Maddies Ramblings

happy birthday mr fabulous luca

2010-07-27T13:16:00.000-07:00

Tomorrow July 28th is a very special day in my life. Firstly because it’s my wonderful brother James’s birthday and he has been one of the most important people in my life, my whole life and he will always be one of the most important people in my life.

But most of all, The Fabulous Mr Luca was born.

When I fell pregnant on Luca James Mania I was delirious with excitement as he was a fertility treatment baby, I was overjoyed and just ecstatic. Life was just going so great and we where in such a happy and positive place in our lives.

Disaster struck when I was crippled with pain in my left hand side, at this time I was unaware the treatment had been successful but taught I had a kidney infection. When on fertility treatment you must always do a pregnancy test before you combine with an antibiotic, and there it was, I was PREGNANT, over joyed,

I went to the doctor for antibiotics but to my horror it was not an infection but a threatened miscarriage. I was sooo upset, it was the most earth shattering moment of my life, I rushed home to my bed, in agony for 8 weeks and in pain, every day thinking my beautiful baby would die and I could barely begin to imagine being without him.

I fought so hard to let myself prepare for the worst, I wanted to be strong and be brave but all along wishing and praying my baby would make it. On the 12th week the pain stopped, morning sickness started and tiredness crippled me, yes we made it, we fought and we made it. My baby boy was here to stay.

Luca every day since the day I conceived you I have been fighting for you, praying for you, carrying you through and I will never ever stop, you are my world and I love, adore and worship you. You amaze me every day with your courage, strength, love, affection, attention, everything. You light up mine and others live’s with those big twinkle eyes and heart melting smile; you stop people in their tracks with your beauty and personality. People fall deeply in love with you after just being in your company for 10 minutes. You are my angel from heaven and I will protect you and help this world see you and love you just as I do. Your innocence is your virtue and your world is your peace and harmony. I love walking with you on this wonderful journey your taking me on, visiting your world makes me know that you are happy, content, secure and confident.

Your world is a better place than mine, and I don’t blame you for wanting to stay in it, but I do hope you will come and visit my world more often and get more and more confident and secure so that you’ll want to maybe move here in the future, if not I’m perfectly happy visiting yours.

Your where born at 9.50am Friday July 28th 2006. You weighed 5lb 6oz and you where so dark in colour and very very tiny. You where so quiet and still that id panic and check that you were breathing. You startled at noises yet still never made a sound. You where then and still are now the most beautiful child I have ever seen. Your eyes are your soul, innocent and pure, your heart is like the sea, calm and peaceful, your beauty is like sunshine You are my everything.

I love you so much “the fabulous mr luca” happy 4th birthday xxxxxxxxxxx

thank you for being a friend

2010-05-06T15:38:00.000-07:00

Well hello there lol

So now, where does one start. It has been a rollercoaster of a journey lately; honestly I do not know one end from the other. The Creativity mill is open and doing really well, it’s been over whelming the support, custom and business that is coming through our doors and has knocked us for six. Most importantly I can proudly say that inclusion was our mission statement and include we did and are doing. People of all abilities are coming through our doors and were loving every minute of working with all types of abilities.

There is a lot of blog’s doing the rounds at the minute, gratitude awards, smile awards etc and I have been invited to take part in them all but have just not had the time to. So now I will take a chance to incorporate all the awards and invitations into one jolly blog.

A recent event left me really having to think about things. I consider myself to be a loyal, trustworthy, supportive, helpful and respectful friend, well I’m ashamed to say I lost track of this due to chronic tiredness due to the early onset of insomnia, physical exhaustion due to finishing the shop on time for opening day, my own personal stressful home life, stressful work load, living in 2 very dear friends pockets as we all work together every day round the clock well lots of reasons I could go on all day. I normally can look past so much, ignore annoyances and remember people for who they are not what they have said etc (family is different lol) I just take things with a pinch of salt and remember the friendship not the flippant comment etc, well I was so tired, stressed and just fed up and emotionally f****d up that I exploded. I said things to a friend who I love and respect so much that I just hurt her, I said things that were true to me at the time and I got annoyances off my chest but I was so tactless and angry and just lost all my sense of who the person I was saying it to was. I hurt her deeply and I really regret every minute of it. I wish I could erase the day, take a week off leading up to the day and just release it before I opened my big mouth. Thankfully we are getting on better as a team now than we ever did which is ironic considering but I just feel so sad in myself that I lost my self in anger and hurt someone’s feelings.

So on that note I am grateful for my friends, the smile they bring to my face, the laughter they share with me, the joy they bring to me and my family and so much more, I want to take this time to say thank you for being you xx

To all my face book friends especially my fellow auttie mums, you pick me up when I’m down, you laugh at my funnies, you sympathise with my worries, you send love and best wishes to my family when we are sick, you give me advice, share my concerns, comment on my ramblings and keep me out of the Looney bin. What more can I say, you are the best support network and bunch of friends a girl could wish for; I will be forever grateful xx

I would like to say to my dear friend Rachel, I am so sorry that I hurt you and upset you the way I did, I love you dearly and your friendship is more important than any of that other stuff xxx

Aine: what can I say, were to mental lunatics who have way too much in common, who’d have taught wed be doing this and surviving it lol. I love you dearly and your friendship means the world to me xx

Siobhan: you more than know you mean the world to me and my family and I can never thank you enough for all you do for us. There are not enough words to describe you but angel is definitely one. Your kindness knows no boundaries.

Vilma: what can I say, you are the glue that is holding my family together, I am eternally grateful for all you do for us and your friendship is something I will treasure forever, you are the most amazing woman I have and will ever meet, you are not only beautiful on the outside but even more so on the inside, I LOVE YOU xx

Beatrice, always there and always care, you really are a true friend xx

Tara and Arno: you guys have been so helpful and so supportive over the last few years, Ryli is very lucky to have you both as god parents.

Lily Mitry: what can I say, you helped bring my children into this world, and you have gone above and beyond for my family, no words could express how grateful we are to you and Amone x

Sam: we only know each other a short while but something tells me we’ll be oul ones exchanging kid raring stories while out on a hack and slagging each other about pains in our crack the next day hehe oh and getting barred from places for being too noisy lol

Caroline: Jesus girl, we’ll be still going to concerts in our 70’s; p it will be the girls bringing us to the old age pensioner section hehe

To all my friends in Castlerea, you never pass me by without a hello and always ask me how my kids are and praise me for the work I do with them, I know I’m useless at taking a compliment but I really do appreciate your kind words xx

To all my friends in Dublin, old neighbours, school friends, childhood friends, work friends, miss you all and love when we actually do get to meet up, sometimes it’s so hard to be so far away especially when you’re down and in need of a shoulder, drinking buddy and bitching about life buddy. We need to meet up more often, Dublin I’m a coming 

Fidelma: You are so understanding, patient and just flexible, the work you do with luca is unbelievable, he is so happy and coming on in leaps and bounds every day, I cannot thank you enough 

I know I have left so many people out and I no more meant to but its so hard to think straight these days, so to anyone I left out, thank you xxxxxx

SUNSHINE AWARD

2010-03-11T14:58:00.000-08:00

Ok so I received this award from Jazzy girl weeks ago, so now my acceptance speech

First of all, Jazzy thank you so much for this award, am really touched, apologies its taken weeks to collect it. Why, I didn’t know how, still don’t so I got to just do it this way lol

Well I never intended to be a blogger, in fact I was just writing and sharing my journey through the madness of Autism and Aspergers for my 2 affected children and sharing on face book to all my friends who know them.

The lovely tazzy started me blogging and I have been on an annoying roll ever since. Thanks Tazzy xx

I’m touched that you all take the time to read my blog and when you leave comments it just makes blogging even more worthwhile. I love the comments and it gives you that lift and good feeling especially when you have shared something so personal and close to your heart, it makes you so appreciative that there are people supporting you and spurring you on to keep going in life.

So thank you all so much for that. I also want to take this cheeky opportunity to thank you all for nominating me for The Irish Blog Awards, I have now made it to the short list which I am blown away by, I’m still in shock that I was even nominated let alone this far on with it.

My kids are my life and I owe my life to them, they are truly amazing and an inspiration to me, what they go through and how they get through it is a credit to them and they are really and truly wonderful kids, so this award if for them, as at the end of the day, they are my RAY OF SUNSHINE xx

LIFES A BITCH and then you die

2010-02-28T03:16:00.000-08:00

so fight the bitch back!!

Did you ever just want to wake up 20 years later than now and take a sigh of relief that you were asleep for it all? Im short of ordering Prozac online and seeking foster care for my 13 month old son, well im not really but id be lying if I said I didn’t think about it for a split second LOL

I cope extremely well with Lucas autism and KY’s Asperger’s in general and im not a sympathy seeker, moan and whiner, I generally take everything on board, try all I can and go with it and move on with it. Im good at that, im built that way. I don’t dwell, cry and think poor me, I just say right so I need to do this that and the other and do it.

Well im going to take a poor me moment for once cause I think im entitled right now.

I’ve had enough, I NEED SLEEP, I NEED MY BABY TO STOP SCREACHING.
It’s so hard right now, im lost and confused and struggling. I’ve got all these crazy taughts going through my head, WHAT AM I DOING WRONG, WHY ME, GIVE ME A BREAK. It’s all there, its all deep and worrying me.

Autism slapped me in the face the last two weeks and it’s left a nasty mark. I recently started Luca in a play school for 2 days a week on top of his special needs play school; it appeared to be going well. But a new behaviour kicked off, biting and pinching. Luca is never aggressive, he has not suffered from frustration is such a long time, in fact a year to be exact. But he cries all day in school now and refuses to interact and join in a group. He had been doing so well before Xmas and all couldn’t have been better. Just lately he is so upset and frustrated that he has taken to biting and pinching real aggressively. He took a chunk out of his tutors shoulder, she’s been the best in the world about it but I feel dreadful, he also bit a child in school but thankfully did not hurt him but only because the cuff of his jumper was very thick. I don’t get it, of all the extra therapy Luca gets it is deep pressure, we can’t not give it to him, it’s all he seeks and wants so he gets it non stop.

It really is upsetting me as he hurt Ky also quite badly by pinching her, he left a bad mark on her skin too, she was grazed. He has hurt me also but im his mum so that’s ok, but if he gets a hold of Ryli, oh god I dread to think what will happen, or one of my friends kids, now that would really kill me all together. Ky is so forgiving, she never holds a grudge, Luca is so special to her that’s it’s a wonderful relationship they have. Ky understands all about Luca, her aim in life is to help him and protect him. She is now expressing interest in becoming a resource teacher or a special needs horse riding instructor. She knows for certain that she wants to teach and be involved in special needs, im blown away by that, she is 9 years old and she is adamant that’s what she wants. She hates Irish with a passion and can be exempt from it if she wanted to, but she knows it will ruin her chances of primary school teaching so she’s going to stay at it even thoe she despises it, now that’s dedication lol. I love that child so much; she really is a special little girl, with the biggest heart you could imagine.

I realised that autism is a slap in the face, you plod along with it for so long and it goes really well then WHACK a new element kicks in and knocks you for six, Biting and pinching is not such a big deal, its behavioural and you follow a programme and therapy and go with it, that’s the norm. But the fact that it comes out of no where and lands with a bang, that’s hard to take in. Ryli is really a key factor also in Lucas behaviour. Luca and Ryli’s relationship aint great, in fact its non existent. I think realising this in the last 2 weeks has really been a reality kick. This is Lucas choice and he chooses not to like or accept his brother, even after 13 long patient months. He made it clear from the start that Ryli was not welcome in his home; we really did think that Luca would adjust and accept, nope. This is the painted picture for you. Ryli crawls into sitting room, Luca leaves sitting room, Ryli follows Luca to kitchen, Luca cries and leaves kitchen, Ryli cries and follows Luca, Luca has near heart attack and wants to go to bed. ALL DAY PEOPLE all day. Even the cat sees Ryli and runs but will cuddle and sleep next to Luca, Mr. jumping jelly bean himself, but Ryli, the cat does the road runner and is out of there, mi mi

I was recently asked a question by a girl doing a special needs course, she chose my son to do a parent interview on. The question, how has autism impacted on your life. I genuinely couldn’t answer, the fact is it hadn’t, at least I never taught it did. I knew through pregnancy Luca was going to have some sort of special needs, I always knew so was always prepared. Now my answer, autism had very little impact but a new baby in the mix, wow, now that was an impact. This wonderful, beautiful, happy baby boy whom I love and adore, but to be honest could cheerfully strangle some of the time, now he was an IMPACT.

I have not slept since the day he was born bar a scattered night when he stays in my mothers or friends house. Not only was he a restless baby but he was also sick nearly every month since the day he was born, now Ky was like that but this is so much different. Ear, throat and chest infection, antibiotics, he had every penicillin you can name that’s baby safe. And as for the squeal, its KILLING me, well all of us to be honest. It’s horrendous, it’s high pitched and it’s continuous. No one has an answer for it, no one can offer and help or suggestions for it, in fact there is no nothing for it, just the answer of, awww that must be so exhausting and hard to listen too. Well emmmm YES, what the f**k do you think, if your cat was meowing that much in the house, you would throw it out the door for peace, if your dog was barking non stop you’d slap it on the nose and kick it out the door, I cant do that with a baby but at this stage of the game im not short of trying.

If I move from his line of vision he squeals crying. Im only in the next room, he can crawl to me, but no it’s better to squeal after me. His temper is dire and his tantrums are worse, he’s 13 months and he has tantrums like a 2 year old. Anyway he’s the main battle but if it was just that id cope, id say ok I’ll wing it and try a few things.

So what else is adding to it all? Well he is undergoing tests in hospital under a paediatric team for all sorts, thyroid dysfunction, liver, kidney, blood function, haemoglobin count, cystic fibrosis’ testing, celiac disease testing, ah like that’s all I need. I have one child with Autism, sensory processing disorder and ADHD, another child with Asperger’s and ADHD with sensory processing issues, so of Corse why not give me a child with something else, and something completely different to the other two just to keep me on my toes. I really think if I had 3 kids with same problem it would be so much easier to cope with, but Asperger’s and autism, im sorry their completely different syndromes and if im honest Asperger’s is so complicated and quirky that I find it harder to manage than autism.

As if life was not hard enough, here you go Maddie, you seem to manage the other 2 kids really well, now lets challenge you further and give you a child like THIS, so here you go, here’s RYLI, lets see how you fair with this one. Oh god, for real like, did I not mention that im actually NOT super woman, im just plain old mum of 3 who yes has patience, yes has determination and yes is strong willed, but im also breakable, fragile and plain oul human. I have feelings, emotions and energy levels that run down.

I did a brave thing the last few weeks. I stepped outside my autism bubble and done something for me. It’s a very scary venture im embarking on, especially in this economic climate at present but I so need this. Im 33 and if I don’t do this now and take all the risks and run with it, I never will. I have a very good head on my shoulders, im creative, im driven and I appreciate hard work, and by god im going to be working my ass off. If I don’t do this now, I never will, and the girls im doing this with feel the very same, they need this too. We have great qualifications all 3 of us and there wasting away. We are stay at home mums and carers due to our circumstances. Were bored and fed up, were starting a business and were going to make it work.

Im very excited, im nervous and worried also but excitement and determination are winning me over. I must be mad as I could loose so much, but do you know what, with all I have endured and succeeded at over the last 9 years and lets not forget before I even had kids and was a little kid with a lot of personal hard circumstances (I really want to write about this but im afraid too many people will get hurt) , I managed, I struggled but god did I manage, and look, did it do that much harm to me, no it didn’t, it made me stronger, determined, hard working and accepting of all things hard in life and accepting of all people who have hardships. Im a good person and a great friend, im dedicated and 100 percent got your back. If I can’t make this work than I don’t know who can. Fuck it, if you don’t try it you will never know will ya.

So that was my poor me moment, my “to hell with it” moment and my little whinge for 2010, I so hope there are no more going to come outta me. Il continue to rant and vent, ill continue to muddle along and take it on the chin, and ill continue to battle my many demons but ill do it the best way I know how, with a kind heart, a wilful and determined personality and my head strong and stubborn streak, it served me well all these years and im grateful for my flaws. I got a 9 year old daughter exactly like me and yes she drives me nuts but I don’t want to change her one bit as she too will need these flaws to get somewhere in her life, and I will be proud of her the way I know my mum is proud of me x

I went on a tangent near the end of this post but ive been writing it for last 2 weeks with very little time to give to it, but i dont really care LOL hope you enjoy regardless

my 99 answered

2010-02-15T14:01:00.000-08:00

Started your own blog I started the blog the fabulous mr luca and maddies ramblings

Slept under the stars Yes when i went camping in Kent with the scouts

Given more than you can afford to charity Yes when i was 23 i gave 2 weeks wages to charity called red nose day but i was living with my now hubby at the time so i could borrow off him instead hehe

Been to Disneyland We went to diney land last year with Kyra and her friend Liam

Climbed a mountain Yes with the scouts, forget name of it now, something like k9 or k12 or something

Sang a solo I sang in a school play once, it was madonnas song cant remember it the name thoe lol

Visited Paris Yes when i went to disney land paris, but diddnt do eifel tower

Watched a lightening storm when i was on holiday with the scouts in luxemburg we watched the most amazing lightning storm, was an experience you could not forget ever

Taught yourself an art from scratch: i taught my self to do enboydery and claigraphy, i was a bit nerdy sometimes

Had food poisoning: yes while on holiday in germany, oh god il never forget it,i ended up in hospital and they wanted to give supositries big enough to shove up a bulls hole, fuck no, i got injections instead, nurse taught i was off my nut, seriously, if you had of seen the size of thoe things youd have done the same, i think they are fans of anal medication LOL

Grown your own vegetables: yes my beloved daughter is very creative and agricultural like. She loves to grow plants, flowers, shrubs and she successfully grew broad beans and potatoes etc with my help hehe so i can take some credit

Had a pillow fight who has’nt

Taken a sick day when you’re not ill again, who has’nt hehe

Held a lamb yes at a place called glendeer farm, was the cutest thing but their wirey and their coat is like rough and hard, weird as i taught it would be all fluffy and soft

Seen a total eclipse think we all have seen one of them in our hay day, remember looking through the tape deck case, how sad were we

Watched a sunrise or sunset yes both with my hubby on our honeymoon in lanzarote

Had enough money to be truly satisfied before i had Kyra both me and my hubby worked for computer companies, we earned incredible wages and had no mortgage etc, we lived it up nice, but money aint everything and you learn that quick enough in life

Gone rock climbing again with the scouts, can i just say the coolock scouts of my year done a lot and a european trip at the age of 12 was just amazing

Sung karaoke im a really good singer but give me 2 drinks first, give me the mike and im there singing for the night, best buzz in the world

Walked on a beach by moonlight yes again on my honeymoon ahhhhh how rosemantic pluh cough, spluter lol

Been transported in an ambulance when i was 4 months (horrendous pregnanycy, hated every day of the nine long months) pregnant on Kyra i suffered the worst head ache of my life, i went paralized down the left hand side of my body and i truely taught i was dieng. I could not blink, move the left part of my mouth, i had no feeling on the left. They taught i had melinjitis and i was rushed to hospital xmas day 1999 when i was kept in over night. It was a migraine and mini stroke , apparantly a migraine can bring on a mini stroke. An experience I WILL NEVER FORGET

Gone scuba diving or snorkeling yes i did this both in cyprus and in lanzarote, snorkling not scub diving, id love to do that

Kissed in the rain ahh who has’nt

Played in the mud i used to be a muck magnet when younger. I loved making mud potions and mud pies, my mother was driven demented by me. I also used to go motorbike scrambling with my brother over self made mud hills (really not good for your health lol) and i alse played camogie

Started a business When Kyra was 4 i opened my own play school and after school, i also had my own creche but was all run from my house as i never got round to my out door building conversion, its really annoying all round having your house so invaded so i gave it up and went to work in an aba school instead. It was very successful and i kept a baby and an afterschooler on (brothers) and i still see them to this day, they became like my nephiews and my self and the mother are great friends still. I still have my own business plans buzzing in my head and am hoping to have a plan of action for a big venture coming up soon.

Taken a martial arts class I have taken that many i couldnt count. I used to do karate when i was very young and i then moved on to a martial art called NINJUTSU, i loved this as i suffered childhood depression and this was a way to release stress, anger, and just feel involved, i have trained for years and have done very well in it

Got flowers for no reason yes but again who has’nt

Visited a Nazi Concentration Camp yes when on a european tour with the scouts, was a really horrible place, cant remember name, was in belgiam i think

Flown in a helicopter ahhh this was so cool, we where on honeymoon in Lanzarote when we took a helicopter tour of the island. It was lovely but taking off in a helicopter isnt, you think your going to nose dive into the ground when it lifts off and then you get really horrid motion sickness, there were 4 of us on the tour and for the first 20 mins we were all green but then when your up and going its fantastic

Saved a favorite childhood toy Yes my teddy Paddy that now proudly sits on Kyras bedroom shelf, i love Paddy, coud never part with him

Been a passenger on a motorcycle so many times as my brother owned a scrambler motorbike and my other brother owned a sports motorbike

Had your picture in the newspaper yes for some choir competition in arklow

Had chickenpox think most of us had these

Saved someone’s life when on holiday in cyprus with a friend for another friends wedding, my friend decided that even thoe she could not really swim and against my advice wanted to go down a water slide at a water park. I went down first and she followed, you fell into a rapid whirlpool, she got trapped in the whirlpool and all i could see was her arms flapping then getting weak. I was struggling to get to her through the whirlpool and after finally getting the attention of the lifegaurd who was too busy watching a very pritty girl in a bikini, he saw me struggling and i had her half out (her head above the water) and he helped pull her out with me the rest of the way. She had to get medication and rest and she suffered so bad for ages after, but all was ok, frightening thoe.

Then again i was in a car park, a toddler had broke free from his mother and was standing crying looking for her when a delivery truck started to reverse but did not see the child, i had to leave kyra in her buggy at my car and run and grab the toddler as truck almost ran him over, mother was that panicked and stressed that she was too busy screaming at the truck driver to even say thank you, but all that mattered to me was that baby was safe

Met someone famous all im going to say is that i grew up on the north side of coolock and partied and went to the same nightclubs as a few familiar boyband members and worked with the siblings etc etc, i think anyone who lived in coolock then can answer yes to that question with 2 very famous boy bands
Got a tattoo i have a chinese symbol on my right shoulder

Had a baby i had 3

Owned a cell phone who does’nt

99 things

2010-02-10T16:03:00.000-08:00

I have seen this post at foodies blog so i decided to give it a go as foodies where so cool.

This is just for fun. Here's a list of 99 things. Bold the ones you have done and post on your blog! =)

Started your own blog

Slept under the stars

Played in a band

Visited Hawaii

Watched a meteor shower

Given more than you can afford to charity

Been to Disneyland

Climbed a mountain

Held a praying mantis

Sang a solo

Bungee jumped

Visited Paris

Watched a lightening storm

Taught yourself an art from scratch

Adopted a child

Had food poisoning

Walked to the top of the Statue of Liberty

Grown your own vegetables

Seen the Mona Lisa in France

Slept on an overnight train

Had a pillow fight

Hitch hiked

Taken a sick day when you’re not ill

Built a snow fort

Held a lamb

Gone skinny dipping

Run a Marathon

Ridden in a gondola in Venice

Seen a total eclipse

Watched a sunrise or sunset

Hit a home run

Been on a cruise

Seen Niagara Falls in person

Visited the birthplace of your ancestors

Seen an Amish community

Taught yourself a new language

Had enough money to be truly satisfied

Seen the Leaning Tower of Pisa in person

Gone rock climbing

Seen Michelangelo’s David

Sung karaoke

Seen Old Faithful geyser erupt

Bought a stranger a meal at a restaurant

Visited Africa

Walked on a beach by moonlight

Been transported in an ambulance

Had your portrait painted

Gone deep sea fishing

Seen the Sistine Chapel in person

Been to the top of the Eiffel Tower in Paris

Gone scuba diving or snorkeling

Kissed in the rain

Played in the mud

Gone to a drive-in theater

Been in a movie

Visited the Great Wall of China

Started a business

Taken a martial arts class

Visited Russia

Served at a soup kitchen

Sold Girl Scout Cookies

Gone whale watching

Got flowers for no reason

Donated blood, platelets or plasma

Gone sky diving

Visited a Nazi Concentration Camp

Bounced a check

Flown in a helicopter

Saved a favorite childhood toy

Visited the Lincoln Memorial

Eaten Caviar

Pieced a quilt

Stood in Times Square

Toured the Everglades

Been fired from a job

Seen the Changing of the Guards in London

Broken a bone

Been a passenger on a motorcycle

Seen the Grand Canyon in person

Published a book

Visited the Vatican

Bought a brand new car

Walked in Jerusalem

Had your picture in the newspaper

Kissed a stranger at midnight on New Year’s Eve

Visited the White House

Killed and prepared an animal for eating

Had chickenpox

Saved someone’s life

Sat on a jury

Met someone famous

Joined a book club

Got a tattoo

Had a baby

Seen the Alamo in person

Swam in the Great Salt Lake

Been involved in a law suit

Owned a cell phone

Been stung by a bee

38 Not bad. See how you fare and post it! Enjoy!

ADHD / ASPERGERS /BIPOLAR Is there a link to alcahol / drug abuse

2010-02-08T11:41:00.000-08:00

A recent question i asked to Professor Cinda Johnson and her amazing daughter Linea:

Hi Linea and Cinda

I have a lot of theories into the whole mental health / Aspergers / Bipolar issues

One I have which im hoping you can clarify for me is as follows

Is it so that a childhood illness like ADHDA / Asperser’s / Giftedness / ADD / Depression etc is left undiagnosed and un treated that your body is so chemically imbalanced that it is a high risk of forming Bipolar disorder.

I will explain

I know of a girl (several to be honest) who had ADHD type hyper behaviour as a child, it was extreme when she was younger. She was very intelligent and yet refused to co operate in class. Her teachers always suspected something more serious than just being difficult as an issue but the mother could never get any help for the child.

Later in her teens, the child started to experiment with alcohol; this seemed to be a quick fix until her body got fed up and craved more intense chemicals. She then went onto light weight drugs before finally turning to heroin. She spiralled so out of control and had many suicide attempts and over doses

The girl then became manic and could take on the world and succeed before she became so down that she would quit before she finished her projects

Now my theory, she had undiagnosed ADHD or/and Aspergers syndrome. Her body was starved of intervention and medication of any kind so it went onto the next best chemical, alcohol; again not good enough so craved light drugs, and then the final blow out heavy duty chemical drugs.

She is now diagnosed with Bipolar 2 and had an underlying intellectual disability which can no longer be recognised in her and there for diagnosed. She is on a serious amount of medication for the rest of her life. When she dips after being manic, she is so violent and could kill all in her way and has almost done so to her mother,

She is still dipping with drugs constant and has taken to being involved with a heroin supplier and thinks she is ready for the next big adventure, A BABY. She is also paranoid beyond belief that her mother is talking about her and her boyfriend one minute and then the mother’s best friend again 2 months later. Mother gives in as too worn out not to.

My big question, Is it possible that if you have an undiagnosed and untreated illness in childhood that you are high risk of Bipolar disorder and that it can be prevented with early diagnosis for original problem and treatment

I will post with her permission the answer she gives to me, if and when she can

balls !!!!!!!!!!!!!!!!!

2010-02-08T06:10:00.000-08:00

Ok I’ve been thinking about this for such a long time

Why do men scratch their balls??????

What is it; you don’t see women scratch their left tit first thing in the morning, so why do men have a scratch first thing; not all and not every morning but they do it, their famous for it.

Now this is an odd blog I will admit but it’s a topic I’ve wondered about for a very long long time.

Ok I’ll explain

I had a 3D scan done on Luca when I was 20 months pregnant. I was told on the way to hospital to drink a cold fizzy drink. This was to make sure baby was awake and moving for the scan. As I was addicted to Lucozade orange at the time, this was not a problem for me at all.

When I got on the bed and the cold yucky gel was put on my tummy I saw my baby (Luca) but he was fast asleep (nothing new there so). The nurse laughed and said, we’ll have to wake the baby up, now I had no idea what sex he was but I had suspicions he was a boy.

She wiggled my tummy, (so cute as you can see him wiggling inside on the huge plasma screen in front of me) Ok eeeeerie I must admit but one eye opened, and this arm like figure went down to his balls and he scratched. I swear to god, this happened, (I have the evidence somewhere in my attic, I will try find it and find a way to put on web) and all I could do was say IT’S A BOY. And sure enough she said, yep, it’s a boy. The room was in hysterics of laughter, god love the people outside, they must have taught we where all mad. The sonographer asked if she could make her own copy of our DVD and keep a picture of Luca’s eye open for her records. We said yes of Corse and she gave us extra pictures and extra footage of the DVD as a thank you.

So my question, why do they do it? It is obviously a trait way before birth. I would never in my life have imagined a baby would do such a thing from the womb.

This also explains the child who tugs lol.

You know the child who likes to pull down his nappy and have a good tug, or the child in the bath who tugs away to his hearts content, much to the horrified onlooker (or trying not to look), yuck.

Luca is a tugger. From the time he was conceived and developed enough, he tugged. When he was born, nappy off, tug tug. I was quite disturbed by this as my newborn was tugging on his willy every time I changed his nappy, (lets just say he may have had hand eye co ordination difficulties, but he sure didn’t have hand – ball co ordination difficulties) and to this day he tugs away, stretches, pulls, ooooh seriously yuck, so yes he will obviously be one of those nut scratching men

Now I’m also one of those mothers that respect’s the fact that as I don’t have one to scratch, (well not on my body anyway: P) I then have no business telling my son that he can’t play and scratch with his. But I do have to teach him that there is a time and a place.

He is at present starting potty training, and I will have this issue pop up (pardon the pun) every day until I can try find a solution to it. The problem, he is classic autistic with no speech and major communication difficulties.

Anyone any suggestions, answers on a post card please LOL

LITTLE WONDERS (LUCAS SONG)

2010-01-30T07:16:00.000-08:00

I was really brain storming a blog today; it was about the nature/nurture debate of the BOLD child. (hate that word and don't believe in it) my mind was racing with what I wanted to type, but then my hubby started talking to me and I completely lost focus and my taught disappeared, just like that “ poof “ gone. I tried to get my train of taught back, but gone, vanished, lost. I know I will write it again as its a topic I strongly have an opinion on but for now, its gone to bed and will set its alarm when its time to get up lol.

My motivation is so lacking today, to the point where it’s 2pm and I’m still not dressed or washed, yuck. I’m munching on Aldi’s big bite tea cakes (seriously yummy comfort food) I’m shattered and a bit down, I have no idea why, I’ve been really struggling the last few months and I think it’s just caught up on me. While with my new fabulous doctor yesterday I was explaining all about Dr George and old doctor and I just burst into tears. It was so hard to stop crying.

I finally admitted out loud that I can't cope anymore, that I’m struggling more and more every day. When Ryli cries, he screeches, it’s so painful to listen to as it’s very high pitched. He is so good yet so much harder than the other 2. He cannot cope for one minute to be on his own. If I go to the utility room from the kitchen, he cries, if I go to the loo, he cries, if I move from his sight at all, he cries. I try and ignore it but it’s just impossible. I also have his medical investigation coming up and to be honest I’m not sure how much more issues I can cope with.

What really got to me was the Area Medical Officer yesterday. Well dear if he is waking for a bottle at 3am, why don’t you try giving him his dinner then? I have to admit my face must have said more than a thousand words. I just stared for a while and said NO, no I won’t as I’m awake again at 6 with Luca. She gave me the kind of irresponsible mum look, if it wasn’t for the health nurse rolling her eyes in my favour I think I would have taught I was a bad mum for not doing it. Then I remembered that the AMO is not the enemy, she a lovely lady and believe me, if your child needs something, there is no better woman to have on your side. I took a deep breath and let it roll right off me. Ok a close one, but I’m OK.

I then went to visit my mum and ended up loosing my head with her. (she's not normally like this at all, think she's having her own bad week) She said the most stupid thing after lunch the other day. Luca’s Special Needs Playschool want to bring the kids horse riding. Instead of being delighted at the kids being brought to something that wonderful, she mocked it. She said well how can Luca sit on a horse, he’ll need a special seat with support, and how will they get him onto the horse in first place and then keep him on it, he wont get up on a horse, cant imagine him doing that, Oh My God, how negative can a mother be, how un supportive where her comments. It was also the same crap when I told her about Ky and the CTYI coarse, ah sure its just a bunch of little kids getting together to colour houses and so on. So yesterday I let her have it as she was pissing me off again moaning about nothing. I completely throttled her and told her exactly how she made me feel the last few days. That’s when I said oh oh to my self. I knew I was hitting a dark place again.

You see I can ignore a lot, over look things and just simply let comments that are irritating roll right off me, but that’s because I’m functioning perfectly, but when I start snapping and loosing it, that’s when I know I have to go into hiding, avoid all potential dangers and hibernate until I’m feeling fine and dandy again. I hate when I feel this way but it really is the safest option. I know I have to keep filling my head with happy taught’s. Take deep breaths and count to 10 before I answer people. I have to avoid all annoying people, stay clear of people with negative vibes and just surround my self with positive happy vibes.

I enrolled Luca into a local play school every Thursday and Friday. His wonderful tutor will also attend with him those days (seriously, this girl is just an angel). I also have Ryli’s name down for a couple of mornings a week in their baby room, It is full but something told me the manager could see I really needed to get Ryli in there for even a few hours a week. I so hope that when she rings me Monday she has a place for Ryli.

I also have been focusing on the little things in life, and remembering what they really mean and what their all about. I’ve been in touch with a fair few people who I was very close to from years ago, and I have to admit, talking to them about good times has been great and up lifting. Exchanging stories back and forth, having a giggle about the crazy stuff we did, remembering how crazy we were and full of life we where.

I also got thinking to songs that remind me of good times, brought back memories and just mean something. I was buzzing through you tube the other night and a song came to me, I was hoping id find it and I will copy and paste the lyrics. This song reminds me to Luca, his struggles and how they don’t matter; it really reminded me that the little things are the important things in life.

So here’s to you Luca, you truly are one of life’s little wonders, you are amazing and your smile is like the sun, your eyes are like diamonds and you your logic is your talent. When you smile you light up the room, your eyes twinkle and smile with you, they tell me how you feel and let me know when your happy, they fill my heart with joy when they look back at me, when you share a kiss or cuddle with me I remember to embrace every minute and not be too busy for your attention and affection. I cherish your way of thinking as it is innocent and adventurous. I am your guide in life and I always will be, but you are my guide to happiness and I hope you will always guide me on this path with you and remind me to stop and think of the little things as they are all that matter. That life is as simple as you want it to be and that stress is the enemy that takes those feeling away. You are my everything xx

LUCAS SONG

http://www.youtube.com/watch?v=jsT2URr1Igc&feature=player_embedded#

Rob Thomas - Little Wonders Lyrics

let it go,

let it roll right off your shoulder

don't you know

the hardest part is over

let it in,

let your clarity define you

in the end

we will only just remember how it feels

our lives are made

in these small hours

these little wonders,

these twists & turns of fate

time falls away,

but these small hours,

these small hours still remain

let it slide,

let your troubles fall behind you

let it shine

until you feel it all around you

and i don't mind

if it's me you need to turn to

we?ll get by,

it's the heart that really matters in the end

our lives are made

in these small hours

these little wonders,

these twists & turns of fate

time falls away,

but these small hours,

these small hours still remain

all of my regret

will wash away some how

but i can not forget

the way i feel right now

in these small hours

these little wonders

these twists & turns of fate

these twists & turns of fate

time falls away but these small hours

these small hours, still remain,

still remain

these little wonders

these twists & turns of fate

time falls away

but these small hours

these little wonders still remain

Ridiculously Proud Mummy

2010-01-20T08:52:00.000-08:00

Today started off as one of those days you just wish you could go back to bed.
I had Dept of Ed stuff to do, I was shattered from sick kids puking in the middle of the night, changing them and bed clothes, showering them, and I was just so so tired. I had shopping to do b4 the kids called social services as no food in the fridge, a full freezer mind you but the essentials needed topping up.

Ok so it starts. Dozy KY was just that, dozy. She is not a morning person and neither am I so clash city is a good description. Luca was himself, ignorant and oblivious to anyone or anything, causing a mess, eeeeing and ahhing and just being Luca. Ryli ahhhh Ryli, may the Lord just strike me, this child is a walking, demanding, head melting demon (but a very cute and lovable one)

Scream, ok Ryli hold on, scream scream, yes Ryli, I’m coming hold on, SCREAM SCREAM SCREAM grrrrrrrrr WHAT and of coarse there is nothing, nothing is wrong, he needs nothing, he wants nothing but my complete and undivided attention. SMILES all round. Ok, right son, I really have to get dressed now, I need to get to the post office and shop. SCREAM SCREAM SCREAM as I head up the stairs.

I manage to get a pair of jeans on and I’m actually really happy as I lost a fair few pound by the feel of it, yippee. SCREAM, ignore him Mandie, you will be down in a minute. No full out and out tantrum, wow that boy of mine has a wicked temper, poor Luca going insane with the noise of him, right, I go down the stairs, pick up the child and bring him upstairs with me, this is met with smiles and laughter (not mine, his)

Right I now try and get my top on, watch the baby and take a few things off him that he has found in my room. He picks up the remote control, grand play with that, fine. I’m brushing my teeth over the sink, PLOP, WTF has he just threw into the loo, my remote control. GRRRRRRRRR oh I want to kill him, oh this child is impossible, I cannot move without him forming an extension onto my hip. God damn Ryli,

FF sake. Right top on, remote fished out, down the stairs, and what awaits me, the Dept of Ed form for payment. Right in-between the screams of me putting Ryli into his high chair so I can fill them out, and shoving a banana at him to keep him quiet I fill in my form. Ah I’m going to photocopy it in case they AHEM loose it AGAIN

I’m upstairs photocopying, he’s down stairs wailing. I am now officially ready to snap but I go down and I gently rub his head, ahhhh baby, what’s wrong (while in my head saying, nothings wrong with you, you’re just a whinging brat) the phone rings, it’s my son’s OT, I must have sounded stressed as he said, did I catch you at a bad time. Em no just give me a minute (in my head I’m thinking, a bad time? when isn’t a bad time in this house with the incredible whinge around grrrrr)

I put Ryli to bed and continue my phone call, ahhhh it’s a lovely phone call as he has good news and we have a chat and gossip about life etc. I’m laughing to my self as Ryli is screaming in his bedroom the whole way through it, but I just ignore him as it’s getting more and more ridiculous with him every day. He is a mummy’s boy; I’m really not used to it as the other two couldn’t care less where I was as they would be playing away doing their own thing. (there are days I thank the lord for my asperger’s and autistic child) I think to my self Ah he must be my first neuro typical (normal child LOL. This is obviously what typical children do. When I finish on the phone I get him back up, I go down and DH is just looking at me saying, oh my god, he’s a lunatic, this child is seriously impossible. I ring my mum, Ryli on his way, I need a break from him, OK she said, bring toys lol

I get my Dept of Ed form posted, I get my shopping done, I come home, SILENCE, is this my house, am I in the right house? I have actually forgotten what it’s like to not have a baby scream crying just because he sees you and wants a cuddle. I have actually forgotten that before Ryli we had silence from time to time. I get talking to my hubby, we are laughing at how hard it is having 3 kids, 2 very close in age and so so different to each other. But yet how warming and lovely it is to have a baby at long last crave and need a lot of love, affection, attention and cuddles also. To see him share his interests, bring you toys with a big proud “play with me glow” on his face. To see him clap in excitement when he thinks he has done something really cool. To hear this little gentle (rarely but can happen) voice sing peppa pig and chuckle with excitement. To hear him ask constantly, where’s Ky, where is she? Where’s Luca, it’s so so cute when he speaks and smiles. But when he screams and tantrums, Jesus tonight, you’d think he was possessed.

So again I get that proud glow of mummy back onto me, ahhhh I have the cutest kids, my kids are so cool I think to myself etc. Then on the table I see a letter, Oh God, it’s from DCU. I’m terrified to open it and I don’t for a while. Ok that’s it, I open it, poor DH, he almost dies of fright with my scream and dance of joy. SHE GOT IN. Yes Ky was accepted to CTYI in Athlone. She qualifies; you see this course is for kids with really high IQ’s. It’s for gifted type children who need extra stimulation and interests. My daughter, yes my daughter got in. I am over joyed and just so proud of my little girl. You see she has been through hell last year and she deserves this. She deserves the rush of feeling special and hugely intelligent and most importantly, ACCEPTED.

It takes me ages to calm down; I’m just drunk with pride. I go onto FB and tell the gang. A flood of comments of congratulations to KY come in. There are no words to describe it, I’m just so so happy and excited about this journey my daughter is about to embark on.

I anxiously wait for her to get home from school, I tell her the news and show her the letter, she is just so excited, she almost picked me up off the floor and broke my back with the squeeze hug she gave me (she’s as tall as I am almost) She is dizzy she’s that happy, I think she taught that she wouldn’t have qualified as she really wanted this. She’s over joyed; she wants to take the letter to school tomorrow to show her teachers. You see in her head, she’s now a big kid, a college girl, she’s super cool.

My kids are far from perfect, and would drive you to need an institution at times. They are seriously hard work, all 3 of them, I think by far Ky is my hardest but Ryli is almost taking over that thrown of hers, poor Luca, he’s just Luca lol, he’s so easy going in so many ways the others are not. As I have always said, I love my kids unconditionally, even Ryli in all his spoilt bratness, I love them. I burst with pride when I speak of them, when I see them achieve something and just am stupid happy that they are mine. Even when they are pressing my last button like Ryli today, I wouldn’t swop them, change them or be without them for one single second. Oh and 1 more might just balance it all out, or have them visiting me behind a glass window with a view of my padded cell, either way I’m one seriously proud mummy of 3 today, and I’ll cherish this moment for ever.

Oh and the kick i needed to get back down to earth, i was just about to hit publish, no word of a lie, MAM, its Ky, puking into the toilet, yes she's caught the bug from the boy's., ah yes, of corse, you see this is my life, this is my house, these are my kids LOL. All i can do is laugh and just get mopping and cleaning. Seriously yuck.

My Seven

2010-01-18T12:01:00.001-08:00

There is a new blogging challenge, it is to write 7 things people may not know about me and things I have not blogged about before!

I’m not that interesting and was going to pass up on it, but I’m never one to shy and not participate, I’ll give it a whirl, be prepared to NOT have your socks blown off LOL

1. I’m from the North Side (wrong side) of Dublin. I’ve seen my fair share of horror while living there, I saw a man shot in the head and witnessed along with my friends the men that done it speeding away in a van. To my surprise it did not really affect me or my friends and we carried on as normal, as you do. I was 13 at the time.

2. I’m a jack of all trades I think. I worked in child care for years, moved into vetinary work and was a vet assistant, I done more than I should have been allowed and assisted in all operations and treatments, i then took a break when at mortgage age and moved into the land of IT. I worked for America On Line and then moved to Microsoft. I was one of the beta testing centres for Windows 98, 2000 and XP. This place was the coolest job ever and I loved working there. Our team from Microsoft is no more as HP took over Compaq and our team was moved and dispatched to different sections. I went back into child care when Ky was 4 and discovered the wonderful land of special needs from there.

3. I am terrified of any flying insect or animal. I once almost got smashed to pieces by a car as I ran onto the road to ditch a wasp. Hmmm 2 broken legs or the buzzing noise and sensation of a wasp, em, 2 broken legs please. I’m dreadful, I will abandon all, kids, buggies, you name it, I’m outta there and it’s every man for himself. This goes for flies, bees, birds, anything with wings.

4. I came home one evening with Ky aged 4, told her to run up to her bedroom and pack her bag for her nanny, to her and my horror, there was a bludgeoned man asleep on her bed, in a state that would make you vomit as he had pissed and shit himself several times. This man used to live in our house previous to us, his parents moved and never told him. He taught that after his celebration of getting out of prison that day, he would come home and go to bed, after his friends had bet him senseless. I stupidly hit him and kicked him, told him to get the F**k out of my house, to find blood all over me. He was arrested and nothing more came about of it as I didn’t press charges. I knew his brother and it was a genuine mistake, as Ky’s room used to be his room. I actually felt quite sorry for him in the end as his parents deserted him and left him homeless. Ky was traumatised for months but is fine now. I have to say I was stupid to hit him, and I really should have ran as he could have killed me or Ky as he was shot up on heroin at the time. My fight instinct took over my common sense on this one.

5. I am quite a good singer. I love karaoke etc. I need about 3 drinks first but once I get the mike I don’t let go of the mike.

6. I am a trained martial artist. I trained under Master Brian McCarthy of the Bujinkon Nimpo Brian dojo in Ninjustsu. I learned a lot of funky weaponry there and I do like to swing some nun chucks around from time to time. I have really strong lower body strength and I can kick a dude a fair distance. I am also quite fast with locks and blocks. I loved Ninjustsu, it became and still is a huge passion of mine. My only regret is that when trying to conceive with Ky I gave it up as it was dangerous and demanding. I was really high up in it and id love to go back but I doubt I will now, maybe we’ll see but I love to show Ky and my husband new techniques and I will also show the boy’s so that should keep me busy and still involved in it.

7 I met my husband about 15 years ago. I was all set to move to Germany as an au-pair and was picking a family etc. I had always wanted to live in Germany, I have no idea why, I always wanted to learn the language and I just loved everything about the place. Just as I was about to sign with an agency and get my family I met my husband. A German man who had been living in Ireland for about 9 months. His plan was to work in Ireland for a year and go to the country of his dreams America. This plan of his was also almost in action. Low and behold, we moved in together almost 6 weeks after we met and got engaged, we debated on a country, chose to stay put and started planning our first child Ky. I do not regret a single minute of it.

Would I Cure My Autistic Son

2010-01-18T04:56:00.000-08:00

I would have to say NO to this question.

I accepted my son a long time ago for who he is, what he is and how he is. You see I love my son and my children unconditionally. If I was to want to cure him, than surely I’d have a condition of my love for him.

Luca is a happy 3 year old, stubborn, wilful little boy. He has no speech; he has sensory processing disorder and ADHD on top of his autism.

I long to hear Luca’s first words and I pray every day that I will someday. It will probably be one of the most wonderful days of my life. I say probably because I don’t know if it will. You see I have my children’s weddings, the birth of my grand children and all of the typical stuff to look forward to, that yes you think will be the best day of your life also. So it will be one of the best days of my life for sure.

Luca will talk some day I’m certain of this, it is coming, am I in a hurry, NO I am not. You see if I rush him, force him, or try and drag the words from him, he might not like talking, he might associate talking with cruel taught’s and tricks for treats, with force and against his will, he might decide he preferred it when he was silent, and resort back to that time. You see Luca has feelings just like me and you, he has memories and he has taught’s just like you and me. I don’t want him to think it is required that he speaks, that it is a condition I have of him. I want to him to find his words in his own time, realise for himself that he can use his voice; I want him to enjoy finding it and expressing it and himself. I will praise every attempt, I will help him and assist in programmes he needs to follow, but I will never force him or rush him.

Would I like to cure his sensory processing needs? Again hard to answer, you see his senses work differently to ours, they cause his body to feel, hear, taste, smell and work differently to ours. Would I like to make his sensory processing needs easier for his body to handle, yes I would, and Occupational Therapy will help with this, and me assisting with the programmes again made for Luca will encourage this, and is helping him so much. But cure it, no I would not, as no one has a body that works perfectly, everyone will have different sensory issues to every one else, this is what makes us unique, stupid but yet simple example: some might love the smell of poison perfume, I hate it, it almost makes me pass out, how boring would it be if we all liked the same smell, tastes, god I couldn’t imagine living like that. I love deep pressure and massages, my husband hates it, he is super ticklish as is Ky, my self and Luca are not, Ryli is somewhere in the middle. I love garlic; DH hates it, I love swimming, DH loves walking. We are all different to each other and its annoying at times but interesting.

Do I fear for Luca in the future, I simply can not answer that either as I do not know what the future will bring? I have no idea what way Luca will be in 2 4 or 6 years time let alone as an adult. For all I know, the world will be half / half. Half the population could be non typical, and half typical. Do I think Autism will be more acknowledged, accepted and in some cases appreciated, yes I do, if we have all of what we have now for our children, if we keep fighting and making our selves heard in our fight for improvements, resources and therapies, can you imagine what we will have for our children in the future. If we educate people enough on our children, their condition, and what way their mind’s work, at least we put information out there. If they don’t listen, so be it, but we said it, who knows if although they might think what you said is ridiculous or untrue, you can be sure they will say it to someone else who will say it to someone else etc etc

Therapy and intervention is the key to unlocking our children’s potential, what ever it may be. With this they will learn life skills, social skills and learn at a pace they can cope with. No one in this world is perfect, at least not in my eyes, so why should I want my children to be perfect. I see people crave perfection, take the celebrities. They are already pretty, but they have a need to be perfect, they get a new nose, face lift, put crazy shit into their lips and come out looking like a pit bull who got stung on the mouth by a wasp. They do so much irreversible damage by craving perfection. If that’s what perfection can do to you, I know I’m happy being just who I am, soooo not perfect.

I don’t agree with a lot of ABA methods when teaching our Autistic children, but I wouldn’t argue with a parent that did. I do not think the gluten diet or casein free diet is a cure for Autism but if a parent wants to go that route, I would not argue with that. I do not think bio chemical treatments, and electronic wave treatments, swimming with dolphins etc etc will lead to a cure for autism, but if that’s what people want to do, go ahead as I am not in any position to know, say or educate otherwise. I only know what I know from my own children, I can only speak on behalf of my own children.

Would I cure them, no I would not as I am happy going on this journey with them, learning from them, experiencing the world differently through their eyes and guidance. The Autistic world isn’t that scary, in fact I sometimes envy it’s simplicity.

It’s a nice world at times, I think of it as a different country, they speak a foreign language to me, but yet I have learned and can remember a lot of the language, its just this is a different dialect, I can catch most of it but some I cannot, but I try, I go over it in my head and imagine it’s meaning. I could be wrong completely, but at least I tried to translate it and figure it out, better than staying lost and ignorant to it. I’d like to holiday in autism land and learn their language. I’d like to take some of their culture and use it in my own day to day living.

There is a lot we can learn form them, like how to chill out more and take a time out, how to stay ignorant to mess and not worry so much about being so clean and tidy. To be selfish and just refuse to comply with someone else just because I want to. To loose my voice for a week or 2 and be able to be silent and not have to communicate with anyone but myself. I would like to incorporate a lot of that into my own self, I long for the day that I can be as blunt and ignorant as I want to be, if I do not like someone, simply say, I don’t like you, oh to be that direct and not care about it afterwards. I would love to be able to tell a smelly person just that, that they smell, go take a bath as you stink. Can you imagine being able to be that direct and not care? Maybe than the world would be less bitchy, or maybe gun rates and murders would be up, who knows :0) I don’t know but I sure do have a lot of respect for the Autistic frame of mind sometimes.

THE GOD COMPLEX

2010-01-13T13:35:00.000-08:00

Where do I start with this one, I’m so angry I know all of what I want to say but cannot process it at the same time

Ok Yesterday I received a letter from the mental health services team KY was attending. This letter requested a meeting with my self DH and KY. They had received a letter from my (in the process of being ex) doctor requesting they review Ky. Now this doctor knows only too well of what I have gone through with the Dr George and how hard I’m trying to keep KY from attending their services ever again.

I receive a phone call today. It’s Mr High Almighty himself, Dr George. I say, ignore that letter you received from my EX doctor, I don’t know why she sent it to you, but KY does not need a review. I then get told that it was requested so I really should follow through with it.

So here we go, remember we absolutely hate each other.

Mr George: I would recommend you come meet me this Tuesday as scheduled with yourself, DH and KY.
Me: No it’s ok, as we discussed previously, Ky is no longer with your services, let’s leave it at that.
Mr George: Well she has not been completely discharged so we’d like to see her.
Me: No I will not be attending the meeting, please release her completely from your services so she can go to the local community services, as we previously discussed.
Mr George: Well I’d like to meet with DH before we completely discharge her.
Me: No that will not be necessary, anyway, KY has been assessed by a full Multi Disciplinary Team in Dublin and has been diagnosed again with Aspergers, there is no point in you messing my head up anymore again as you did previously, release her please.
Mr George: I disagree 100% that KY has Aspergers, and I’m really worried for her that you are hell bent on dumping this label on her.
Me: Listen Dr George, you go and accuse me of whatever the hell you want, this is an endless argument and I am in a position now to tell you that I have suffered enough mentally and emotionally from your accusations against me, so for mine and my daughters sake, I no longer wish for you to have any involvement into my daughters medical care.
Mr George: I did not accuse you of anything like that but I do feel that you are more interested in sticking a label on your daughter than anything else
Me: Yes actually, you did just accuse me, and it’s your opinion and we’re all entitled to one, as I have a very big one of you also. You go ahead and accuse me of what you like, but tell me this, Why should I accept your diagnosis of my daughter over 4other extremely professional Psychologists and Psychiatrists, what makes your diagnosis valid when 4 others disagree with YOU, and after 2 cognitive Psychological assessments and a full Multi D should I accept your opinion of my child. Again I will bring to your attention that you have actually NOT EVEN ASSESSED my daughter to begin with. You already know the ASD links in my family
Mr George: I’m not going over this argument with you again Maddie, we’ve been here time and time again
Me: Well then release KY as you are not going to do anything for her anyway, why leave her in your service, you will never accept that she has Aspergers so release her and that way she might get something in Community
Mr George: Well she won’t get anything there either so I don’t know what your going to do for a service for her.
Me: Well then I guess I’ll just have to do everything for her to guarantee that she gets the help she needs, after all I’ve been doing it for years so what’s the difference and I HUNG UP

What else could I say or do. So only god knows now what will happen with KY.

So the GOD COMPLEX. Why is my daughter suffering because this asshole cannot get it into his tick head that my daughter has Aspergers?

Is it me, am I the mad one. Could I in fact be wrong? Was I hell bent on a label and not the welfare of my daughter? But surely the welfare of my daughter is what led me to this label? I’m really confused. I truthfully am really confused. Is it me?

Look at what put me here:

1. KY was always different and difficult.
2. Playschool start to comment on her mannerisms and behaviour
3. All the women in KY’S life think she’s peculiar, difficult, mental (my sister lol) people are offended by things she says, taken aback by what she’s saying, annoyed cause she can never sit still, puzzled at how she takes everything literally and concrete.
4. People notice that she talks about the same thing over and over again, even thoe she knows the story off by heart.
5. The school start to pick up on some social skills issues, shy timid fearful fretful anxious nervous
6. She has fitting in problems when we move to the unknown, she gets into all sorts of situations she never got into before
7. New school pick up on more issues, offer a NEPS Psychological Assessment which hints at Aspergers
8. She is the diagnosed with Aspergers in the shed by the Prof (this is an auttie clubs name for this man and his office)
9. She is undiagnosed by Mr George, he tells me that KY is suffering from self esteem issues and confidence issues due to her brothers autism, the impact it has on our lives, the move from Dublin and my relationship with her, we are supposedly forever in conflict and fighting mode. BUT WE ARE IN FACT NOT, murder breaks loose, confusion, heart ache, pressure all mounts up and I snap and loose it all and almost end it all
10. I give up and put Aspergers crap behind us and move on accepting nothing is wrong
11. A resource teacher with 30 years experience of ASD teaching raises suspicions of the spectrum again
12. I try to ignore it but more and more develops and more suspicions and issues come to light
13. Ky is assessed by a diagnostic Multi D team in Dublin, she is again diagnosed with Aspergers

What am I supposed to do? What am I supposed to think? How am I supposed to cope? I’m really not a machine, I’m a human being who physically cannot take any more and I’ve been emotionally scarred that much there is no more room on my body for any more scars. This man is manipulating everything I said to him, twisting events, blaming my autistic son for KY’S behaviour, twisting my self and KY’S daily battles (homework, dressing skills, morning night and daily living issues) into some extreme fighting between us, causing us to have a bad relationship, there is no such thing. We fight due to homework battles, KY getting out of bed and going to bed, forgetting stuff like school bags etc. He twists everything I say and rewords it. He even had me thinking that I was in fact a bad mother and made me hit my lowest point in my life.

How the hell do I bounce back from this again? I’m again doubting my self, my daughter and again her diagnosis, but why? Why am I feeling this way? How can this one man have such an impact on me?

I am positive that KY has Aspergers. I am sure she has ADHD. I’ve known for years to be honest that something was not right with her, but yet why is it so hard to get help for her. What makes this man so important and self righteous? Is he a bully, a spoilt brat that mummy couldn’t say no too? Is he just used to getting his own way and not having to cope with people standing up to him? Does he in fact need his own Psychological and Psychiatric assessment?

I really don’t know but he has a way of getting under my skin and hurting me deeply. I hate him, my daughter hates him. I hope I never have to hear his voice or see his but ugly face again.

THE GOVERMENT, DOCTOR’S AND MEDICAL BOARDS

2010-01-10T04:02:00.000-08:00

So you’re battling to fight for services for your special need’s children. Hmmmm who can you turn to for support. First point of call, your doctor, surely.
I am in the process of appealing a decision for my child to be granted DCA. This is an entitlement given to children with a special need who require more care and attention than that of a typical child their own age. This is given to my son at present that has severe Autism. My daughter has Aspergers and ADHD, so surely she would get it also, well no; apparently she is not seen as a qualifying child. Surely as she has a special need, this alone would entitle her, nope, absolutely not.

Ok so she is refused twice, I appeal twice, one appeal denied, one still going. So with an appeal you supply all supporting evidence to help you get this benefit. I ask my doctor for a letter, her response: they will contact us if they need anything. Ok no, I need you to write me a letter supporting my application. Oh we don’t do that.

WTF, is your doctor not supposed to support you and your child, we are both her patients. You see I’m convinced my doctor thinks my darling daughter is simply bold, a brat of all brats. This woman will agree that I am at my stress limit. She will agree that I need a holiday, a break from the kids, a rest, a massage or 2. She says this with the fullest of sympathy and empathy.

My doctor was born into a very wealthy family, you know the type. All of the family were doctors etc. She’s a lovely woman and unless you need a letter, a great doctor.

She has no kids, drips in gold as do all the family. But yet she can’t even scribble a few lines together to help you get a benefit she more than knows you need.

My daughter is 9, she needs help to get dressed, have a shower, bath, she needs more help with homework than a child her age would. She needs to be listened to very carefully; she needs things explained in great detail. DD also needs support with her illness as it does affect confidence and self esteem. DD has speech and language and Occupational therapy needs; she is still on a waiting list for this. DD needs a lot of help DAILY.

Her IQ is extremely high which causes her to become bored which leads to frustration. She suffers mood dips frequently due to this. She needs constant entertainment, constant movement as her body does not regulate like ours, and her sensory processing problems are through the roof. Her pincer grip is very week and the muscles in her hands also; she needs help with a knife to cut food. DD can become quite hyper and out of control when she gets over excited, giddy or during play she will become rougher and rougher, leading me to control her before the carnage starts. You see her ADHD is very controlled by her Aspergers, I am lucky, but once it breaks free it’s a nightmare, and it breaks free daily but I bring her back under control.

DD does horse riding which helps her body regulate, but it’s an hour’s drive. She goes swimming, but in this weather and with all the flu’s near impossible at the moment, again its a 20 min drive. I bring her to play dates, play centres, all this to help her regulate her body and brain stimulation. This puts enormous pressure on me as its driving, with my other kids along for the drive. This aggravates one child as he prefers to be left be and in his own company, this is not too bad on the baby but means he has no routine and is dragged from pillar to post and is being reared inside a people carrier.

You see Aspergers may not be seen as an illness that requires more care and attention than a typical child her own age by the HSE. But by me, I find it harder to deal with than Autism; I am emotionally, physically and mentally drained by Aspergers and ADHD. I am doing everything I can to help my daughter with her needs. But this goes completely unrecognised. Therefore I do not get her DCA payment. I am disgusted by this, as I am run ragged looking after this child, on top of my other 2 children also.

So I made a decision to change doctor, I’m hoping this new doctor will give me the support I need, That she will understand my life, daily tasks and emotional, physical and mental health. That she will see my daughter for what she is, a differently abled child who needs support and assistance in her daily living skills and environment. She might even decide to scribble a few lines together to help me get benefits, therapies and services for my daughter.

I am disgusted at the lack of support us mother’s of special need’s children receive. It is a disgrace and this country along with it is a disgrace. I know were in a recession, but my daughter is in a bubble called Aspergers, this bubble will never burst. She will never break free from this illness; it is with her for life. She will develop skills to help her succeed in life, her challenges will become less challenging, she will go on to have a good job hopefully etc. But this will take a lot of support, therapy and education along the way. Why can’t they invest in the children when their young instead of casting them aside, ah we’l deal with them when their fucked up and going further into frustration, depression and have lost their confidence and self esteem. Yes let’s leave it till then, hey it will cost a fair bit but look at what we save in the long run by denying DCA, carers and respite benefit. Happy days for the government and a quick save for them.

What really annoys me the most; you see ads on the telly, LOOK AFTER YOUR MENTAL HEALTH. They highlight the consequences if you do not. The consequences are scary, especially when you know them yourself personally. These ads to just hit home even more how important it is that my daughter looks after her’s also, a fear of bipolar development also hits home. These ads are even on the radio, it begins to haunt you, it echoes in your brain. I will keep fighting for my daughter’s DCA and I will continue to fight for everything she should be receiving, it may damage my mental health in the process but my daughter is my world, as are all my children. With this DCA I can enrol my daughter in summer camps, college coarses to help keep her stimulated and mix with children just like her. I can continue to bring her horse riding which will keep her muscle development in check and her body regulation under control. I will bring her swimming to help again with these needs and compliment her therapies when she actually gets them. I can bring her on more social outings to help her social skills, her emotional and mental well being.

To the government: Invest in the kids while their young you ignorant bunch of twits, help alleviate the problems before they become so extreme that it is too late for them to be helped. See the problems for what they are, understand the struggles this illness brings, and help the families who are struggling so hard to help these kids. Invest in these children as their intelligence will be what keeps this country afloat, these children are our future. Researchers, Scientists, Engineers, Mathematicians, subject specialists are all listed as the jobs our intelligent children could venture into. Who needs these people the most, our doctors, our government, our teachers, our environment, our whole country needs them. How little respect they show them while they are young thoe is appalling? Shame on this government and shame on anyone who disrespects any child with special needs. Ignorance is bliss till it kicks you up the arse.

The Work place

2010-01-08T04:55:00.000-08:00

Ok just last night I was talking to my husband about my recent blogs http://mandiedempseys.blogspot.com/ The Fabulous Mr Luca. He was telling me he had been reading them and that they are very good etc, i was delighted as this meant the world to me, when as usual a child interrupts our talk and it was cut short. As child is sorted and finished with I was expecting to get back into our chat.

DH walks off to have a shave. He did not realise that i probably wanted to continue my chat and as were so limited for time he had to just grab his shave while he could, he was probably actually trying to get it done before he in fact forgot to have one. This pissed me off a little as this chat was important to me, I am so proud of my blogs and the comments, praise and support I have received through them has left me over whelmed. He then wondered why I was slightly snotty and would not go back into our conversation when he remembered we were having one. He felt bad, i knew this but i just lost the moment of excitement to actually try and get it back was redundant. You see our lives are full of interuptions, just for us to actually sit and chat is near impossible.

So today I decided to brace the conversation again. I was putting Ryli to bed for his nap and I said, I’m going to jump into my bed and write a blog while all is quiet. If you need me message me (he is on messenger down stairs) You see until writing my blog I actually did not realise how hectic and hard the last 4 years of my life have been, and part of my new years resolution is to loose 2 stone, exercise more and take time out for my self when I can. (Ryli’s nap time, long may it last)

I decided to say, in work people are lucky enough to occasionally have someone tell them how good of a job they are doing, they sometimes get little rewards in the post (usb sticks, crap really but nice to get) They also get to achieve things like passing important exams, praise by email from a manager or customer etc. Although he has a major stressful job and the added stress of our families circumstances he also rarely, but does occasionally get these rewards. I know we have mothers day and he spoils me rotton, and although he say's thank you and tells me how good a job with the kids im doing, society does not, my job does not.

I then explain that in my job, fully qualified mother, carer for 2 special needs children and house wife, I get nothing, no thank you, no pat on the back to say job well done, no rewards etc. I then describe how most of my days are filled with grief, fighting for appointments, entitlements, services for the kids etc. I am a mini bus that drives them to all the therapies, activities, play dates, and I am provider of entertainment to our children also. I am then a chef, a cleaner all of the usual motherly jobs that we all do. Where is my pat on the back, job well done etc.

I then say that the comments on my blogs are this, the emails I receive telling me job well done etc. He then goes on to explain that "you think I get this, I get nothing but abuse, stress, bla bla, . You see DH receives some praise, rewards, messages of job well done, as each time he gets them, he shows them to me, and i do be be delighted for him that he has been so appreciated, he works really hard and deserves them.. Its actually not enough considering how hard he works, but it is some. I don't think he really realised where i was coming from. It wasn't about that he gets some, it was about that he actually gets appreciated from time to time. I was simply pointing out the difference between appreciation in the work place, which us mother's do not have. We are secretaries, PA's to our children, we are managers, we are everything the workforce employs. But we recieve nothing, no praise, no nothing.

I am fortunate to have a husband, i do not rare my children on my own like some mother's do. I appreciate every little thing he does. He is so helpful to me, he loads / unloads the dishwasher, puts the wash on, wash in the dryer etc. He also changes nappies, put's the kid's in a bath. His bond and relationship with Luca is such a gift to watch. He also gives me the opportunity to run out the door for a break while Ryli is asleep, or go for lunch, as he will take care of Luca when he is dropped home from school. I am eternally greatful for this help. Without it i would well and truely crack up. As far as husbands go, i am one very lucky woman. I know all of this. I appreciate every bit of this.

You see I wasn’t always a mum or a carer to my children. I worked in great jobs. I studied and done extremely well in all my exams. I trained under really hard and tough conditions to work with Adults and children with special needs. I had a job, I had a life, I was choosing my career until suddenly it was taken away from me. I did not choose to be where I am now, I had ambitions, I have a really good head on my shoulders, and I am a very pro active, responsible and a determined person. I had this taken away from me. I plan one day on getting it back, and starting all over again, but for now I can’t. I sit and try to figure out way’s that maybe I could work around my families circumstances and get a life back for my self at the same time, truth is, it simply is just not possible right now. But I can do this, I can write blogs in my spare time and I can be proud of it and I can enjoy it.

I miss the exam results coming throug the door, the rush when you see 70% 80% 90% or 95% on a paper. I miss a boss telling me i done such a good job, or that my idea was really good, or that i was improving more and more eack time etc. Why can't we have a boss to tell us this, we work so hard in our daily lives that a bit of outside praise would be amazing.

I love my children and i have a wonderful husband, but i think our husband's will now have to be our boss, they will have to make it their business to tell us job well done, not for being a mum, i recieve this and i love that my husband tell's me this regurally, but job well done for our other job, you know the fighting everyday, filing, phoning, appointment making, appointment attending, hospital visits, that job. We will have to schedule a time where we can chat without interruptions about our tasks, workload, stats lol. My poor hubby will have to take the added pressure to tell me job well done, i will also tell my husband about the work he does, and how much i truely think hes an amazing dad, and worker, i will also tell him, job well done. cause we really need it.