What if feels like to be A special needs parent. #lightitupblue

March 28, 2017

This is an open letter to every parent caring for a child with special needs. This letter is to let you know you are not alone. April the 2nd is Autism Awareness day but every day in our lives is an Autism Awareness day. The days you are tired, the days you feel lonely, the days you struggle, the days you feel like laughing and the days you feel like crying. April 2nd is a day we can join together and help raise Autism awareness and acceptance while erasing the stigma that comes with having a child with a diagnosis of Autism.

Having a child with special needs is very much the same as having a child that does not, but yet can feel completely different. Especially when you have only one child. You are none the wiser as to what raising a typical developing child would be like. You feel you went through all the same stages as your friends after giving birth emotionally and physically- but yet it is still seems different.

Having a little baby fills you with so much joy. You can physically feel your heart bursting with love for the most gorgeous little baby. Yet having a child with special needs can make you also feel a little sad at times, maybe even a little jealous. You may ask yourself over and over but why my child?

You spend time with your friends children who are around the same age as your baby, and at first you don’t notice anything different …or so you tell yourself. You will never forget the moment you realize it. It felt like you had been hit hard into your stomach. While watching your friends children beginning to interact, speak and feed themselves you will become worried. Your friends and family try to reassure you – that every child develops at a different pace. You so desperately want to believe them. So much so, that this nearly becomes your daily mantra, but deep down you just know. You just know something isn’t quite right.

When you are pregnant you excitedly sign up to babies networks that will email you details about your baby being the size of an apple this month. You love reading these emails and look forward to the next one – sometimes even reading ahead in anticipation. Then one day you will get an email saying your child is now 18months old and is forming 2 to 4 word sentences, while you are still longing to hear the word mama. You remember the day so vividly.

The lack of speech, understanding and fine motor skills will eventually bring you to an early intervention team where you will be told what you deep down already knew. You will begin your frantic need to inform yourself. You have so many questions unanswered. You will stay up through the night with a constant need to become a self acclaimed expert. Your life suddenly revolves around therapies and meetings with specialists. You will spend too much money on one to one therapy, between equipment and tutors but you know it is worth every penny. You will spend many a sleepless night worrying and researching.

You will have spent time loving and caring for your nieces and nephews. You will think they are hilarious and will be amazed by them developing their own personality from such a young age. You can’t help but wonder about the relationship and different activities you could have had and enjoyed with your child and this will make you feel guilty for even thinking about it.

Some days will you find it harder than others. Running every day errands with your child will become difficult, starting school may not be the exciting moment you once thought and you sometimes will feel lonely, secluded and did I mention tired! You may reach out to family and friends and of course they will do their best to understand. No matter how you try phrase your feelings they simply don’t and won’t understand how it feels. Having a helping hand and a listening ear is sometimes all it takes.

It is hard to feel like the same person you once were. You will find it hard to commit to doing anything, to make plans to catch up with friends, or to give a definite answer. You will feel awful for doing this and would like to be able to explain that every day in your life is so different and so unpredictable. You will feel terrible for losing close friendships but how can you explain you have also lost the person you once were. You life, your world, feels so extreme. You don’t tell your friends your day started at 4.30 am again, or about the meltdowns he is struggle with or the days that he kicks you. You are aware some parents are dealt a much more difficult hand and you are forever feeling and reminding yourself how blessed and lucky you really are.

One day you will see on Facebook a friends status giving out their child has drawn all over their new sofa, and will feel a pang of jealous that their five year old can not only hold a pen but can draw and without hours of therapy spent working on fine motor skills . You will continue to wonder just how does it come so natural to them?

You long for the days to have a conversation with your child. As simple as asking are you hungry? Or how was school today? You will continue to ask in the hope that one day they might answer. The silence response on the drive home for school becomes normal. You can only wonder how many questions they would love to ask you and long for the day to hear all their stories they would love to tell you.

When you tuck your child in at night and you say ‘’ I love you so much’’ and they stare back at you even for a split second, it warms your heart because you know they are saying ‘’I love you too. With that it gives you the strength and determination to carry on each day and you know deep down everything will be just fine.It has to be – there is no other option.

This article featured in the American digital magazine ModaChic Magazine I would love for you to check it out pages 4,5,6

ModaChic imagery by Caleb Purcell Photography

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