke to his nursery they said he pushed another children who came to close. So now Harry felt sad that he upset others, it’s a viscous cycle and I’m upset daily for Harry as he really wants friends but he cannot deal with all the aspects a friendship brings. Something in his brain doesn’t always allow him to act rationally around other children.
Its not just other children, even though he adores his sister he can become upset if she spends to long in his personal space, or if she tries to touch him a bit to much. He can’t help it and she is to young to fully understand the boundaries, but he does get upset once he has upset her by trying to move her away from him, he is always saying sorry to her & kissing her but it’s like a reflex he cannot control.
In a world full of hate, Harry inspires me to be kind. Our quest is simply to help others when we can, and although Harry struggles to form and maintain friendships he still wants to help others. When we donated presents to our local hospital, he was so pleased to take them and help others, he even helped me wrap them and helped choose the gifts. He really is my Superhero, but unfortunately the world isn’t always as accepting.
We have had our fair share of negativity since we openly spoke of our journey, some people still don’t and cannot accept autism and Harrys traits. I’m sure it’s because people don’t fully understand it, and thats what makes them arrogant towards it. But here is just some of the things we have had said to us.
• But he looks Normal (not sure how he is meant to look)
• isn’t he young for you to decide if is disabled, can’t he just be shy?
• You obviously didn’t socialise him enough
• They will put a label on anything now
• Thats a shame as he is a handsome boy
• To get him diagnosed you will ruin his life, he will never be able to do anything.
• He is rude (referring to the lack of eye contact)
• whatever will they come up with next (referring to the definition surrounding autism)
• To look at him, you wouldn’t assume he is backwards until you hear him. (Referring to Harry when he recites his numbers)
These are just a few examples, almost every week we have hurtful comments.
Comments that cannot be taken back. Words that are expressed and they don’t think Harry can understand but he does, never be fooled by a quiet child they see and take in more then you realise.
I try not to let him see that these words affect me, but sometimes he does see it. After all im only human, but I’m not ashamed of who Harry is. But I do worry the world that Harry is growing up in, so I have made it my mission to ensure I try to educate others and show that being different makes you amazing and not an embarrassment.
Harry sometimes chooses to be quiet in social situations, and can become withdrawn. I’ve had many people who once they have tried to engage with Harry and he didn’t respond, now choose to give up on him and simply ignore him. But persistence is key with Harry, even if you said hello to him on 8 occasions and he ignored you each time. He won’t forget you said hello to him, and eventually he will greet you first and say hello and it will take you by surprise but make your day. He doesn’t forget anything or anyone. But people are so quick to forget about him.
The world would be a far better place with more kind souls like Harry, he shows love & kindness even when the world doesn’t always show it back.
If I can hope for anything it’s by reading this that people try to understand additional needs and that not all children are the same. But we don’t have to be the same to fit into this world, being unique makes you incredibly special. In fact they are super human but never treat them anything less then human.
To end this post I will write a little about my feelings surrounding Harry and Darrens feeling.
I haven’t included all of Harrys quirks in this blog, purely as I do not want people to assume their child may be on the spectrum if they see similar traits in their child. I would always recommend you seek professional advice.
I’m not entirely sure how to write down my feelings, I always get asked “would you change him?” And “how do you feel about Harry”.
Firstly I’d never ever change Harry it’s a completely stupid question, that isn’t even worth an answer. But Harry is bloody awesome and I wouldn’t want him any other way. I’m not sure what people’s perception of normal is, but to me life with Harry is normal.
Harry has been gifted to us for a reason and I feel incredibly special. Harry is my first child and I know nothing different, am I upset or angry about the situation?.
NO I have nothing to be angry or upset over, I only worry about Harry, almost everyday I worry “what if something happens to me?” I mean I’m the only person who truly understands Harry, my anxiety is quite high most days as I think about scenarios where Harry may have to grow up without me. I know every parents fear is leaving your kids behind, but I do worry so much about Harrys future. That is why I’m so passionate to change people’s views.
How do I feel about Harry?
Getting Harry diagnosed will not change anything about how I feel about him as I know that’s what people are asking. In the beginning I blamed myself and questioned myself, wondering if something I did led Harry to act the way he did. But I have finally accepted that nothing I have done, has affected Harry. Although I’ve had a fair share of comments towards me where people assume otherwise. Harry was born gifted and I want the world to see how amazing he is.
Finally I must end by saying I’m not angry at Darren for not trusting my instincts in the beginning. I have detailed what happened in the hope others will trust their instincts and to show that it isn’t always easy these situations. Any parent would not want to assume anything is wrong with their child, for Darren it took a little while to understand about it all as it has me. Harry and Darren have a wonderful bond and having a child with additional needs can make parenting a little harder at times but so worth it. I’m proud to say we can do this together.
But most of all I’m proud to call Harry my son and I always will ❤️
To finish I will include a statement from Darren.
I didn’t always see Harrys quirks to begin with as I worked away a lot, so when I did see Harry I didn’t see what Mel saw. So it did take me a while to get on the same wave length as Mel but now I accept its there and concentrate on the positives around it. If Harry doesn’t want to be social or doesn’t want to be social in big crowds so what? I want to let him do whatever makes him happy. If that means being on his own or just with us then so be it. If that’s how he is happy I will not force him to do what is deemed as "Normal" if that makes him unhappy.
We will concentrate on nurturing the positives and what it is that makes him happy. We learnt from a young age how sharp and intelligent he is, so the challenge for us will be keeping his brain engaged as he learns very quickly.
He is awesome and he is my son no matter what, I'm his dad and I will help him achieve what ever he wants to do ❤️.