Because it never ends

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I woke up this morning. Once again it was far too early. One again the alarm clock never got a chance to ring as screaming became my wake up call. My mornings, like so much of my life, are very predictable.

In a few weeks it will mark six years of it being like this. I thought children were supposed to sleep through the night at some stage?

I guess that is one of the things about my children having special needs. The early waking never ends.

So to stop the screaming I dress him. In the exact same things he wore the day before. So it may be a school day but it really doesn’t matter because he wears the same jumper whatever day of the week it is. Sometimes I can shrug that off, laugh at it, even smile at the predictability of it, but other times it gets to me deep inside. We’ve been doing the jumper thing since August 2013. It is one of the hundreds of things we are ‘working on’ just now but getting nowhere. It just seems relentless. And sometimes pointless.

On a positive he has still been saying his first word ‘on’ that we spent an entire week learning last week at half term. It still isn’t fully pronounced but he is trying. And with massive prompts he is using it for the DVD player, the iPad, and his jumper. But like everything, it is all consuming, all encompassing; exhausting. I can’t let it go because if I just do things without having him try and talk I will be training him that there is no need to speak; no reason to communicate. So now we have started it has to continue. And if we manage to, by some miracle, add in a new word, it will be the same again. We HAVE to take every opportunity we can to help him. It’s just sometimes I would like a break from it all.

We’ve had some problems with the national oral health programme. Not surprising when the simple task of daily teeth brushing is a battle for both children. So now both children have to attend a specialist dentist every six weeks for ‘familiarisation and treatment’. For one of them that means dragging him away from the lift in the waiting room every six weeks. And sometimes that is just another battle that never ends.

It just adds to the myriad of appointments we have anyway; Eye clinics, paediatricians, clinics, home visits, school meetings, training courses, genetics, opticians, and regular GP visits. And unless we want them to have hair like Samson then we have six weekly hairdressers visits too. For most of these we are still struggling to get past the lifts and the automatic doors. Sometimes I could punch the person who invented such things.

I know, I know, this is my life, and I need to get on with it. Lots of folk have it worse. I know that. And I am not depressed. In actual fact I had fun tickling my son and watching lifts with him on his iPad at 4:30am.

It’s just that knowing that this is for life: Autism, genetic conditions, learning difficulties, neurofibromatosis type 1, developmental delay. They are relentless. They put stress on families and make everything seem massive. They add strain to marriages and test the patience of saints. They require more energy than the national grid can provide. They can’t be cured. I can’t walk away.

Forgive me for blogging in a negative way. Please understand I am not feeling sorry for myself. I am exhausted. I am surrounded by battles many of which I may never win.

I now understand why so many marriages struggle when there are children with special needs involved. I know understand why so many parents of children like mine are on anti-depressants. I now understand why so many are begging for respite.

The reason is this: because it never ends.

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8 thoughts on “Because it never ends

  1. There is nothing like a good vent. It is so necessary. I never ever hear in any of your posts that you are negative. You are an amazing person, and yes maybe some have it even tougher than you, but there are many many more who do not.
    I know this was written in the moment so saying one day at a time is unnecessary. Rant, cry, despair and moan all you wish in your posts you need to express it. I have also read here on your blog about the good times.
    I hope in time you can look back and see how far your children have come, and all you have gone through and survived.
    Today I salute you. Even though we’ll never meet your posts always inspire me to be a better mother.

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  2. You’re an amazing person. And from experience I also know autism is an emotional roller coaster. As humans we always punish ourselves from time to time; we look and take ourselves into deep, dark places, or just for one minute we want to forget it all. We vent in different ways. I also feel talking about it helps me, but I do feel sorry for whoever’s listening at times hehe. Those who listen are the best of friends though. I’ve realised in recent years that what keeps me going is the positives, no matter how tiny they are…. they are always there.

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  3. You are such a positive person even when you are trying to sound negative. The reason is you have such faith that you just keep going.

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  4. Hi Miriam, sending you some positive energy and love. Our lives are extremely difficult and it really is fine to let out some of the stress. Tonight we have respite after a very tough 14 nights. We truly need the rest, we truly love our son and we will truly come back stronger. The relentlessness of our roles is overwhelming, we are both on antidepressants and we have our ups and downs, but our love and commitment to each other and our children keeps us keeping on. I can relate so closely to your feelings and everything you say. Your writing helps validate our emotions and know that it is ok. Just wanted you to know that! X

    Liked by 1 person

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