Because it never ends

image image

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.

My little one’s woke up

20131122-222422.jpg

A poem I wanted to share with all my loyal blog fans.

My little one’s woke up, it’s the middle of the night
I want to roll back over, pull the covers up real tight
But he’s screaming and he’s crying, wanting up to play
I’m gonna need a coffee, it’ll be another long day

The telly’s on already, it’s the middle of the night
I need to stay awake so I try with all my might
But he’s gone into the kitchen, wanting things to eat
Did I ever make that coffee before I fell into this seat?

He’s raiding through the fridge, it’s the middle of the night
If I shout at him to stop I’ll wake the baby with a fright
But he’s jumping and he’s flapping, happy as can be
If only he would understand, it’s only half past three!

My little one’s woke up, it’s the middle of the night
My hair’s a mess, my body weary, I know I look a sight
My bleary eyes are drooping, surely it’s not right,
That a child could be so happy in the middle of the night?

So I log on my computer, in the middle of the night
To find so many struggle and I share a common plight
‘Autism doesn’t sleep’ it’s there in black and white
Exhausted parents desperate as they face their daily fight

So spare a thought for families when you have slept all night
When you see them in their jammies, with faces ashen white
If you see them eating dinner but it’s only just gone light
It’s because they ate their breakfast in the middle of the night!

Thank you for your appreciation and understanding 🙂
Love, Miriam x

20131122-222612.jpg
P.S. He certainly wasn’t getting any of those chocolates no matter how tired I was!

I could sleep on a bed of nails

Over the years I have done many jobs and worked long hours. At one point I had 3 different jobs at once cleaning, working for the council and doing catalogue sales 6 days a week. But no job has ever had such demanding hours, such little breaks and as little sleep as being a mum! You take your work on holiday with you too! Yes the perks are fantastic and the rewards amazing but right now I am so seriously sleep deprived I really could sleep on a bed of nails.

The twins attend nursery 5 mornings a week for a few hours. That’s on the days when they can go. There is hardly a week without hospital appointments, clinic appointments, check ups or meetings to attend that require us to have them both out of nursery as we can not guarantee to be home in time for the other one getting out at 11:30. We currently have eye clinics every 8 weeks, the optometrist every 8 weeks , developmental paediatrician every month for Naomi, medical paediatrician every 6 months for Isaac, health visitor visits once a month, social work visits, multi-discipline reviews, speech therapy meetings, school transitions and lots of other meetings and check ups to attend. It is exhausting just writing them never mind attending them all.

Then there’s the phone calls from the nursery, the genetic nurse, the educational psychologist, social worker and whoever else needs to keep up-to-date. It’s only June but already the diary could do with being replaced!

We have our own health to attend to as well as the children’s so I too have hospital and doctors appointments and check ups and prescriptions to collect. And now and again the odd blood test to fit in.

It is all so exhausting. But the most exhausting thing of all is the 24 hour care the children need. Last week Naomi was diagnosed with bowel and bladder problems and she is now on daily medication. It would be easier if it was a simple spoon full like her antibiotics for her ear infection the previous week but this is a dissolve in juice affair and she has to drink it all. Time consuming and stressful to get a four ear old to drink a cup of yucky tasting liquid. Every single day. And everyday the same battle. There is no easy way. At four she still needs dressed and her nappy changed too. And as all children do, she needs our time and attention to grow and thrive. But the most incredible thing about this girl is the fact she sleeps. And until you have to survive on the minutest of sleep you have no idea how much of a blessing that is. She naps during the day too. I mean this girl must have her twin brothers sleep gene too since he seems to have no concept of what sleep even means!

Isaac puts a new meaning to the term demanding. From the minute he is awake (assuming he has slept at all that is)he is high maintenance. He wants and requires a high level of routine including still drinking milk from a baby bottle at 4 and a half (but only ever for mum!). He is fickle, and depending on his mood or the amount of sleep he has had he will refuse all food some days except chocolate or ice lollies. Of course, he can not be allowed to do this so you face him biting you, screaming, hitting and head banging some mornings even before he has his clothes on! This is autism. This is everyday life for more people than you might ever know. It is like walking on eggshells every minute of every day. You are just waiting on the next meltdown. The next high pitched squeal. The next attack on his sister. Frustration, sensory overload and sheer annoyance at not getting his own way cause him to change from a placid settled child to an angry upset physical 4 year old in seconds. And you can not reason with him. You just can’t send him to the naughty step. Shouting and getting angry has no effect on him. Your tears would only make him laugh. But he still has to learn. Despite his disability he has to know that sometimes the answer is NO. Two minutes later he will repeat his action again. And again. And again. Repetition is his ‘thing’ so even if the action appears to have a negative reaction he will still repeat it. So we get bitten and bitten and bitten. You have to give this boy credit for determination though. I mean, if mum has said no to chocolate 6 times you just never know she might just give in on the seventh time. You might just wear her down! He does but I just can not give in.

At church he likes to walk. That’s ok you might think. Except he HAS to hold my hand. And walk up and down in straight lines over and over and over and over. Until my head is dizzy and my feet ache. But he won’t let you stop. Unless you want the entire congregation interrupted by high pitched screaming, yelling and a head banging child. What would you choose? Who needs the gym eh? It’s the same in the garden. I seriously know every minute detail of our garden hedge. My husband missed a branch 3 metres down half way across the top when he was trimming it. I have walked miles up and down that garden. The other day he replaced my hand with a flag. I could have kissed that flag. Although after Isaac has tried eating it and chewing it I think I will give that a miss actually.

You would think with eating everything and anything he would wait for his meals. No. He cries and pulls at you and makes all sorts of upset noises until you have finally cooked that meal and put it in front of him. The despite all the fuss and upset at the waiting he will mix it around, chew and play with it, eat about half to three quarters of it and then lose attention and start putting his hand in YOUR dinner and helping himself. Which rather puts you off your meal somewhat. An hour later and we are back to the screaming, demanding and going into the kitchen wanting food again. Sigh. His latest is opening the fridge, licking things and putting them back in. So have I put you off dinner at mine yet?

Dressing is a problem, nappy changes are a problem, chewing things he isn’t supposed to is a problem, trying to escape out the house is a problem, constantly wanting to access water is a problem, and did I say he doesn’t sleep? Oh he has no trouble wanting to go to bed but actually sleeping, well that is another thing altogether! A good night would be 5 hours sleep. But not always altogether. Where’s the fun in that?

These children bring me joy unimaginable. Their every achievement, every new milestone reached brings me to tears of pride and joy. The love I have for them can not be quantified. The lengths I would go to help and support them knows no boundaries. I think about them, pray for them, dream about them (in the few hours sleep I get) and want to spend my time with them. But I have to be honest. And I am exhausted. I could honestly sleep on a bed of nails…but I need to get Isaac to go to sleep first!

Even God had a day of rest you know!

smiling Naomi

garden Trying to eat the garden flowers!

fridge licking the contents of the fridge

flag I was exchanged for a flag…Thank goodness!

cereal Even breakfast is not a simple affair!