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Is it okay to grieve for your child who’s on the spectrum?

Is it okay to grieve for your child who’s on the spectrum?

I absolutely think it is okay! Of course it bloody is! How can it not be okay? Before I fell pregnant children where something that me and my now husband had never discussed or even planned to be perfectly honest but we are very glad and proud of our growing family.

 

When we fell pregnant with our first child we were over the moon (once we got over the initial shock) we would talk for hours they “we will do this and we will do that. We’ll take the baby here and show him this” etc. Our pillow talk would last for hours, Craig rubbing my tummy trying to feel the baby kicking but you know Christopher had this little habit of not playing ball when Craig was near. I remember bonding with Craig over whilst washing all the baby clothes and hanging them out to dry; i some how have my timing wrong, I always seem to fall pregnant that makes me carry at my heaviest whilst in the summer- that is not pretty nor easy. Both Craig and I looked forward to the scans and everything was always perfect, we had this dream and we couldn’t wait to live it. Not once did having a child with additional needs ever cross our minds, after all ignorantly speaking why would we? Neither me or Craig had experiences with children before let alone children with additional needs and looking back now it makes my heart feel quite heavy that I wasn’t educated very well where individuals, child or adult with additional needs or disabilities were concerned.

 

Christopher arrived 4 weeks early, weighing a lovely 7lb 12oz, I recall the nurse telling me If he had been cooking in there any longer he would have been a ten pounder just like we would come to learn 2 years our second child was.

Christopher was always the perfect child, had his milk, went back to sleep but everything was always regimented from day one, as he got older it was hard to break out of that routine, like a somewhat spell cast over is that we just couldn’t shift and it really played a part in our family life. Craig was home every weekend or every other weekend due to the nature of his job and soon enough Christopher started rejecting Craig from the house which made it hard for us to live as a family. Psychology speaking it was hell for both of us, by the time Christopher was 6 months I really knew something wasn’t quite right and it wasn’t until we moved to Surrey and I took him to a play group and he had this whopping meltdown that I knew and was hell bent on the fact he was  autistic. I recall putting myself through uni and basing my case studies on Christopher and I would get 97% on an exam and said to my husband Craig “see,  I just knew it” I saw the  modules through passing everyone coming top of the class at the end of the day I needed to know how to help my kid.

Christopher’s speech still wasn’t here, we couldn’t leave the house if it was too bright or if certain things hadn’t been done (like him lining his toys up, or growing tired of flapping endlessly) transition was hard, he could walk anywhere due to his fears and we couldn’t take him the park because getting dressed to go was a battle, getting to the park was a battle, he loved it when we was there but then it was a battle leaving and coming home and the whole trauma of trying to a ‘normal’ would have caused up roar and now he’d be having a meltdown until he fell asleep, no food would be touched in fact it would be thrown upon offering and we would be attacked, after of course he’s bashed his own head of the floor. Now tell me your heart doesn’t grieve at this point? What mother wants this for their child? Whilst I wouldn’t change Christopher it’s definitely not been easy, I’d hate for him to have to go through this with his own children because I know what that heart ache feels like.

 

We carried on attending play groups just to prove that the he was ‘socialised’ and afternoon he had categorised all the toys a child (as they do) tried to play along side Christopher and he had another meltdown, the child’s mother I recall as though it was yesterday asked me “what the f**k is wrong with your kid?” And I just remember being horrified at what come out of her mouth, to which I replied “they maybe something wrong with him but he’s a kid, what’s your excuse for being so rude aye?” I equally caught her off guard and it was then I knew my thick skin needed to be thicker and I needed to learn how to cut myself off from peoples comments and intentions so that it didn’t effect me emotionally, which isn’t a nice trait to have because I now live in a mind set of my husband and my kids and the select few around me who actually get me are all that matter; nothing else deserves my time.

As much as I’ve grown, I’ve changed and when you are told by a health professional “we can’t see your child speaking or living a normal life” that’s scary, when you see them playing in the park and they are happily in their own little world with not a fat rats backside what or who else is around them and you can see people looking because they stick out like a sore thumb, that is hard too.

We can still grieve for our child or children who haven’t passed away, we can grieve for the life that we thought they would have, we are aloud that sorrow moment when it hits us again, it doesn’t mean that we love our children any less or we haven’t come to terms with their diagnosis, who they are or how far they will go but this is a cruel world and people can be mean and whilst we can teach are children to be strong and kind and everything else it’s still not nice too see and that’s just that.

 

If you need to cry, cry. If you need to vent, vent. If you want the scream from the top of your lungs “WHY US?” Then do so. It’s not an easy card to be dealt with, in fact it’s emotionally and physically draining but  our love for our families outweigh everything.

 

Don’t be too hard on yourself and don’t feel like you can’t feel sorry for yourself either because you can, but I always like to think that god doesn’t give us more than we can handle and our paths are chosen for us. It was just meant to be, because we can handle it.

 

Stay blessed.

Much love,

 

Rach. X


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  • Amie Hughes on

    This is so so true and is how I feel as a parent to our son this made me emotional reading this post as it’s all real and I do cry even still now at why us and worry about how we can deal with the following day hour month year so on and how people who dont have a clue about what we have to deal with in our house I’m a typical worrier but this post makes me feel like I’m not alone and it’s ok to be emotional xx


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