A Letter to My Autistic 5 Year Old

Dearest J,

Today you turned 5 years old. I know its a cliché but time has gone too fast. Each day you grow and change. I wish I could slow it all down. It’s been a whirlwind 5 years and we have been through so much.

You were a very much wanted baby. We longed to fall pregnant, your Dad and I. We were so happy when we first saw your little heart beating on that screen. Always being one to keep us on our toes, we first got to see you at only a few weeks old as there was a concern you were an ectopic pregnancy – but there you were, comfy and healthy…and in the right place.

Being pregnant with you was easy. I craved egg fried rice from the local Chinese (which you still love today) and kebabs! I didn’t get much morning sickness, although you did stop a few of my ‘group sessions’ at preschool when I had to debate whether I needed to exit the room. I felt huge when I carried you, and heavy. It did hurt from legs and my back, and the heart burn was immense but it was worth every second.

You entrance to the world was dramatic. The doctors decided you needed to come out a week early. I went in to hospital on the 2nd December but you decided to make us wait until the evening of the 3rd. Everything seemed to be complicated and when you got stuck I was more scared than I can ever remember feeling. But you made it – safe and sound.

You were a gorgeous baby but had to fight with allergies which made you very sick. Once that was sorted you were happy. But you were a quiet baby. You didn’t babble. You were quick to learn a few words such as ‘ta’, ‘dada’ and ‘hiya’ but then you lost them. At 9 months old you went silent. No babble, no words – just laughing or crying. You were happy to just be cuddled up on our knee, or laying on your play mat staring at the hanging toys. You were never much of a social baby. You didn’t really ‘play’. Now we know that these were signs of your autism. But we didn’t know that till later.

I fought for you. I fought for you to be assessed and for support. I knew that the earlier things were in place, the better your chances were. I wanted you to have a way to communicate, a way to play and explore, and a way to be part of the world. You had a specialist speech therapist who opened all that up for us. She is the reason you are as amazing as you are today (maybe Mummy and Daddy too). She introduced you to PECs which paved the way to you communicating verbally. You worked hard in all your sessions at the Child Development Centre. It wasn’t easy for you, but we got your diagnosis and a new journey began.

You have gone from a child who couldn’t communicate and would be stuck in an obsessive, ritualistic cycle to a school boy with many friends, a confident talker (although social communication is still a bit tricky for you) and your ability to remember things and bring them into your play is phenomenal. You have this amazing ability to see things and process them, to remember them even when I don’t. Your brain is going to help you do amazing things in the future – I just know it.

You do still struggle. The outside world, the education world, the social world all present challenges to you. Maybe one of the biggest challenges is peoples expectation of you. You have a great ability to mask, to hide things for later, your stims are not always obvious. So, people expect you to cope. They don’t see the little cracks in your armour like we do. Sometimes those little cracks will explode in school, in town, in the shops. Sometimes they wait until you get home and you let the cracks be filled with sensory time, chill time on the ipad, enveloping yourself with blankets (or hiding under Mummy’s jumper).

You always feel so guilty after a meltdown. You apologise over and over, you tell me you can’t stop your brain. The day you said to me “Mummy, you need to fix my brain” I stopped breathing for a beat. It hit me that you’re older now. You know that what you have done, how you think is not what’s expected. All I can do is wrap you up in hugs, tell you it’s ok and talk through things with you. To give you strategies or ‘get out free’ cards. I’ve truelly learnt the meaning of patience and understanding since you came into our lives. You have taught me to look past the obvious and look for the hidden details.

I worry that one day you will reach that age where you don’t want your Mum, and I’m slowly replaced with friendships, relationships and your own family. I hope you’ll always need me and that you know I will always be here. I struggled when you started school. I didn’t like the fact you were away from me so long. You had friends that I didn’t know, you did things I wasn’t part of. I had to trust someone else to see you, truly SEE you. It’s not easy for you. You are physically, emotionally, mentally exhausted after everyday and you count down till you can have days off. But I know that you are a clever boy and you need the stimulation and learning opportunities that school can offer you.

You need to go to school so you can learn to be part of the social world. My dream for you is that you can be independent. I want you to have a job you love, a home of your own (but if you don’t then Mummy is more than happy to keep you forever) and a family that you create. To do this, you need to build up your tolerance and your understanding of how things work outside of your beautifully clever head. I have every faith in you.

This year you became a big brother. I wasn’t sure which way you would go – whether you would love you brother and be fiercely protective, or if you would be too unsettled by the change and reject him. At first you ignored him, you hid when it was nappy changing time and you didnt like sharing Mummy and Daddy. But you quickly accepted Baby F. You learnt his routines and helped keep them going. You knew what to expect and what his cries meant. If anyone comes over you will tell them what your bother needs. Which is his favourite toy, how he likes to bed held etc. Baby F’s face lights up when he sees you and seeing you reach over to hug him, kiss him and make him laugh, makes me heart swell. I’m so proud.

Tonight, as you went to bed, you hugged me. You kissed me. You shared your worries. You are 5 now, but your still my little boy. I promise to keep pushing you to achieve, pushing you to believe in yourself and pushing for the support that you deserve. Mummy, Daddy and Baby F love you so very much.

Thank you for these past 5 years, and for the years to come,

Love Mummy x

 

 

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