ADD; a run for the hills combination????

It was my daughters 10th birthday last week and for months in advance she had been begging to have a sleep over. Now sadly my daughter is one of those that does not get invited to many sleep overs / birthday parties. Wether its because she is not as popular at school as we are lead to believe or that parents knowing that she has “issues” just do not invite her, so baring this in mind and also in my new stance of trying to let her do as many normal things as possible (as I have let her sisters have sleep overs) and having the mind set that her disabilities should not hold her back, I eventually agreed to have a small number of friends who know her really well to stay over.

IMG_1135
the birthday girl

well…..

This was written at 2.45am the night of her sleepover…..

birthday sleep over and ADD; a run for the hills combination. over wrought over tired over excited every emotion going heightened and out of control when it gets to 2am and no sign of sleep what do you do

the only thing you can do so the guests can sleep is to move your ADD child and try and get them to calm and sleep back in their own bed

easy yes…. in our case its been 45 minutes and she has trashed her room screaming and swearing not a good combination especially as when she finally falls asleep she will wake up having forgotten what she has done.

I have come to the very stark realisation that even age 10 there are going to be limitations on what I can and can’t do with my daughter. For all that I want her to lead a normal life I have to accept that in some situations that is not going to happen. There is going to be times when I can’t let her have the independence she sees her sisters having. Having three so close in age (13 and 18 months between them) I really see the differences that disabilities have on my child. Its heart breaking!! I don’t want her to miss out!!!

These are the things they don’t tell us even when you get a diagnosis.

ADD is as much a learning curb as it is a disability. They tell us about the behaviours to expect, the drugs that can be used to help, parent courses to go on and so on. At the end of the day though there is no step by step guide to how to parent a child with ADD. Theres no written list of the do’s and don’ts. There is information on the symptoms and it is widely documented about all the bad disruptive parts of ADD and ADHD but alas I have yet to find a comprehensive manual or list that guides me through everyday life with my child. (will be waiting a lifetime as no two children/adults are the same)

img_6845
The girls

Very often I feel alone and alienated. Very often I feel like its all in my imagination, that surly she is not as bad as all that. I feel embarrassment… does that make me a bad mother? How hard can it be to throw your child a simple sleep over party when they are all the rage and everyone else is having them…surely her behaviour is no different to how it was when she was little except she is stronger, faster and when an object comes towards you it hurts. The screaming hasn’t gotten any louder, having sensorineural hearing loss on top has meant she has always been louder than her hearing sister. I can handle anything she throws at me…mentally and physically can’t I?

The thing is it has all changed. Disruptive behaviour at home or in the street wasn’t acceptable when she was little but up to age 6 she could be put in a pushchair or put on reins at least until she grew to big. Now when people see a tall 10 year old exhibiting behavioural problems they mutter and shake their heads. Heck I mutter and shake my head while inside I am fuming because I sometimes forget that she has this ‘illness’ and that she can’t help it but because I want her to be as normal as possible I do sometimes forget for a second that she is different, and yes as her mother I can say she is different because there is no way of getting away from it. She is unlike my other three daughters. Each different in their own way but so alarmingly different to their sister. If I was a bad parent surely they would all be like her?

So the sleepover…..

My daughters friends have sleep overs and maybe giggle the next time they are in school about how late they went to sleep but for us it was no giggle. The girls who stayed accept our daughter for who she is but even they struggled with her not being able to sleep. I felt pride at the way they tried to help her but in the end we had to remove her otherwise none of them would have slept. I had even tried to keep some of her routine at a much later bedtime and read to them plus she had her sleep medication but as mentioned, excited and anxiety played apart in making sleep disappear, we were left with running up and downstairs, shouting and screaming. I felt bad as a mother for taking her upstairs, making her sleep apart from her friends but when you are a household of 6, attached to another house sleep is very much needed by all. Needless to say the friends were asleep within 10 minutes of us removing her and didn’t wake till 9am the next morning.

IMG_6332

As for our daughter after she was spent from her tantrum she spent the rest of the night in our bed. She was very comfy!!! Me however spent time thinking and crying and wondering how much more we will come up against in the fight to give our daughter the chances and opportunities she deserves. Then again as parents thats what we do isn’t it? We give our children opportunities to grow and learn and we as parents also grow and learn. We learn the best way for us to cope / deal / parent our children. Its a huge learning curb being a parent and its a huge learning curb living with ADD. As the years go on no doubt I will learn more not only about ADD but also about myself and my family and especially about what our daughter will be able to achieve.

All I can say is never stop trying. There will always be good days and bad days, thats being a parent and we don’t always get it right. When it goes wrong cry, stamp your feet and let out the frustration and then start again fresh and new the next day. ADD for me is either a good day, a bad day or its sometimes like groundhog day…..

 

Take  care

x Leanne x

Just another day with ADD

The last few weeks have been ‘one of those weeks’ over and over. On top of normal family life, working, school changes, holiday plans having to also care for my daughter with ADD and additional needs has meant the weeks have sailed by and seems to be getting on top of me. Being a mum is a full time job sometimes I wonder how the hell I do it without falling apart……

One thing I think is true of parents who raise children with special needs and disabilities is the constant effort to do what is best for your child and sometimes these decisions can upset the normal routines and daily life. We recently took the decision to move our daughter to a school closer to us. I had been ferrying my children 26 miles in total per day to and from their current school. Add in the stress of trying to get out of the door this just isn’t working anymore the older my daughter gets. All of a sudden she is turning 10 and with this seems to be a huge shift in the size of arguments and stress. If anything in the morning routine goes wrong and I mean anything even the smallest thing then the whole school run turns into a battle of wills. Anyone relate?

It’s hers  against mine. It’s time consuming and energy zapping. Having lived so long with her in her shell, in fact I would call it a bubble in a morning she has now come to the age where she is aware of how she is different and how her behaviour can in some cases get her what she wants. Normal pre-teen behaviour I hear you say…. But it’s so much more than that. I have never known anyone who can dig their heels in so far over the smallest of things. I don’t understand it and it makes me frustrated. Be it shoes, breakfast choices, to who is sitting where in the car 😡  ADD is certainly teaching me a lot as the months, years go on. 

Even with 7 seats theres always an arguemnet

No one child is ever the same and I think that is certainly true with children who have ADD. Every child has their own quirks, breaking points, triggers. No one child has the same symptoms but an array of them making them unique. We as parents have to learn how to adapt to take care of these children. My daughter at least for me has a sort of switch between a Jekyll and Hyde that’s running on fast forward. This is increasing more apparent now for me than it ever was. She does not stop!!! Constantly flipping from one thing to another, if someone has something different she then decides she wants it and will just take it. Sibling rivalry is at its best in our house as her sister compete to keep their toys, phones and even food. I have mentioned before the ‘egg shell’ state I sometimes find myself in just to keep the peace and to try and limit the stress that behaviour associated with ADD can cause. 

There’s also the other elements of ADD like the memory problems that for me cause me the most headaches and moments of sheer annoyance and anger. I struggle as I am really an organised person to understand some days why my child forgets. Other days I feel sad for the things she looses and events she doesn’t understand as she has forgotten them. So Yes anger…. It’s there. Just because I am a parent does not mean that I don’t feel frustration and anger. I try not to openly vent in front of or at my children but it is difficult. I struggle with myself over wether I should feel this emotion and also think where it actually originates.

  •  Is it anger at myself for the way I parent? 
  • Is it anger at my child for the way she behaves? 
  • Is it born of a frustration that people who have not experienced ADD can become so judgemental and blasé about my child’s behaviour? 
  • Is it the never ending struggle to get and do the best for my child? 

Well actually it’s a little of all those things. As a parent of disabled children I feel I should be well versed in how to look after them and their needs. Mostly this is not the case some days I feel lonely and scared of what the future may bring. A diagnosis of anything is no picnic and is never a simple cut and dry case. I do feel anger at myself. I do blame myself as a parent for the way my children are. It’s not my fault I know but some days when feeling low in myself it is easy to play the blame game.We parents put ourselves through so much. We tackle parenthood head on and do everything we can to make sure our babies grow and thrive. A mothers intuition is often something we rely on and for me at least it’s always been right. The day we parents get our children’s diagnosises can be the worst. For me being told my daughter had hearing loss at 2 and ADD at 7 were days that I don’t really remember much about. They are lost to me in a haze all I remember doing is crying and then getting on and parenting as best as I could. Yes there’s help available but here we seem to have to fight for most of it, there’s information abound on the internet but it takes some searching to find reputable, helpful non scary information.  

For parents starting out on their journey with a disability I would say

  • Grill your paediatricians, doctors, sensory support for as much information as you can📚
  • Try and have a list of questions when you go to appointments in case you forget to ask something that has been bugging you. Type them in your phone or not them down as and when you think of them. It’s hard to keep on top of them I know but it could make a difference.
  • Take each day as it comes, there will be good and bad days you have to accept this and it’s hard, really hard!!!!
  • With ADD pick your battles….this is a really hard one to do, you feel you can’t give in all the time as it’s not fair and naughty behaviour does need to be kept in check but how do you do it when their memory is affected and they have already flitted to the next thing?
  • Take some me time!!!! It’s hard but having some down time wether it’s a walk, going out or getting lost in a book we need to try and do something for ourselves and recharge our batteries. I tried for so long just to get on and be a parent but eventually realised it does not make me a bad mother to say help I need some rest and relaxation!!!
  • Don’t be afraid to ask for help….again another difficult one especially when faced with people who do not understand your child’s behaviours and needs but on the flip side if we do not give them that chance to interact and experience it themselves how are they ever going to understand

At the end of the day remember we are super Mums and super Dads. In the eyes of our children we are their superheroes no matter what the days, months and years ahead bring. For all the love in the world raising our children to be loved and accepted is in my view what it’s all about. Yes I get angry and frustrated but the milestones my children complete and the characters they are will never ever make me think for one second that I wish life had been different. Our children are who they are and we have this amazing job  ❤️


from my daughter # soproud

Please feel free to get in touch, enjoy the sunshine ☀️

Xx Leanne xx

http://www.marshamholistictherapy.co.uk