Everybody loves cake wether it’s chocolate, lemon or Victoria sponge. Whats yours? personally I am partial to a slice of lemon cake. So the all important question is going to be do you want tea or coffee with your cake?
On February 11th 2016 the Family Fund are organising a huge Tea Party involving people across the country. We are raising funds so that the Family Fund can help even more families across the uk.
The Family Fund even though they are funded by uk government, private donations etc still need and rely on the great fundraising efforts made by countless people. The Tea Party is just one way that you could help at home or at work.
Firstly what is the family fund I hear you say…. well its an organisation that
Since 1973 has helped thousands of families who are raising a disabled or seriously ill child
One of the uk’s biggest charities
Providing grants for items that could benefit families like washing machines, bedding, clothing, sensory toys, family breaks
By providing a wealth of information to families on other help and services that are/could be available to them locally,regionally or nationally
Families who raise a disabled child have many challenges. Some more so than others. We juggle hospital appointments, pay for childcare or after school/breakfast clubs so that we can make appointment times on time. Those of us who work have to sometimes take unpaid days off to attend appointments. We parents administer medication, we care for our children as a parent and as a carer.
The family fund was introduced to us two years ago by our sensory support teacher of the deaf. At the time we were struggling emotionally as a family with a lot of ups and downs. The family fund has a wealth of information but most of all as a family we have benefitted immensely from this amazing charity. We were lucky enough this year to be one of the 72,000 families that the family fund helped. We needed a new bigger washing machine. Due to mediation at night-time our daughter has nights of wet bedding. Our old machine was not coping and we were having to sometimes go elsewhere to get the quilts washed. A new larger washing machine which we can fit a singled sized quilt into wash has been a god send. Find out more at http://www.familyfund.org.uk
I along with countless others will be hosting my very own Tea Party at home with friends and family…. So raise your cuppa and eat your cake and donate. Join us in helping to make a difference.
Have you ever seen the film Groundhog Day with Bill Murrey? He repeats the same day over and over again. Having a child with ADD/ADHD can sometimes feel just like this. It doesn’t matter if you have things planned in advance or spur of the moment, without the cooperation of your children it’s useless. It can seem like there is no end in sight when everyday is full of the same arguements, upsets ect. I like most of you am not a specialist. I don’t have a degree or training to deal with ADD but it’s amazing how we all as parents try to cope and do our best for our children and our families. So before I set of on this blog I want all of you wether raising a child with any disability or not to take a deep breath and believe in yourself. Take heart knowing you are not alone.
ADD is not a ‘naughty child’ condition. For those suffering and their families it is very real. Yes the behaviour is a big part. Our daughter can have tantrums and periods of throwing things about in anger, but there is more to ADD than most people think. As a parent I find it hard that most people just assume my child is naughty. I even now get embarrassed sometimes as before diagnosis I was one of those people who didn’t understand what ADD is. I didn’t even know what it was.
So some of the other less known but sometimes more challenging symptoms involved are;
Short attention span
Can’t sit still and fidgets
Can’t finish things
So for us as a family and me as a mum one of the symptoms of ADD which affects our family sometimes more than the other symptoms is forgetfulness.(www.livingwithadhd.co.uk)
For us with our 9 year old this is a very real issue. Firstly it is devastating when faced with the fact that aged 9 our child can not remember certain things. She forgets to go to the toilet, she forgets what she has eaten, she forgets the rules of games learned in school, she forgets lessons taught in school. It’s very hard. We as a society expect forgetfulness to come with age not with childhood. This is in effect memory loss. It has a huge impact on our family as an overall entity. For our daughter I can honestly say I don’t think she even notices except for when it is obvious that she has forgotten something because it is brought to her attention she then becomes upset. She has always been this way. It is not learnt behaviour for her, she is not being awkward.
For her the difficult part of this forgetfulness is when friends get upset or annoyed that she can’t play a game she played the day before as she forgets the rules. She doesn’t like upsetting people. Also if she misplaces something and really wants it she can become angry and upset and scream and shout and sometimes become violent because no matter how hard she tries she just can not remember. She will very often shout and cry about her ‘stupid hd’ as she calls it.
For me on a bad day my daughters forgetfulness is;
frustrating; I am not frustrated at her herself but at this ‘condition’ that effects every aspect of our lives,and YES it affects us all. If (L) forgets where her gloves are or another item she needs for school it can make us all late for the school run, if she forgets to do something before going out there is no way we can go out until she has done it as it would just cause to much upset. She like any child will play tricks on her sisters, the downside is if she hides something she can forget where she put it,this then causes sibling arguments.
Anger and blame; again this is in no way directed at my daughter. I could and never would feel anger towards her in regards to the ADHD. As a parent when she does the ‘normal’ naughty things then that’s a whole different kettle of fish and as any parent would this can cause me to be mad at her. For me I feel anger towards myself and towards the condition itself. People say don’t blame yourself. There are possibly many different causes of ADHD. Some researches suggest anything from something in the genes to the pregnancy and birth or biological factors, but as yet there is no one cause or reason. Even so as a parent how do you not blame yourself. I have to try hard though as if I blame myself my husband then also blames himself which to me seems silly. I carried her for 9 months, gave birth to her are not the chances higher that it would be my fault??? I wish with all my heart that she didn’t have anything wrong. I hate that she loses items. I get angry that she forgets what she has eaten, what she has done at school that day or the day before. I feel angry that she has to get upset days after something has happened at home or school because she only just remembered to tell me. I find personally the anger at the condition doesn’t fade. Some days it’s just worse than others.
Sadness; How do you feel? I feel sad. Not just sometimes but maybe once or twice a day. I don’t cry as much as the years go by as this does not help my daughter. I look at her and feel sadness at the time she loses. She recalls things that happened a year ago but forgets what’s happened this week. I feel sadness Of the upset and stress it causes her when she can not remember something. School and learning have been a huge stumbling block for my daughter. She is so determined to learn and by the end of a day she knows something by heart and races out of school to tell me only to forget it the next day. Learning lines for a service or play breaks my heart. Her face beams when she can say them of by heart but she has to put so much time and effort into learning them she then crashes physically and mentally from the effort.
Guilt; carrying on from the sadness point I feel guilt most days. I think as a parent this is a common feeling. Do you feel guilt? How would you answer when asked ‘why do you feel guilty?’ We are told by specialists that it’s not our fault. We are told by friends and family it’s not our fault, but with ADHD how do we deal with this not knowing. Not knowing what’s caused it, not knowing if we had done something different would the outcome have been different? As a parent this feeling is hard. But as a parent of a child with ADHD if I spend everyday concentrating on feeling guilty how am I helping my daughter. I need to be strong. She needs to know that it is not her fault. So I try to not blame myself on a daily basis but instead channel that emotion into something positive.
On a good day
Pride; I am so proud of my daughter. To be faced with such an obstacle in life towards growing and learning she has so much enthusiasm and such a zest for life. She tries her hardest always even to the point of becoming exhausted. She tries to cover the forgetfulness and never says she can’t do anything. It isn’t an excuse for her or for us.
Love and laughter; we by no means as people who know us know make any jokes or jest about our daughters forgetfulness. We surround all our children with love and laughter. Some days we do laugh about items that have gone missing. These days turn into family hunt the item days. There is no getting away from this forgetfulness but we can try and make life the best we can.
Awe; I love this word. It describes perfectly how I feel inregards to my daughters unwavering energy and how she tries so hard. I look at her when she is sleeping and I am so in awe of her. She tries so hard to never let anyone down.
As a society we are becoming more and more aware of ADD/ADHD. Studies are being carried out, research also, but as a parent I feel more needs to be done to help us as parents. There is no right or wrong way to raise our children. Most of the time I feel it’s trial and error, but hopefully we shall get there one day. If anyone wants to do any research or find information to print of for other family members and friends, school to help explain ADD I have come across a couple of sites that may be of interest to other parents.
Parenting is a hard full time job. Theres ups and downs joy and sadness. We take on this role knowing that it won’t be easy. Its an emotional, physical and financial role. Most people take for granted that they will be gifted with a healthy child or children that they will nurture and watch them grow up into happy healthy individuals. Sometimes though that is not what happens and for some this isn’t the case. What would you do if you were suddenly faced with a disability? how would you feel if suddenly faced with the prospect of raising a child with additional needs?
Firstly what does disabled mean? if you google it lots of different names and meanings come to the fore. It can be mental, physical, emotional, sensory or developmental. Just because you see someone walking around does not mean that they do not have a disability. For me the sensori neural hearing loss that three of my daughters were diagnosed with was a much easier disability than the later diagnosis of one child with ADHD. This was due to the fact that the children were prescribed hearing aids which are a constant reminder and a visual key to there being some kind of hearing loss. This is not the case with ADHD. ADHD is not an outward disability. Many parents suffer in silence not knowing that their child could indeed have ADHD. Theres a lot of information out in the world. In my opinion its a mixed bag of good advice and bad. My personal experience has been not to google ADHD but to speak to the healthcare professionals involved with your child. For us ADHD took along time to diagnose, 4 years in fact.In this time there were lots of appointments and charts and observations completed.
As a parent already coping with hearing loss you would think that having another diagnosis of yet another disability would not have come as a great shock. You are wrong. I had gotten use to hearing aids and working them, looking after them and never really saw myself in the carer role. When our child was diagnosed with ADHD I felt I was suddenly cast in the role of a carer. The desire to do the best for my daughter was all consuming. There was medication to dispense, appointments to keep, forms to fill in, schools and other healthcare professionals to liaise with. At times i felt more carer than mum. My own emotional and physical needs went on the back burner.
For many parents like myself its a dark, lonely place. Family and friends don’t understand. You feel guilty asking others for help as you brought this child into the world and you feel its your responsibility to do everything without help. You stop going out due to the fear of embarrassment and the danger that accompanies ADHD sufferers. Having a child that has no awareness of the dangers around them or who can run of at any point and not find their way back is a big inducement to just stay home.
You don’t take the time to relax as your always on the alert. For me the hardest thing is that my child has so much energy and is constantly on the go from when she wakes at 4am until she goes to sleep at 7pm. Trying to keep the peace in our house is really hard especially with four girls.
Another massive effect on your life as a parent/carer is that you become ill. I felt sick most days. I comfort ate so that my weight ballooned. I had no energy and I was on the downward spiral into becoming depressed. I started smoking outside so that I could get away for a few minutes. All of this lead me to feeling very alone and sad.
If like us you are in a relationship this can suffer badly.You become carers, co-inhabiters of the same house but unable to keep any other attachment. You fight and argue all the time taking out your frustrations on each other. Then you start to work in shift patterns until eventually one of you seeks warmth and kindness elsewhere. It isn’t until something really profound like that happens that you start to question your ability to cope and the biggest personal realisation is that we were not coping. We stopped talking. We were not there for each other on an emotional level. People around us could see what was happening but we became so wrapped up in caring for the children we didn’t notice.
After my marriage breakdown I was forced to realise that while looking after four children on my own I was stronger than i thought i was. I realised that I could cope and that I wasn’t a failure. Somewhere along the way I found a confidence in myself. We corrected our mistakes and decided to work on our marriage. The biggest change here was making time for each other which meant letting go of the dark lonely place and coming into the light, to realise that we are both stronger together as a team and that we can be both parents and carers but most of all be a family.
Looking after your own needs when you have a disabled child is in my opinion the most important thing you can do for yourself and your family. How can you be there emotionally and physically for your child/children if you don’t look after yourself?
I started a course in holistic massage and got myself out into the world. I realised that I had an amazing support network that believed in me. Family were there every step of the way and for some it allowed them to see what we were dealing with. I also have the most amazing best friend and group of friends.They don’t judge me and they take the time to listen and ask questions. We have a laugh and have girlie nights out which means time out for me and a recharge of my batteries.
You don’t have to go out! find time for a coffee and a biscuit, watch a film or read a book. Make an effort for some ME time.
To read more see other blogs or feel free to contact me. Sometime just talking can help. x leanne x