Meeeeeeeeeee's Blog

my boys

November 6, 2011
1 Comment

My boys are doing so amazingly well,Robin may be on Jeremy Kyle this month as an inspirational child and the microcephaly awareness day was amazing such support shown.

My youngest still has problems walking his boots from the orthopedic at the hospital help a little the nightly physio on his feet and ankles are keeping his tendons supple his latest seizure meds which have been upped a little are fingers crossed working a little better so less seizures.The autistiuc part of him is a work in progress he is so bright,his nickname is Sheldon aka shelly bean (if you have seem big bang theory Sheldon character is so like him) the only issue that really seems to concern him at the moment and as a child who keeps on asking as once its on his mind he wont stop asking until he gets a suitable answer,it  is at the moment grandad can I see him? my dad passed away after his battle with cancer and he comprehends in a childlike way he can’t see grandad as he is in heaven.He is aware he has a mom and a dad who both have parents so he has another grandad a paternal one.

conversation goes something like this…

I..Can I see grandad.

Myself..Grandad is in heaven you remember.

I..I know,I mean my dads one.

Myself..hmm I will have to talk to them or your dad about it.

I..ok phone them,they can come to my house.

Myself..ok son I will see what I can do.

This conversation then was continued and brought up regularly and small few day intervals.

I..send my picture to grandad

Myself..err which grandad?

I..the one who isnt dead,whats his name? does he look like daddy or me? does he have a moustache like your dad?

(after lots of questions about him I couldnt answer..)

Myself..ok I will write to daddy and ask him to answer your questions.

I..ok you can phone him at work.

myself..he might be busy.

I..he might not be.

After a couple of months of these questions and him getting frustrated by my lack of being able to answer his questions and his father ignoring his sons plea for his help filling in the gaps (via my phone call and letter explaining his son requires his help support or input on questions he asked) I decided to go to the organ grinder not the monkey.I wrote to the grandparents saying basically the questions their grandson is asking and if they would fill in the blanks and Offered if they wish to see him as never have or contacted to ask the offer still stands.

His dad was phoned by a Third party to say as he was not being a help towards his son I had gone via his parents and wrote to them,he was not happy.But desperate times call for desperate measures.I recieved a letter a few days later stating until the night before they didn’t know we existed as their son knowing the letter was coming dropped the bomb shell.Ugh I felt bad as 1: what if they are really old shock is no good. 2:why would a father be ashamed of a child not wanting to share him with family.

I am still non the wiser on any details for my sons questions as his grandmother said let the shock sink in and will decide what they want at not to build on expectations also had my motives for bringing this to their attention questioned?

ok yes shock I agree but four months on no decision! Yes decided what they want,but shouldn’t it be as a young child what the child needs not a whats going to effect them as what harm is sending a young boy a christmas card or a birthday card or a trip for an hours drive in a car to see sports day nativity play.

questioning my motives..Shouldn’t they question how come their son hid pregnancy and birth and childs life from them,how didn’t they notice any character mood swings I know if my children are lying upset worried etc Why their son felt scared guilty or ashamed to talk to them.yes maybe their christian attitude to having a child out of wedlock was a factor,but surely rejecting a child is a greater sin.

 

 

 

 

 

 

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microcephaly awareness day

August 21, 2009
8 Comments

Last year on the 30th of september the first national microcephaly awareness day was held and people were urged to wear red to show support and raise awareness.
I set this up via my son robins facebook group as microcephaly is a very rare disability and it was a sadly overlooked disability it went really well with people over the uk wearing red for the day a bus company in portsmouth wore red,various schools wore red and the money raised went to bibic a charity which helps children with various brain injuries and disabilities including microcephaly.
Last year I was busy emailing downing street,even our majesty the queen was asked if she would support us by wearing red and giving press interviews,I was quite surprised I have been asked by a charity in USA the children with microcephaly foundation if they can join us this year and make it global.
I obviously said yay as it is doing exactly what I aim to do and make this rare disability known,this year we are wearing yellow as it is the charities colour and as it is the only charity for microcephaly in the world I agreed to change the colour.
As robin started this campaign I was asked if his photo could be used on the press release and flyers again I have agreed Robin is saying wow I’m going to be famous in america not quite as famous as michael jackson.

The press release has been done today and flyers I have just emailed off a photo of young man so it can get into circulation,jenniffer the president of the charity is going to send copies of the press release and flyers.
It goes to show if you think you are too small to be effective you have obviously not been in the dark with a mosquito,from a small person like me wanting help my son lots of children and parents will be helped all because an eleven year old boy wanted people to be aware of his disability.
Robin had ideas and is being helped bring them to light by our american friends,I am so proud of my son he is an inspiration that even though he has learning disabilities and physical disabilities he wont give up.


wow finally get online

July 30, 2009
2 Comments

wonderland 059wonderland 053wonderland 051It has been an hectic few weeks,Isaac had mild swine flu then a chest infection which caused his temperature to go high causing seizures.
My father was at mine and had a small heart attack on my settee which scared me out of my wits so both Isaac and my dad were both in the hospital at the same time,my dad was admitted at four pm and I finally got home at two am the next morning and had a quick drink and very little sleep as usual and Isaac was taken by ambulance at nine am the same morning.

I have managed to get a few fun times in with the children a trip to wonderland before Isaac and robin had swine flu and last sunday a trip to bath so the boys could see their favourite rugby team ground,they loved it.
I now have a special needs buggy for Isaac as after seizures his side is weak causing mobility problems and after a seizure he is sleepy and he is getting quite heavy for me to carry and caused me to have a slipped disc and if they cant control seizures as gets older I really am going to struggle if i have to carry him.

a few pics of the kids at bath rugby club,robin got to kick a ball through the posts,it was really good to see as a couple of years ago he couldn’t even kick a ball.


The special mother

July 10, 2009
3 Comments

The Special Mother
by Erma Bombeck
Did you ever wonder how mothers of disabled children were chosen?
Somehow I visualize God hovering over the earth selecting his instruments of propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger.
“This one gets a daughter. The Patron saint will be Cecelia”
“This one gets twins. The Patron saint will be Matthew”
“This one gets a son. The Patron saint…..give her Gerard. He’s used to profanity”
Finally He passes a name to an angel and smiles. “Give her a disabled child”.
The angel is curious. “Why this one God? She’s so happy”
“Exactly,” smiles God. “Could I give a disabled child to a mother who does not know laughter? That would be cruel!”
“But has she patience?” asks the angel.
“I don’t want her to have too much patience or she will drown in a sea of sorrow and despair. Once the shock and resentment wears off, she’ll handle it. I watched her today, she has that feeling of self and independence that is so necessary in a mother. You see, the child I’m going to give her has his own world. She has to make him live in her world and that’s not going to be easy.”
“But Lord, I don’t think she even believes in you”
God smiles, “No matter, I can fix that. This one is perfect – she has just enough selfishness”
The angel gasps – “Selfishness? is that a virtue?”
God nods. “If she can’t separate herself from the child occasionally she won’t survive. Yes here is a woman whom I will bless with a child less than perfect. She doesn’t realize it yet, but she is to be envied. She will never take for granted a ‘spoken word’. She will never consider any ‘step’ ordinary. When her child says “Momma” for the first time she will be present at a miracle and will know it. I will permit her to see clearly the things I see…ignorance, cruelty and prejudice…and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as if she is here by my side”
“And what about her Patron saint?” asks the angel, his pen poised in mid air.
God smiles “A mirror will suffice”


The waiting is over.

April 8, 2009
10 Comments

I decided to ring the DWP today as it was eight weeks since I had filled in and sent off Isaacs forms for disability allowance and the letter stated if I hadn’t heard in eight weeks to ring them.
The lady on the phone was a delightful lady and asked the usual questions Isaacs application number and date of birth and she said ok do you want me to let you know desicion over the phone,to which I said go ahead expecting the worst,she said can I check the details of the bank account the money will go in to.At this point I was not sure wether that was a security question or a hint that Isaac was going to get the neccessary paperwork to take to the dss for the extra help he needs.
I frantically searched for my details and read them over the phone and she said ok,well your son has been awarded higher rate dla,in shock I said he has??? she said yes ( there are three rates according to severity of disability and care needed and obviously hospital reports state that he is in need of 24-7 care) whilst trying to get my head around the fact I was actually getting the paperwork I needed to help get free travel to and from hospital and to prove that I’m a full time carer so wouldn’t have to explain situation and private life continually to dss,which is a blessing,the lady on the phone said we have back dated your allowance from the fourth of february the day you rang for the claim forms and it has been put in your account yesterday and it usually takes a week to clear,at this point I could of hugged her I didn’t actually hear how much was put in as I was shocked that I didn’t have to appeal.
Once the easter holidays are over and I recieve confirmation of Isaacs dla award I will ring the dss and notify them of my circumstances changing and that I shall be a full time carer and they will be able to change my status on books and will swop over so I get carers money topped up with income support as being a single parent I cant keep carers allowance as well as income support its either or and I really needed
the disability award so I could get the carers component to get the extra help towards nursery places and to get him into the system ready for school and help with travel costs to therapy and hospitals.
That is a weight lifted.


my mind wonders and sometimes I loose it completely!

January 30, 2009
6 Comments

Today It has been all too much for me,the dr hadn’t sorted out the necessary paperwork properly or passed the information on to the health visitor,she thought oh a nice easy two year check up,she weighed him he has put his weight back on he had lost due to the medication a side effect is putting weight on,his height is average for a two year old.
She didn’t do any more tests as he has been refered to the child development centre as since he started having his seizures he has lost some previous skills that he had and is showing some autistic traits,which is all pointing towards lennox gastraux syndrome.The health visitor was oblivious to this as none of the drs in the surgery had informed her.various questions were asked does he sleep well,errm all depends if he has a seizure or two in the day then he sleeps nearly all day not so good at night if he has a night seizure or two then he has a broken nights sleep but has a lay in later.Oh I bet you don’t get much sleep *me* no as if he has a seizure I lay awake watching him and checking his breathing if he doesn’t have one I am listening out for him incase he does so don’t get a proper sleep,she said you need some support,so she has put him in a referal so he is in the system.Whilst this was being not sorted but I had to explain again medical history my phone went for the tenth time off Isaacs daddy as I’d not replied what was wrong and why I was upset via texts.I had told him I was too upset to talk to him at the moment which I think made him more determined to speak to me.
After a really horrible couple of days I really was emotional and trying my best to hold things together and thought talking to isaacs daddy wouldn’t do me any good as I’d take things the wrong way and he’d upset me.How wrong I was! he left me a voice mail after about the fifteenth time of phoning me and said I’ve tried contacting you all day as you know this will be my last today as can’t call again so I’ll phone tommorow.
I sat down with the children in the lounge and was chilling as best I could then my phone rang I didn’t recognise the number so I answered in case it was important,it was Isaacs daddy off his works mobile,he was quite frustrated as I’d not answered his phone calls and was worried about me and Isaac we had a chat about Isaacs medication and he agreed that if needed that the riskier option was what we should do for Isaac It was nice to get some input about isaac and a bit of support,he then asked me if I’d got Isaacs bed alarm I said no and he said he would buy one online and have it sent to my house so I could get a bit of sleep and I said because of his seizures in the supermarket and due to the fact that Isaac has lost a few skills since starting seizures He has a place once a week at pre school and his daddy said to help Isaac get his skills back he will pay for an extra session each week and he will try and phone me more to see how I am and how Isaac is doing.
I had a mild asthma attack today too much stress hopefuly things will get better.


support and solutions

January 27, 2009
6 Comments

I’ve sorted out the problem of Isaac having seizures in the supermarket,I’ve got him a place at little springs academy on a monday afternoon It is £7 for the two and half hour session.That will give me time to get to the supermarket do a quick shop and get home and put the shopping away and grab a quick drink before I pick him up.
I took him yesterday to try and get used to it,he had a peg with his name on his has a picture of a truck on for his coat and pumpbag or bag,the majority of the bags were the same thomas the tank engine or iggle piggle and plain red pump bags as that is the only colour the local uniform shop had.It was a mass of red pump bags and as it is confusing I have got him for next week a yellow pump bag with support our troops on,his favourite colour is yellow.
He went in and I sat nearby in the classroom the register was called and the children have a photo with their name on it and it is put on the wall,then they were asked what day it was and what was the weather like and the children put pictures of the sun and clouds on a wall chart,then they can choose what to play or what activity to do.
Isaac was asked by one of the children his name he said Johnny rugby.Bless him just before snack time he fell asleep on the teachers lap so a make shift bed was made out off large cushions and I then went and ran to the supermarket and got a few bits waiting for the phone to ring all the while I was there.
I rushed back and was waiting outside at five minutes past three,they finish at a quater past.He came out covered in red glitter and sand in his ears and I carried him home no soon as I went through the door he went towards the kitchen pointed to the fridge and he had a sandwich.

The doctor has rang me and he wants to discuss something with me regarding Isaac so I have to go on friday afternoon,I have an appointment with the health visitor on friday morning for his two year health check and I’m going to ask her to help me get the support Isaac needs,he is currently engrosed in watching Justin fletcher in something special I’m trying to get him tickets to see him live in the cee beebies show as he gets really excited when he is on tv he can also do the sign language *makaton* that justin does.

We have this Joke when robin is not doing as he is told carrie-ann says we will put him on ebay and he always replies to carrie-ann I’d get lots of bidders you’d make 99p if We put you on.Robin was not eating his tea last night and was playing with his food and I asked him to stop playing and eat it.Isaac turned round and pointed his little finger at him and said you beebay.He couldn’t eat his food for laughing.


The good the bad and the uncontrolable

January 20, 2009
8 Comments

I’m not going to say much about yesterday as it was as stressful as I’d imagined and I also now have to take the riskier option regarding Isaac..
The lovely Joanne sat with me as I clock watched having random conversations like I text you last week and asked you out and you never replied,to which I had text I couldn’t and ask paula,she was adamant i’d not replied and this conversation was yes I did no you didn’t for a few minutes.I think she was trying to take my mind off worrying about how Isaac was by having silly random conversations about anything that popped into her head.
Robin came home from school stressed as they had changed the timetables and classes and he was put in the special needs class as they had mixed abilities to start with.He was upset saying they think I’m stupid but I get all the answers right the teacher asks I just can’t read or write very well,so I had to console him that they probably moved him so it would be less stress for him,he said well their the stupid ones then I’m more stressed now.
Carrie-ann has exams today and has had a letter to go to bangor university for a residential she is doing babysitting to save towards university,she is a tag rugby coach for youngsters so that has given her more ucas points.

My phone is on silent as little man is asleep he had a small seizure in the supermarket,(I think its the lights in there) he is usually tired and achey after a seizure,and I’m having a drink and a gingernut biscuit then I’m going to reply to the texts I had asking how Isaac was yesterday.