You, Me and ADHD

 

Putting my hand up in class….no way
Going up on a stage to preform….not me
Talking to people I don’t know…is there anything worse
Feeling out of depth in new situations…yep me

 

This use to be me and I bet its a lot of other people out there too. I had the confidence of a gnat growing up and into my early adulthood, and even then I think a gnat would have slightly more. I use to be shy, hated talking to people I didn’t know, would always be the one on the edge of the group, nodding and smiling wishing I was anywhere but. Having children at first didn’t change this. Yes I went to toddler group’s but made sure I went with someone I knew. I hated going to the weigh in clinic and I never asked question’s and I just did what I was told.


To be told that your child has a disability, special need’s and needs regular check up’s, investigations and so forth didn’t really change how meeting new people made me feel. I hated every appointment in the beginning, would nod my head and give permission but it was like there was someone else inside me answering. I would get butterflies on the way to the hospital for hearing check up’s and get myself all worked up, I would sweat, feel sick and then I would break down on the way home, disappointed in myself as there were questions I wanted to ask and I was too afraid to ask them.

For me I realised that this had to change, that I had to become the carer and voice that my children needed me to be. My daughter was 2 when she was formally diagnosed with a hearing loss and 7 when she was diagnosed ADHD. A big change in my confidence, and strength levels was needed.


I started by accessing online forum’s, talking to people online started to give me the confidence to get the answer’s I needed from the people we were dealing with in our daughter’s care. Being on a forum also gave me confidence to talk to people about my experiences and also to offer advice to those just starting out on their journey with parenting a child with disabilities.

One big recommendation would be to have a note pad and pen and jot things down that the doctors and specialist’s say in case you want to research them and keep that notepad in your handbag, coat pocket so that if you think of anything you can then remember to ask at the next appointment. Its easy to forget long words and to in some cases zone out when you are given news to process, and having to wait weeks for the write up letter to come through so you can remember can sometimes put you on edge.

I had to dig down deep but I decided that I needed to put my children first instead of my own discomfort at talking to people. I became my daughter’s advocate, her voice in a world where adult’s make nearly every decision for her. My confidence does still waver from time to time but I remember that I am doing it for these four amazing girls who are all looking to me to be their role model and for the families who are diagnosed daily and are placed in the same position I was …no way am I letting them down.


If you want to know more, please do follow our blog at http://www.leannesihm.wordpress.com

 

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You, Me and ADHD

So your given a diagnosis of ADHD or ADD or any other variant, your sent home with a box of medication, and told you’ll be sent an appointment for a review in 6 months……WHAT NOW???


Well first of you’ll be exhausted from managing your child’s symptoms, having regular appointment’s, assessments, trips to the hospital’s and you’ll be feeling pretty crap. You’ll also be feeling like a complete and utter failure as a parent all the while trying to keep your child from imploding, your relationship and family life on the straight and narrow and did I mention wondering what the hell you do now?

For me I went on auto pilot, I did what needed to be done at home, I tried to be there as a wife and a mother, I tried to hold down a job but I ended up letting some of the balls drop.

  • I took my children to their appointments, I cared for them, loved them no matter what but felt annoyed at times, lost my temper with them and was stressed out
  • My husband and I drifted apart, I would take all my anger and frustration out on him, we shouted and argued and he eventually went and found someone else that would give him time
  • I took myself away from family and friends while I tried to deal with the symptom’s and the ever increasing feeling of guilt about medication my daughter worried about what they would think and feel
  • I gave up work, being able to talk to other adults about grown up non Homelife topics

What I want every parent out there to know is that there is no shame in dropping a ball!!! Any parent who has children can at times feel stressed out, unhappy about their lives and the way that having children can feel like the very life is being sucked out of you. Thats normal, and its especially normal to feel that way when we have disabled children. To many parent’s do not give themselves a break, we deal with so much when caring for a disabled child no matter what the diagnosis is. Some parent’s I know go through so much more than I do and I am in such awe of them that it gives me the strength to do my best for my own children.


Living with hearing loss is annoying when you can’t hear yourself think, it gives you a sore throat shouting louder than normal so they know I am angry, its fiddly trying to replace small part’s on hearing aids and when the kids are younger I could have had a dozen heart attacks thinking they had swallowed batteries but its manageable. We learn and adapt just like our children learn to adapt to a world where one sense isn’t working like it should.

Living with ADHD is harder. Its an invisible diagnosis which to many people still see as just a naughty child or down to bad parenting. Trust me when you have had a bad day anyway and someone suggest’s your parenting skills may be whats wrong…you do not want to be near me. The grown up thing to do would be to say “ok its my parenting so why does only one child out of four have the symptoms” my childish side just wants to bop them on the noise…. and another horrible word that has been associated with my child….spoilt!! spoilt my arse, I do not spoil my children and I hate that even in todays society people still can not accept that ADHD exist’s. Hello its been documented since the 1700’s!!!

So here’s a little checklist from me to you

  • Give yourself a break, take Time to digest the diagnosis
  • talk to somebody either a professional or someone that is in the same boat as you, swap tips and advice
  • research – there are some really good websites/groups and forum’s about with people in the same place as you
  • don’t cut out family and friends – you really will learn the power of friendship and know the love of family when you have a child diagnosed, they need you as much as you need them, talk, ask for help or even just a hug

To find out more about You , Me And ADHD, follow our blog

xx Leanne XX

 

Massage and sleep

Does massage encourage sleep?

We were those parents who struggled nightly with trying to get our daughter to sleep. Facing the tantrums, the tears, the heart wrenching sobbing and the ear splitting screams. We faced the ever depresssing ebb and flow of emotions from anger to frustration to just total exhaustion. 

Bedtime hygiene……

As a parent I submitted to the specialists and did everything that they told me to do….religiously 

  • No computers, TV, games console, phone, or any other electronic device
  • Black out blinds
  • No night lights 
  • Same bedtime hour
  • Soothing baths, bedtime strories, classical music, snacks, drinks 
  • Medication


I went on sleep courses where I felt like a failure as the rules never seemed to apply to my daughter. It became frustrating and to be honest I stopped going as nothing was making any difference. Our daughter was stressed out and so was I. 

Next step…

Late one night while my daughter was still trying to go to sleep I was googling for help and advice. Firstly what strikes me is that a lot of the research and information available is based on studies in America. While speaking to parents over the years sleep problems are a significant issue here in Britain so why are the specialists here not better able to help us. Why are we given medication and told to get on with it? Why are we told to attend courses to teach us what we are already doing? When will doctors accept that for some children sleep is a real medical issue and not parents making up symptoms in the hopes of a quick cure to make our lives better??

While researching one sleep deprived, weary night I came across mentions of massage. This is something that I had never considered before but having come out the other side of relationship problems, feeling insecure but determined with the thought of doing something for myself appealing I booked onto an Indian Head massage course. 

My Nephew enjoying 5 minutes of massage

The course took 3 months to complete and with my daughters permission I used her as a case study. Well wow from the very first massage move my daughter was a little less tense, a little less stressed and that night along with her medication she went to bed and actually slept. Well like you I thought it was a fluke but as the course progressed and my skills became more fluent and skilled we noticed a big diffrence in bedtimes. 

Don’t get me wrong massage is not a cure, sometimes it will work but others it won’t. The biggest thing for me is that it encourages the bond between me and my daughter. It’s time that we can spend together, relaxing. Massage also helps to relax me which in turn has a positive effect on my daughter. You see if I am angry and stressed she bounces off that, once I calm down I have noticed she does too. 

How can I use massage at home….


Massage does not mean that you have to go and train. A massage could be a back rub, twirling hair at bedtime, it’s about positive touch. For those who would like a bit more structure then I recommend story massage. You can learn 10 simple massage moves that you can use with any song, story, rhyme and can be used anytime anywhere not just at bedtime. We use storey massage all the time from camping to the doctors. Massage can help reduce tension and stress, can help to calm and refocus and with the story massage you can have fun with your children creating massage stories and….

Best of all mums and dads your children can share a massage with you!!!

If you would like to find out more or just wants chat please do contact me

Xx Leanne xx

What an ADHD week…..SATS, Family and weekends

So before you start reading a warning, my head is feeling disjointed, please be aware may contain rambling…….

I find more often than not when I come to a Saturday I feel so tired I tend to do nothing if I can help it. It’s not that I am feeling low or depressed but after a week of being on the edge and the whole family tethering on the edge it’s nice to just kick back, watch rubbish on TV, baking and eating cake, enjoy the sunshine in the garden and just not to think about anything isn’t it?


Not possible when you have children and definitely not when those children have disabilities. You see their needs overtake everything. People looking in from the outside do not see. When your child has an unseen difficulty or disability it can be hard for them to understand what they can’t see. Yes I moan to friends and family generally because we have been caught out and they have seen how life can be, I am not ashamed of my child’s behaviour she can’t help it, but I sometimes feel powerless to help her. There is no respite, no down time and at weekends I find myself trying to snatch moments in the day where I can either slob out, breathe a few quick breathes or just try and empty my mind. Weekends are family time, time to be together with no real plans. NO!!! Really it just means Daddy is at home to help……..Going with the flow we try not have anything planned on a Saturday and Sunday which is not always easy as life steps in. 

After this week we need a weekend to just breathe and not do anything. The SATS as predicted caused stress and tension, tears and anger, frustration, sleepless nights. When you add in the build up the SATs seem to overtake everything for us from Easter onwards. Now that they are over there is a visual reduction in the amount of tension my daughter with ADHD is holding. She seems more relaxed and more able to focus on everyday tasks. Something she has been unable to do for the last week. Even just being asked to brush her teeth has caused an arguement because it’s something else I have tried to add into her already stressed out Day. The SATs have:

  • Resulted in tears and upset
  • Feelings of failure and that she is not good enough
  • Disruption of routine
  • Short frayed temper
  • Meltdowns at the end of the day
  • Bad dreams

This is on top of the regular feelings that are associated I feel at any age with taking tests and wanting to do your best. Just because my daughter has disabilities and difficulties does not mean that she didn’t want to do the best she could because that added even more pressure. She wanted to join in with the year 6’s, she wanted to do the tests, she wanted to do her best and make me proud. She makes me proud everyday, all of my children make me proud they all do their best and even my older two have had exams in high school and I am proud of their attitude and just generally a very proud mummy. I could ask that they work harder, I could ask that they concentrate better, achieve more but I feel with so much outside pressure they need the time to also just be children. I feel my job is to teach them life skills, to help them feel part of the family, to look after their health, wellbeing and happiness. School is there to teach them academics and while yes we read, I make sure their homework is done and I help them with revision I don’t want it to overtake important family time especially as I already have feelings of guilt about how my other children cope with their sibling. I worry about how me as a mum trying to deal with Hearing loss and ADHD effects the dynamics within my little family:

  • If I shout I have to shout louder if they don’t have their hearing aids in as otherwise all I get is “what?” About 110 times this just makes me a loud crazy mum
  • I feel like I am always referring arguements, and I don’t get it right and get accused of taking side which I try not to
  • I feel shattered by 9am mentally exhausted spending an hour solving disputes and arguments between the kids. Usually I have a least one storm out of the house.
  • The end of school comes and I drag my feet to school for pick up, most days I am already in a bad mood as I naturally start to anticipate the basic hell on earth if my daughter has had a bad day
  • When I feel low we eat more crap food because I can’t be bothered either that or we run out of food in the house bad bad mother


So here I sit with some old Doris day film on the tv, one daughter out on camp for the weekend, the other sat next to me while Dad helps with the younger two trying to keep them entertained while trying to cope with the effects of having no routine as it’s the weekend. Who ever said having children was easy

Take care 

X Leanne X

Routine….Where’s the Spontaneity in That?

Routines

Routine for us as a family is the basically the difference between a good day and a bad day.  There is no flexibility, there is no common ground, its the routine or the highway as far as I am concerned.

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Helping to cook encourages eating

Routine is such an important part of my daughter’s life, from the way she sets about her morning to how she copes with planned events, holidays and general everyday life. Without a routine my daughter can be left feeling bereft and disjointed in an already confusing and sometimes overwhelming world that she lives in. Being able to do anything in a way that helps her to stay connected to the rest of the family can mean the difference between her being happy and contented to being frustrated and generally unable to cope. Trying to balance this need for routine with three other children can at times cause strife and I am on lots of occasions accused of favouritism, but this is not the case. As children they do not see the struggle it is to try and keep everyone on an even keel. Having your life to an extent ruled by routine is difficult and frustrating but having a daughter with ADHD means she struggles with memory problems, impulsiveness, concentration and being able to adhere to a routine can mean the difference between her being able to function or having that meltdown that all parents dread.

In some form or another we all have a routine of some kind in our daily lives. From how we get ready for the day to how we move through it and how we end it. For me routine starts when I open my eyes getting my self ready and the girls all ready for the day ahead takes the same form everyday

  • wake up then wake the girls up
  • washed and dressed
  • breakfast
  • hearing aids in, hair brushed
  • coat and shoes on bags on

If I have managed to get the children all ready to go by 8.20am its a good day and means that having a routine in place has worked even if for me it feel’s like I have crammed a weeks worth of stress into 2 hours.
Never let it be said that the job of a mum or dad is easy. First thing in the morning until the children are all safely behind the school doors is the most stressful time of my day. Four children each trying to go about their own varying routines while co habituating in a small house brings that sense of cold fear when I open my eyes. There are days when I just want to bury myself under the duvet and pretend that I have no responsibilities, no reason to wake up and get going.
Having a young family is not all plain sailing even when you have great well thought, well meaning routines in place. This is never more apparent than in the school holidays. The effects of not having a routine during holiday’s is amplified because my daughter with ADHD relies so heavily on a routine and of course when there is no school day which is structured this can cause Anxiety and panic, a whole lot of shouting, fighting and stress for the children as well as me. How do I cope erm lets say on a bad day I don’t, I struggle hugely to get the motivation to carry out the same routine over and over. Its like my favourite old saying of “ground hog day” over and over. Everyday has to start and finish in the same way. It drives me crazy sometimes, wishing that for just once we could do something spontaneous.

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Not at all Happy at being took out

So basically for me routine is the difference in being a crazy, out of control frayed round the edges mum to a semi calm and collected mum who after a strong cup of coffee and 5 minutes of quiet is ready to face the day after the school run. Until the end of the day that is. I love being a mum, I thrive on their happiness, watching them grow and learn and if I have to live with routines then so be it.

XX Leanne XX

A day out, an Uneasy mumsy Prospect ADHD -Anxiety 

As a parent you would be well versed in the art of preparing for a day out with the family or friends. What happens though and how do you prepare for a day out with a disabled child. For me by the time I get where we are going I look like a haggled miserable cow which can make me cranky so apologies in advance if ever I meet you on a day out…….

Feeding the swans, my heart was in mouth though

For me I find planning a day out really hard. Although our daughter is nearly 11 there is so much to think about

  • What time are we going, do we have hearing aids, are we dressed…I don’t know about your children but mine are typical slouch around until the last minute and then panic stations to get dressed. I usually get L motivated by having a race to see who can get dressed the quickest…I win most days 😊
  • Will she cope with where we are going…..Proberly not but perseverance is the key mum’s and dad’s!!! Keep repeating and try not to give in as if you have other children it’s not fair on them. This is hard but I use to give in all the time till my eldest said that I always changed the plans just because of L. Made me stop and think
  • How expensive is the day out? You see if I pay say £50 to get me and 4 children into an attraction how long will we manage to stay an hour, 2 hours? I tend to find free or very cheap but fun places like Redwings horse Sanctuary. 
  • What do I need to take… Soft toy, fiddle toys, baby wipes, snacks and drinks usually grace my rucksack…I gave up with having handbags as they became so heavy a good pretty rucksack to hide all the bits and bobs plus baby wipes and drinks and snacks for you as well as your children.
  • How far away is the destination…I have to factor in travel time so I can tell my daughter how long we will be, roughly how long we will stay. I try to show a map of where we are going or my daughter will now google it so she can see how far she is going. Sometimes this helps and sometimes it doesn’t but at least I have tried to keep some sanity for my own peace of mind. 

It’s time consuming and some days it’s mentally exhausting and quite often I just can not face the questions, the tears, the anxiety and the stress of leaving the house. I would love to take my girls out everyday but it’s just not that simple. I can get them up, dressed and out the door that’s not the problem, it’s the endless questions, my daughter getting anxious and frustrated that makes me feel is it really worth it. 

Our daughter with ADD and anxiety just does not cope with leaving the house. Even to see friends or people she has known since being a baby or having planned to go somewhere she knows well, this I find hard as most people don’t understand how hard it is some days and how hard it is to relax once we have arrived at our destination when all I really want to do is go home and go to bed and start again. 

I find it frustrating and upsetting as I feel my children have had a rubbish holiday due to not being able to go out as much as I would wish. You see ADD is not just a diagnosis on a piece of paper. It’s not an excuse or just another name for a naughty child. It’s bloody hard work, consuming, irritating, stressful, upsetting. It makes you feel as a parent a complete failure. It undermines family life even when you don’t want it to and the worst thing is that even as a parent there are days that you will blame yourself, your partner/husband and even your child for the emotions that you feel due to ADD. Anxiety also affects the whole family as well as being dehabilitating and scary for the individual. Anxiety has started to impact my daughter more and more the older she is getting and the more she figures the work out and understands a little more. The anxiety is because she feels out of her comfort zone, she can not cope with a change of scenery or me planning anything. As a mum I try to help by

  • Staying calm……. this is very hard to do when you have other children around. The anxiety felt by one child seems to have a wave effect and everyone feels sensitive to what is going on around
  • Try to plan….. harder said than done as life is flexible and plans are not ridged. I have started to write everything down for my daughter in a pocket diary so she can keep track of where she will be and what she is doing. If plans change though and as a busy mum I forget to alter the information then this idea works against me and I often feel I am back at square one
  • Don’t plan something for everyday……having a very busy schedule can work and going out most days can also help with hyperactivity and attention but I now feel that my daughter sometimes just needs days at home in her pj’s to play with her dolls and relax. Again this can backfire with sibling fights, boredom resulting in screamaing and stress but slowing the pace some days also gives me a chance to wind down and not have to be getting the kids ready and rushing about.
  • Don’t ask my daughter what she wants to do…..this could be construed as controversial but unless you are willing to do exactly what she has suggested you are just setting yourself up for a fall and an awful lot of stress if the activity they wish to do is not feasible. 

Sitting here now watching my daughter react to us going to the park this morning. She has known we are going for two days and up to last night it was all she could excitedly talk about but this morning the realisation has kicked in and my daughter is worried and rocking and hurting her younger sister because she is worried about who is going to be there, what time we are going, if it’s going to be wet, how long we will be, what can she take with her, anyone else have this?
It’s at times like this my heart breaks. My other children accept where we are going and can’t wait to go and have fun while L feels scared. Is it the right thing to take her out, how would I feel if I was made to go somewhere I really didn’t want to go….in honesty there is such a place and if I am told I need to go there my heart races, butterflies start up in my tummy, my palms get sweaty and my mouth feels dry. To have to feel these symptoms everyday for what you or I would deem trivial everyday life I just can’t fathom. I think my daughter is amazing to do the things she does and to have me making her do things though am I making her worse or helping her to overcome?

Days like this make it all worthwhile

Life with kids is amazing, awe inspiring, full of love, happiness, tiring, hard work, frustrating, heartbreaking, but we do our best we find what works and we do the best we can. It’s all we can do and even on bad days I hope my children know just how much I love them and how I would move heaven and earth if I needed to for them.

Happy Easter, hope you all get some rest and precious time with your children.

Xx Leanne xx

Transitions, EHCP Ramblings…..Sloppy Life in Realtime

The last few days have been the hardest I think I have had for a long time. My brain feels like its on auto pilot, its on a non stop rollercoaster and I can’t see the end. I am screaming on the inside while trying to look normal for my children, family and friends. So sorry but here is as good as it gets my brain is fried, here are my ramblings…..

Why….

EHCP’s, Transition to high school, impending residential trip, family holiday’s, work, hospital appointment’s, general life……

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holidays planned

As a parent of children with disabilities life is never quiet or simple or normal…… there is no getting away from it watching my sister’s I envy them some days because everyday there is something else I need to remember, something else I need to do, to tell, write, ring, order, the list goes on and on. To have a bat shit crazy couple of days feeling like a legless jelly baby who hasn’t a clue what they are doing is normal right? Life gets to us all so if you see me in the street with a bright red face, unbrushed hair, no makeup and looking like I walked of the page of a 70’s catalogue its because I am trying to be a mum, carer, advocate, researcher plus everything else. I go to sleep dreaming of the printer and what its going to spew out next, I wake up to the face of my 10 year old daughter grinning at me before commencing with the first of many rude words, screams, shouts, tear’s or just plain crazy bouncing of the walls until the medication kicks in and she can calm down and concentrate on getting ready for school.

The life of any parent is filled with ups and downs….

Its no different for any parent, we all worry the same, we all do the best for our children the same way and we all have good and bad days thats what I keep telling myself.

So why do I feel like I am loosing the plot well the EHCP for example….theres so much conflicting information out there I feel inadequate in my role as a parent in best supporting my child. Anyone who knows what and EHCP I bet knows what I mean. For those of you unsure its the education, health and care plan which is for those aged 0-25 who have additional needs and is there to coordinate your child’s educational, health and social needs and it also sets out any additional support that they may need. To me its a mind field, another obstacle which I have to try and hurdle over but with amazing people behind me and with the right knowledge I will go blindly forth and try and get my daughter the support that she needs to keep progressing and being able to live as normally as she can and be able to access everything there is to offer in this world.

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Hanging around in her hammock

Then couple this with the impending transition to high school and I feel like a first timer when in fact this is my third child to go to high school. In reality I think I am unprepared mentally in the back of my mind we are not near that stage but in reality we are. This period in our lives has crept up on me so quickly that I haven’t had time to process it never mind my daughter although after a positive look around the school she hasn’t mentioned high school since. With my older two its all they talked about for months before starting year 7. Here in lies my biggest worry as I am unprepared and so is she and it also makes me realise that maybe some part of me has not fully been able to process that my daughter has special needs. Does that make me a bad parent, I don’t think so its just I have tried to stay strong and keep things together and try and make life as normal as I can for my family when in fact I am scared that if I drop a thread our whole family existence will start to unravel like it did 4 years ago.

Raising disabled children is a juggling act. There are so many balls that I am afraid to drop but I have managed to keep them all in the air so far but when there are balls added like high school, the EHCP, new appointments, referrals I am so worried that at some point I am going to drop something and as a parent thats what I have nightmares about.

So tip to myself…..look after myself, take a break, delegate, ask for help, have a massage

take care

x Leanne X