the fabulous mr luca

The Fabulous Mr Luca Part 16 oh god luca, luca

2010-08-14T08:59:00.000-07:00

My self and KY have connected on a whole new level, were even closer than we ever where. She looks to me a lot more for guidance and support as she knows she can trust me with her feelings and knows that I actually do understand more about her than she taught and that im learning as much as I can so that I can help her more.

We go horse riding and do private lessons together, she loves this, She’s very nervous after the fall from Snowy thoe. But big brave Ky, she got right back up there and she’s riding like a dream. I am shitting it but loving it at the same time; I fall in love with a horse called Bertie. He’s huge thoe and im still so nervous; it’s a lot higher up than I remembered lol.

Things were falling into place, it was still hard but picking up at last. Luca had found a new tutor. I really like her. You know when you meet someone for the first time and you just instantly like them, and you know your child will too. Well that’s the feeling I have with this girl. She’s perfect for Luca. She didn’t come through my door with a big glowing CV, she didn’t make out she was anything more than who she was. She took on board a lot more than the position for a tutor bargained for and that’s why I respected and trusted her, she wasn’t in it for anything but to help my child any way she could. I love this girl.

I was off to a lesson I booked just for me, it was part of my time out while kids in school. Part of my road to recovery. I drop Ky to school, but Luca is still asleep, he has a cold and had a rough few nights so I just taught he was catching up on some zzzzzs. I tell Vilma to listen out for him as he should be up soon. I got back from school run, but Luca is still asleep. Did you ever get a horrible eerie feeling take over your body? I am afraid to open the door to check on him, in fact im terrified but why?. I go in, all your worst nightmares before your very eyes, im numb as I process what I saw. OH MY GOD, VILMA CALL AN AMBULANCE NOW. My child, my beautiful baby boy was dead. I taught he was dead. Im trying to compose myself but I can’t. I get it together, his lips where blue, I couldn’t move them; it was like rigger had set in, his eyes were blank, expression less, and he was so cold and stiff. Luca wake up, please just wake up. I know first aid, you stupid woman maddie, you know first aid. I lay him flat, I give him mouth to mouth and compress his chest, Luca please, Vilma is on the floor screaming, right she’s doing all the panicking for me, I can concentrate on this. I grab my phone, ring the ambulance while I gently shake Luca and rub his chest roughly.

Oh my god, a gentle week cry, oh god, he’s alive, Jesus , Luca stay with me baby, Luca, come on, don’t you dare leave me, im keep annoying him and prodding him, Luca, Luca, stay with me, STAY WITH ME. The ambulance comes, straight on the stretcher and hooked up to machines, Balinasloe hospital here we come (AGAIN)

Its all good, he’s still white as a sheet but some colour is back in his face. The nurses check him every 10 mins, I ring DH, he is barely able to compose himself. Luca is his life, you have no idea how much he loves and worships this child. He races home from Dublin (he was working as he does there once a week, every week) He even almost hit a swan that decided to park it's arse on the m6 for a rest. Mental traffic, I taught I was going to get news that he too was in a hospital bed, I was sick with worry in every way.

Luca is observed day and night, my husband had his net book and 02 stick in his bag from work, and he left it with me in the hospital as he knew I wouldn’t sleep a wink watching Luca constantly. Ah netbook, I can talk to my FB girlies, no better women for a time like this. Andra had been down this road so many times with her own son, she walks me through every step of a seizure, I never felt more comforted than I did that night, all my girls were just short of hugging me for real and holding mine and Lucas hand all night.

The Peads team came round the following morning, they asked their questions etc, we’ll be back soon, they were setting up and ECG for Luca. Believe it or not I had an appointment upstairs in the same hospital that morning. I had a kidney stone earlier that month which caused me horrendous pain and I was to be booked in for a ct scan. I went to see the Doctor, there is a huge queue. Your having a laugh, I can’t sit in that. DH is downstairs with Luca but I wanted to see the Doctors as you know your self, men are brutal for things like that.

I tell the nurse my situation, she gets me in next, ah woman I could f*****g kiss you right now. The doc is talking away, I have no clue what he’s saying to me, he asks me am I on the same planet, nope, I explain all, Ok we’ll book you for a scan, anything in mean time call us, get back to your son, thanks see ya. I boot it down stairs or up, can’t remember lol.

The peads team came back around, they will book Luca in temple street for an EEG, they tell me they will never know cause or if it will ever happen again. What kind of an answer is that, oh that puts me at ease. I understand it thoe, they cant, how can they. Luca is allowed to go home as ECG was normal. Thank god.

Both me and DH don’t sleep for weeks maybe months after. Im afraid to sleep, we take it in shifts and we watch on a baby cam that has been in Lucas room since birth. Every time I nod off I wake up with nightmares, he’s dead, he’s dead. DH having to calm me down and I run to monitor to check, I cant function anymore, my worst nightmare actually almost came true. I’ve never been more terrified in my life. The taughts of loosing one of my children or harm coming to any of my children terrifies me. How do you recover from this? I get lots of advice and support from the girls and Andra especially.

Posted by coolkid at 8:33 AM

11 comments:

Petunia said...

God Mandie, reading this again brings back the horror of a seeing your child like that. I will never get the image of Munchkin, blue, stiff and lifeless after her seizures not knowing if she was going to breath again, and the hours of sleeping afterwards not able to be woken... I just thank the stars that she only ever had two and don't know how Andra saw her poor baby have so many and come out the other side! I remember the night in question and the girls rallying on FB wanting to know how Luca was and if you were ok. As you said, if we could have reached through the computer to hold your hand we would have xxx

January 4, 2010 8:56 AM

Jen said...

Don't know how you are still in one piece girl!

January 4, 2010 9:00 AM

Taz said...

oh god, mandie - every parent's worst nightmare! what an amazing story xx

January 4, 2010 9:02 AM

Andra said...

Mandie, it is every parents worst nightmare and quite a few of us have gone through it here, I am just glad I could help you in a very small way get through that night, sure isn't that what this fb autie group is for afterall, we can never under estimate the help and support we receive from one and other, its what keeps us all going. xxx

January 4, 2010 10:15 AM

popsie said...

that sounds like a horrible experience but your little one is lovely in the pic above, am glad you had support at such a stressful time x

January 4, 2010 10:55 AM

popsie said...

hope your feeling better now. what a terrifying thing to happen, glad you had support when you needed it x

January 4, 2010 10:58 AM

Jean said...

Ah Mandie what a complete nightmare...Im so glad he came through it OK XXX

January 4, 2010 11:36 AM

Sandra said...

God I am here in tears at the thoughts of finding one of my baby's like that. Can't imagine what you went through

January 4, 2010 11:59 AM

Looking for Blue Sky said...

It was my worst nightmare when my littlie started to go blue on me in Temple Street. I'll never forget it, I screamed and screamed, and doctors and nurses came running from all directions. It must have been so much worse for you at home, I'm just so glad he pulled through for you xx

January 4, 2010 12:04 PM

Blondie gal said...

Mandie, I just read your last few blogs and have a lump in my throat. Am at a loss for words but Luca is a little battler and I just wanted to say I really admire your strength, the very best wishes for you all for 2010.

January 5, 2010 11:09 AM

Anonymous said...

Jesus mandie, look at how pale he was in the photo, cant imagine how it must have felt, glad i was able to get to see ya after and we had that night out xx

Axx

January 6, 2010 3:31 AM

The Fabulous Mr Luca part 6 , the bubble bursts

2010-08-14T08:57:00.000-07:00

What could possibly go wrong, life was really going great. A new law came in just as Luca was referred to the Brothers of Charity; unfortunately Luca fell under this new law. All Children must under go an Assessment of Need Process and must have a Psychologists diagnosis before they could be referred for services. Oh no what does that mean for Luca, what now, please no more, I really can't take anymore.

Luca had been placed under the Assessment of Needs act as recommended by my Public Health Nurse. This is why he got his referrals so quickly for Orthotics, Physio, OT and SLT. So what now, the only thing missing was a Psychological assessment, we need a diagnosis on paper before the Brothers can take him. Ok what was that name the ABA Psychologist mentioned to me again, grrrrr what was it? I rang her up, ah Prof. I log onto Rollercoaster and ask questions, wow was he a popular man, both in a negative and positive way. I rang my Pediatrition, would you recommend this man, Yes he would. I rang the professor and he was lovely, he gave me the number for his secretary and I made the appointment.

We headed to the Prof, we got lost in our native county, how embarrassing. We got there eventually. My nerves were shot, here we go again, another assessment, another diagnosis, I can’t take this, why is it so complicated to get a diagnosis in this stupid country was all I could think of. My husband’s nerves were well gone; he had resorted to biting the skin on his fingers as no nails left. In we went, oh god, my stomach in knots.

The Prof is a well dressed dickey bow wearing man, I find him so interesting; he’s as odd as they come but very interesting and eventually pleasant and charming. He looked at Luca happily sitting in his buggy without a care in the world, he kneels before him and speaks softly to him, Luca makes no eye contact or emotion, he just pushes him away, and for a 22 month old child he got some power in those arms and legs of his. He then asks me all about the birth, development, my family, my self, DH’s family, himself, My genetic history, yes autism all round me along with aspersers, adhd, bipolar, the whole 9 yards runs through my family history. After a long bout of chatting I get handed page after page of information, what’s all this? Ah i see the words Autism highlighted everywhere, and there it was, Autism diagnosis, report in a week. As I was leaving, the professor said to me, who is your paediatrician, as he was skimming through his report, i told him his name, stick with him, he knows his stuff, your son is in good hands there, I could only smile in agreement, yes I taught the very same thing.

I was happy as this meant we could put Luca back into the Brothers services. Things could get back on track, happy days were here again, or so I taught. I had my report within the week; here you go HSE, oh but Maddie they will not accept outside reports, he’s on waiting list for HSE psych. The HSE Physio hands me a further blow. Luca's feet so severe that if it's not corrected he will need surgery, fine let’s correct it. He needs paediatric boots, 200 euro, ok I can do that, he also needs night AFO's (leg splints. think forest gump) they will cost 1800 euro, WHAT are you guys kidding me, I’m sorry I just don’t have it, I’m starting to seriously break down now, its all too much, I so cant handle it all, I leave and drive to my mums where I sob for hours, I’m not a crier but did I sob. I can’t do this anymore mum, it's just too much, it's so unfair, he’s just a tiny baby still and all this is happening to him, us, why poor little Luca, oh mum what am I going to do.

I go to see my public health nurse, oh shes a wonderful woman, what would I do without her, i love this woman. She advises me to get applying for a medical card for LUCA, she tells me all about DCA and carers allowance, she advises me to ask the community welfare officer for help. I go to see the welfare officer, she tells me medical cards are impossible to get now a days but she’ll do her best, I break down in her office, she’s a lovely woman, she explains how she has seen too many families go through similar, the help we have is useless but better than nothing, she gives me all my forms, I send them off.

Another blow came, A comminity nurse was now Lucas key worker. He has a new nurse, I don't like her, no this won’t work, no no no. I try and bear her one more time, ok no, why? She tried to take my poor sons bottle (his only comforter) away full stop, oh no you don’t sweet heart, Chewy tube only, yea you think, erm hell no. I explain, Luca also has a question of ADHD hanging over his head, he is hyper, when he falls (several times a day) his bottle is all that will calm him down, he will only sleep when he has his bottle, he will only sit in a restaurant when he has his bottle. Luca suffered from extreme fits of frustration also, he head banged severely causing injuries to us and him, he almost knocked himself out on the tiled floor, and we had to take him to hospital where he was sedated. This was so regular that I was given a prescription for chloral hydrate so I could sedate him my self in emergencies. Could you imagine my son with no bottle to calm him down, what hell would my life become? Believe me when you’re sedating your 20 month old baby its no joke, its scary, it’s emotionally disturbing, it’s sometimes criminal. I verbally and officially in writing insisted that this nurse be taken from my sons services. I have to say, one letter and she was gone, my old nurse from the Brothers of Charity was back, thank god.

Good news, we get a medical card for the whole family, we got DCA, I get carers and respite, all backdated to when he was 1, I’m in shock, I also get incapacitated child tax backdated to when he was 1, I’m in shock, my luck is changing again. The Assessment of Needs Officer rings me, Professors report accepted providing I put his AON on hold, I can reopen it any time, he can go straight to Brothers services, WHAT oh my god, thank you Lord, Thank You Thank You Thank You.

I’m told all about Home Tuition, i put in my application, not a hope, must be 2 and a half for 10 hours and 3 for 20 hours. New fight but I wasn’t going to win this one, and i knew it, these people were just assholes through and through, the only thing beating was a cold pulse, no heart what’s so ever. Ok I’ll accept it; battle lost, but mark my words, department of education, I WILL BE BACK, GUNS BLAZING.

Luca gets his boots and night afo's, their not as bad as I taught, their quite cute. They have pictures and all on them, would he wear them, would he heck. They lasted a whole week, he is sooo lucky I did not have to pay for those things, grrrrrrrr he even bit a chunk off them, don’t ask me how he did that, he is nicknamed jaws in this house as he bit everything and everyone in site.

Luca is now with a new orthotics team, a new Physio, the same OT and the same SLT, I’m so happy, he is officially under the care of the Brothers of Charity services. Again our luck is changing, another battle won, another step taken up the ladder, were on our way through this mess, were doing well, we almost lost it, we almost lost all faith, all hope, all sense of reason, but we made it, we have war wounds but we made it, were smiling and were happy with all we have achieved

Posted by coolkid at 7:53 AM

9 comments:

Jen said...

I am gobsmacked at some of the idiots you told us about and in awe of you :D:D:D

December 13, 2009 3:09 PM

Anonymous said...

I coudnt go until i read it well done cant wait for more Keep up the good work xx

December 14, 2009 12:47 PM

Anonymous said...

mandie im loving it xxx

December 14, 2009 12:48 PM

Anonymous said...

jaysus woman, you are a powerhouse

December 14, 2009 12:48 PM

Anonymous said...

Dr Curran is GREAT! keep em coming mandie!

December 14, 2009 12:49 PM

Anonymous said...

wow mandie, thats great writting, fair play to u for being so brave. Ur an inspriation to any mother to keep going even when the chips r down...beautiful pics of the kids too!

December 14, 2009 12:49 PM

Anonymous said...

Hi Mandy and Guido,

I am sorry about your troubles, sure there will be better times. Keep your heads up and try to be positive. Maybe it helps to know that we are or were going through a similar thing, so we feel with you. Ups and downs, denial and acceptance, analyzing and loads of doctor appointments. You are great parents, dont forget that.

December 14, 2009 12:49 PM

Anonymous said...

hi mandie, im loving your blog, Keep up the writing, im waiting for the next installment..

December 14, 2009 1:06 PM

Anonymous said...

he was such a happy little dude thoe

i wouldnt have spotted any of it

A xx

January 6, 2010 3:56 AM

The fabulous Mr Luca part 5 (the road to diagnosis)

2010-08-14T08:55:00.000-07:00

My self and DH were just beside ourselves as it finally hit home, oh my god, this is real now, no guessing, wondering, it’s really it. The time we knew one day we could face was here. Were a great couple, really strong, determined and positive people, we’ll survive. DH read that most parents of Autistic children end up divorced, he made me promise we wouldn’t let this happen, he made me promise to fight it together and not against each other, stay strong, and be there for each other and our kids.

I got my thinking cap on, I rang my contacts in Dublin, help what do I do now? Calm down and write down what I tell you my friend explained. You need a psychological assessment, fight for it and make sure you do not take no for an answer, yep I can do that. Start enquiring about Home Tuition; get looking for an ABA psychologist and programme developer, right yes I can do that etc etc.

I knew of a small ABA school in a place called Strokestown run by Ms Cathy Dalton, a mother of an Autistic girl. Right ok my first point of "lets get this started contact", Ms Cathy Dalton. The lovely Cathy met with me, she explained that I need a diagnostic team to do an assessment but no way would it happen as he was way too young. She gave me a number of a guy in Dublin, I battled for an appointment, I finally got a developmental assessment for my son, and a full psychological developmental assessment would be done. I gathered my money together and sent off a deposit etc, this was it, an answer, a clue to put us on our right path for help and therapies, early intervention, early diagnosis.

We drove down to Dublin, my self and my husband have never been so silent in each others company, our nerves were shot, I had to pull over as I taught I was going to throw up, oh god please let me get there and get this over and done with, how my husband drove was beyond me, we were petrified, I was sick with DH lt as this was my fault, I did this to my son, this was all that was going through my head, my husband begged me to stop blaming myself, insisted I stop blaming my self.

We arrived, the receptionist went to get the psychologist, I hear laughter, I then hear him say "oh her, I just gave her the appointment to get her off the phone" I was in shock, I literally died a little, I taught to my self, how dare he, he has no clue of the journey we’ve taken to need to be here, how dare he make me feel like some over bearing mother who was just irritating and persistent, I looked at my husband, he said leave it, not now, say nothing, I cant DH, you can he said, I did, I said nothing for DH's sake, I knew he couldn’t handle any more of anything.

We went with Luca another girl and the Psycholoshit, he done all sorts of things with him and ticked his boxes and wrote his crap. Assessment over, oh no here it is, we went into a room while Luca played with the girl. Well firstly said the psycholoshit, he’s not autistic, oh thank god, oh the relief, the joy, but hold on, then what is he, cause he is definitely something, I asked could he have a pervasive developmental disorder, absolutely not, could he be on the spectrum at all, if your child is on the spectrum I’ll eat my hat said the psycholoshit. DH then asked, why does my son not look at me, why has he no eye contact, maybe he just does not like you said Mr psycholoshit, I looked in disgust and said ok so what are we facing with Luca, a possible language disorder. Great, delight, we’ll get investigating and looking for help, thank you, see ya now.

We were overjoyed, our baby was in fact not autistic, this was great news, we rang everyone, my husband was over the moon, we were, well words can’t describe, just over joyed. We then still had previously had an assessment booked with the ABA Psychologist so we said, look we’ll keep it, she can help us with our path to getting help for Speech problem.

I was advised by my friend to check out a special needs board on a site called rollercoaster; she said it had great advice and answers to lots of questions I might have, she was also a member. I stumbled across strange names like hennie, hammie, petunia, jazzygirl, tazz, black cat, gracie, and some I cant even remember now. I was so frazzled and all over the place, I was angry, confused, frustrated, frightened, these guys helped me, calmed me down, confirmed my suspicions, I always got hennie and hammie mixed up, I never knew which one I had been speaking too last. I remember hammie saying, if it swims like a duck, looks like a duck, but then when I mentioned my experience in Dublin I was told, no it must not be autism so, I was desperately seeking parents of congenital hypothyroid babies but none existed, I was going insane. What the hell is wrong with my son?

The psychologist came to our house; she came in all bubbly and blew me away with her experience, knowledge, and achievements. This woman was amazing, I was in awe. She said, Maddie when I came in Luca never looked to you for reassurance about me, I’m a complete stranger, she also said his tip toeing was quite severe and his eye contact really bad, he participated with her under protest, he did not want her in his house. She fell in love with him; he’s my kind of guy she said. I asked what is wrong with him, she said well he’s on the spectrum but i cannot diagnose children, I explained about my experience in Dublin, she was in shock as she knew this psych and would have considered him really good and respectful, she told me about the wonderful Prof, I was listening :)

I went to see the AMO, she was quite concerned and fully interested in Lucas story, she was very impressed in all we had done for him so far, she gave me a big hug and told me I was a wonderful mother, that I was so on the ball and ready to fight for my son, she put an urgent appointment through for paediatrician, Physio, OT and SLT, I was blown away as she seemed so powerful and get the job done type.

Luca was 21 mths old,

I constantly had a strong feeling my thyroid caused Lucas problems; I was so sure of it that I researched thyroid issues, and i stumbled across an answer of some sort. http://emedicine.medscape.com/article/919758-overview could this be the answer??? I rang the paediatrician that Luca was referred to, I explained everything, can you bring Luca in tomorrow for blood tests, before 12 no fasting etc. I said fine, I was so happy as I was being listened to.

We went to see the consultant paediatrician when we had Psychoshits report, aba report, doctors letters with us, DH did not come this time, my mother did, DH had taken so much time off work already that anymore was impossible. The paediatrician, a lovely lovely man (balinasloe hospital) came to see us, he chatted away, he never once took his eyes off Luca, he asked all his developmental history, he then put the cream on Lucas hands to numb them to take bloods, he said there was no physical signs of the congenital hypo disorder. He read through the reports I had, he asked more questions, he said, well autism is usually diagnosed after the age of 2 but I think we can safely put the name to it now, I looked up as my heart sank, what ? no I was told he was not autistic, they were sure, well he said, I don’t know who wrote this report (psychoshit) but id advise you to ignore it and never look at it again, I think this guy was very wrong, it is obvious to me what I’m seeing b4 my own eyes, the ABA report is only short of spelling it out to you, Maddie, I’m sorry but yes Luca is Autistic, I’m going to do bloods to check for any congenital problems so I can rule them out as Luca needs his diagnosis to come sooner rather than later.

My poor baby had 20 viles of blood taken, it took 5 to hold him down, my poor baby, but no getting upset, this had to be done, I held him down :(( I remember the doctor asking me twice if I was ok, I diddnt answer, I diddnt know, how was I going to tell DH, that’s all I could think of, I knew the doctor was right, I was not in denial, I was just so worried about DH going through this again. I was just blank, my mum also, the doctor got us tea and chatted for ages, he said you knew all along Maddie that’s amazing, your so in tune with your son. I actually smiled, this guy was so right, but he just met me and I feel like he knew me and was Lucas doctor since forever, I was so comforted and assured in and by his presence. This man was my son’s Doctor, things were going to be ok.

The paediatrician recommended Luca for immediate services with the Brothers of Charity, he advised me that this would be the best route to take , I know why now. Luca received immediate Physio, OT and SLT; his bloods came back clear and free of chromo zone anomalies.

Luca was now receiving all of the services, I was so happy, I remember logging onto rollercoaster and seeing parents still waiting on services, still waiting for assessments, oh my god, how lucky was I, Luca was so well looked after and given everything. The brothers hired my dear friend Siobhan to work with Luca in a tutor like programme, Siobhan and my son had an amazing connection, he loved her and she loved him, she was more to him than an employed person to work with him. Siobhan then took on the role of Home support worker also with Luca, she brought him to her home so we could get a break, so that Luca could participate as part of her family, along side her 2 children, one of which was the same age as Luca, Lucas first little friend.

I was very lucky to have moved to Roscommon, faith brought me here, my mum brought me here, someone up there is seriously looking out for my son, he has a guardian angel as do I.

Posted by coolkid at 4:44 PM

5 comments:

Petunia said...

Oh Mandie, you really have been on an emotional rollercoaster! I can only imagine the relief you felt when you were told it wasn't autism and the earthshattering plummet when you were then told again that it was. So sorry you had to go through that xx

December 13, 2009 9:57 AM

Anonymous said...

hey babe..oh my god mandie your blogs are brilliant.you write them so well and i love readin them.theyve brought me to tears and i just want you to know im in awe of you and i think you are such an AMAZING person and mother and i just wat to send ya big big hug..you are brilliant.your an inspiration..your kids are sooooooooo blessed to have an amazing mam like you..sendin you all my love and keep up the good work missusxxxxxxxxxxxxx

December 14, 2009 1:09 PM

Anonymous said...

Kyra Mania its a lovely story its awsome xxxxxxxxxxxx best story ever

4 minutes ago

December 14, 2009 2:37 PM

Anonymous said...

Kyra Mania the story was so good ryli not autistic my babysxxxxx

22 seconds ago

December 14, 2009 2:50 PM

Anonymous said...

i remember you ringing me with the good news, i was so happy for you all

then you ringing me again not too much after with the actual news, was so gutted for you all and Luca

couldnt believe how one day he wasnt to the next that he was, i remember you in bits on the phone, such a traumatic time, and poor guido hun, i never forget that

A xx

January 6, 2010 3:59 AM

The fabulous Mr Luca part 4 sleepy baby

2010-08-14T08:54:00.001-07:00

.Were home, all my friends and family around me, I’m in tatters, i hate hospitals, Luca born Friday 28th of July and 9.30 am, I am home Sunday the 30th of July at 12.45 pm. Yes yes i know, how the hell did I manage that, well I suffer from depression and as my thyroid and b12 had dipped so badly I was starting to feel low, I was in a place I hate, hospital, I wanted to be home with my baby girl who I was missing so badly, I wanted to be in the same bed as my hubby in my own home, the nurses knew I was getting down so I begged them to let me home, they said if I could walk unaided (just after a section) from my bed to the corridor I could go home, well by Jesus did I do it, agonising pain but I bloody did it, so home I went.

My hyper niece whom I love and adore came running to hug me, aghhhhh no no, don’t run, if she had of fell on me i was a gonner, could have back in the hospital split in two, oh Jesus am I mental, was this really a good idea, ah yea lol. I survived, I walked like a snail and yelped once or twice but I was home, but how odd, Luca was sooooo quiet, he slept and slept, child you need a bloody bottle, wake up, I had to wake him up for his feed, this baby is soooo cool, he sleeps all day and most of the night.

Luca had jaundice as was born 10 days early but could that be why he was so sleepy, yes of coarse it was, wasn’t it. My sister gave him his first bath, she was so nervous as he was soooo tiny. Ah he does make noise, he screamed his head off, he didn’t like the bath. He christened my sister, he pood on her hand when she took him out of the bath, we all fell round laughing, ah more tears he doesn’t like noisy laughing. He was always flinching while in his sleep at noise, like he was hyper sensitive to it, didn’t wake him up thoe.

Now this was my first baby boy, but I’ve changed my fair share of baby boys nappies in my time, is his little balls supposed to be so big, hmmmm maybe its just me. Luca also had a hernia on his bellybutton, but that’s quite common for boys and fades gradually. As the 4th week approaching I asked my mum who was back up for a visit, mum should a babies ball sack be so big, I don’t know she said, well mum you did have 3 boys, yes she said but many moons ago, I don’t think so. Sandra arrives, strange request Sandra but could you look at Luca’s privates and see if you think it’s too big, oh god yes, what’s that about I wonder. I go to the doctor, Luca has a leaking hernia, it happens the doctor said, don’t worry, needs to be monitored and if not cleared after a year, a little op to repair the leak, yep fine I can live with that.

Over the next 2 weeks, were is my stern babies smiles and gurgles, its 6 weeks mister, what’s up, I grow concerned but I don’t panic, its still early days. The 6 week check up with my doctor arrives. Plenty of smiles and noises asks the doctor, well no actually, none, now my doctor knows me very well and knew I had studied developmental milestones etc, Maddie are you sure, yes very sure, give it a few more weeks, he could be just lazy and late to start. I get home and say it to my mum and sister, oh no, actually Maddie, he doesn’t smile yet, your right. I think I new then that I was looking at autism to be honest; you see there is a strong genetic factor of autism in my family.

As time went by and Luca became more and more obviously autistic to me I think I just accepted it and got on with it, I knew this day was coming, I was prepared since I was 3 months pregnant. The months went on, Luca still had no smiles, did not look to be cuddled, did not crave affection and attention, he took it but didn’t want or need it. he failed 2 hearing tests, was not sitting up, crawling, responding to name, was upset at any noise and too many people in the room, he slept like a log and napped frequently throughout the day, you know you would almost forget he was there he was that quiet. He also liked his bath water way too hot for his baby skin, he loved deep pressure baby massage, considering he did not crave interaction I found this unusual but great for me as I could bond with him while doing it.

We decided to move when Luca was 8 months old, we sold very quickly and all went really well with the sale. While packing up our boxes and sealing them with package tape I noticed something so odd, Luca went off his head when he heard package tape being used, he absolutely hated the noise of it, to the extent that we had to ask my neighbour to mind him in her house while we sealed the boxes.

By the time we moved Luca had turned 1, he was such a happy baby in his own company, he lived in his own world and done his own thing, he diddnt cry and moan, he just pottered about doing his thing. He has some words, Ky, light, mamma dada, nana and Ryan. He still did not walk but did go around upright on his knees; he had a walker so he was very happy to be in it.

I got to know several really good people in my new area, I made friends quite quickly. I took Luca to a toddler group, well he hated it, he would force himself into a coma like sleep to shut out everyone and everything but I persisted and made him go. At 18 months Luca had started to walk around the furniture, the only problem is that he was on his tip toes, ouch, that has to hurt I taught to my self, what is going on there. I asked the public health nurse to call in and do a developmental check on him, there it was, plain as day, Autism. My self and my hubby went into to web surfing overdrive, yes Autism

Posted by coolkid at 1:53 PM

6 comments:

Jean said...

wow...mandie you were so in tune with luca from conception. Him and kyra are lucky kids xxx

December 12, 2009 3:47 PM

Jen said...

Your experience really stood to you here. The King was an extremely fussy baby, never slept, hit his milestones on time so we didn't have any questions, until he 'lost' his words. I wonder sometimes if I had a bit more knowledge would I have spotted it earlier, you were really on the ball with the massage etc. Well done you :)

December 12, 2009 3:56 PM

Petunia said...

Well done on catching on so early Mandie. It's amazing how we all know quite early on that something isn't quite right but are able to push it to the back of our minds until we are ready to deal with it. xxx

December 13, 2009 9:39 AM

Anonymous said...

WOW Mandie - Ava has so so so many of the same traits! Great reading that - really is - its not all in my head!!!

December 14, 2009 12:51 PM

Anonymous said...

Great blog, hun xx

December 14, 2009 12:52 PM

Anonymous said...

yea but we were all missing you and the kids up here, miss you terrible hun xx

A xx

January 6, 2010 4:00 AM

The fabulous Mr Luca part 3 (what ever will be will be)

2010-08-14T08:52:00.001-07:00

To hell with the worrying, I was pregnant and proud of it. I refused to spend the rest of my pregnancy crying, wondering what if, blaming myself, blaming others, I was pregnant and I had a strong healthy baby inside of me kicking every organ its foot could reach. Planning, decorating and nesting took over, I was a freak, I turned to bleach like it was my best friend, my house smelled like a swimming pool, yuck! McDonalds, I almost had shares in the place, my god my baby could have placed his own order for a quarter pounder with cheese.

We went for our 3d scan, look at my perfect baby BOY, yes he was a boy, I knew it, DH and Ky a little bit bummed it wasn’t a girl, I thanked the lord it was not a girl as my girl was more than enough for me. He looked exactly like his sister, her double, the nurse woke him up by wiggling my belly, oh he was a boy all right, where did his teeny tiny hand go, straight down to his nuts for a scratch, I swear to god, I have the video evidence to prove it, yes people their nut scratchers from conception.

I was just over joyed, straight to ahem McDonalds then off to Debenhams, I had some serious shopping to do, Jasper Conrhan, Rocha little Rocha, I emptied the store, the child was clothed well past his 2nd birthday, only the best will do for my wee man.

And now the bitter argument for a name began, Ryli, No, Keenan, No, Logan, No, Brandon, No, grrrrr why do men have to have a say in a babies name. My sister to the rescue, yes people my son is named after her man crush on some Dr in ER, Luca she said, well now I like that, he liked it too, Luca it was.

Both my sister and my brother James came to my hospital visit with me, we would do lunch in the Italian Connection on Talbot Street on the way home, they really only came for the lunch. As Luca grew he crucified me, you see Ky’s delivery was no picnic and she left me in tatters. I remember the Dr saying your baby is transverse, WHAT, he’s lying sideways. OK what does that mean, well a section could be ruled in, WHAT no way, well you cant deliver him sideways, WHAT you see I’m terrified of birth, I forgot all about that fact, the doctor was so funny, he kept saying should we schedule a section, no, shall we try turn him, no, well what shall we do, I don’t know, you have to give birth to him my dear, oh god, I forgot all about that part.

Eventually we agreed on a section, after a lot of detail and coaxing from my friend Fiona who had 2 previous. I remember the doctor in the Rotunda saying to me, don’t worry I’ll look after you. I was soooo scared, the flash backs of Ky’s delivery running through my head, they even offered to knock me out completely under the section, I said no way. He scheduled me for July 28th; yes I like the sound of that, that’s a great day (but why?) I told my brother the date, i said what do you think, he laughed at me, WHAT he said, that’s my birthday, OMG I’m sorry , do you mind sharing the day or will I change it, no keep it he said, I like it.

July 28th came, oh did i shit myself, the doc was late, The anaesthesiast put I’m my epidural, I fainted onto the bed, panic, I’m ok, I always do this with local anaesthetic, panic over, doctor was LATE. Eventually doc came, can u feel this, WHAT were good to go. Within minutes it was done, he was here, I looked at him, he didn’t make a sound, they had to make him cry and do something with him, he was a bit sleepy, then there it was, screams, my 5lb 6oz baby boy was here, oh my god, so tiny, so perfect, he stared right up at me, I held him (with help) then they gave him to DH while I went into recovery.

It was the longest hour of my life, I want to get to my baby, the nurse was lovely, he was Spanish, I was so whacked up on morphine I was talking all sorts of shite. Yay time to go see my men, make my phone calls, get ready for the visitors, my baby boy was safe and well and giving it welly, boy could he scream.

Posted by coolkid at 11:18 AM

5 comments:

Dougal said...

Aw Mandie, what a fantastic journey. You have a fantastic way with words hun

Michele

xxxx

December 12, 2009 1:15 PM

Anonymous said...

a real rollercoaster ride mandie! xxx

December 14, 2009 12:53 PM

Anonymous said...

Yep, it sure was. Left you a comment, a bit of a cross one as I have underactive thyroid too and was NEVER told any of that stuff. Why can't they just tell us? Anyway, well done Mrs, will go back and leave a happier comment when I have a cooler head on me :D

December 14, 2009 12:53 PM

Anonymous said...

Kyra Mania lovely its very very good, and awsome, very cool.

i loved it. the fact that i got a baby boy

2 minutes ago

December 14, 2009 2:39 PM

Anonymous said...

oh he was just so tiny, and so dark and quiet

he made me broody for a while and i was cursing you hahaha

A xx

The fabulous Mr Luca part 2 (brain development)

2010-08-14T08:51:00.000-07:00

Saturday, December 12, 2009

My first hospital visit, I so waited for this day to arrive, they done my scan earlier than normal as I had threatened to miscarry. In we went, mum said Ky, why are we here, why are we in this hospital. Why are you and daddy so excited?????

I lay on the bed, I was so anxious and nervous, sick with worry that something would be wrong, especially as Ky was there too, but no i was sure, everything was ok. The nurse showed Ky her baby brother / sister, she froze, WHAT, but my mum is not pregnant, yes she is said the nurse, oh my god, Ky’s face was just priceless; she was the proudest big sister alive. Baby was doing really well, everything "normal" and healthy. Relief, excitement, nerves, joy, all different emotions rushing through me and DH. Straight on the phone to everyone to spread the good news, oh this was the most perfect day.

The check in nurse made a note that I had an underactive thyroid, we need to do your bloods and get you to visit the endocrine clinic next week, Ok great, off home we went, we celebrated in Pizza hut in Omni shopping centre, we ventured into pennies and headed for the baby section, we each picked out a cream outfit for the baby. This was the greatest day ever.

The next day I got a phone call from the hospital; can you come in tomorrow and see the endocrine team? Yes why, your thyroid level is extremely low, this is very dangerous for you and the baby, oh god, yes I’ll be there first thing in the morning. I asked my sister to come in with me, she did. I sat down with the doctor and she said to me, what amount of eltroxin are you taking, well none at the moment WHAT? I died a little, why i asked, who told you to stop taking your eltroxin, nobody but I was threatening a miscarriage so i stopped all my medications, isn’t that what your supposed to do (i knew noting of my condition just that i had to take these tablets for life) You stupid stupid girl she said to me, without eltroxin your babies brain will not develop properly, how stupid are you, i was numb, oh my god, I did not know, no one had ever told me or explained my condition to me, the consultant immediately threw her arms around me and apologised. She said that she would up my dosage to 250 mg and that maybe we can catch it just in time.

My sister was like a demon, how dare she speak to you like that and frighten you like that, but something inside me clicked, this is why i had the threatened miss, i think something is wrong with my baby, she said no it will be fine, no Sandra, something is wrong, I know it is. What had I done, i tried to save my baby but all along i was actually killing my baby, how could I have been so stupid, why didn’t I look up my condition properly years ago, why when your told you have an underactive thyroid aren’t you given a leaflet, information and told of the dangers of your condition especially as a woman of child bearing age. This was not my fault completely; this was also societies fault, the hse's fault as well as mine. I decided there and then, no I will not take sole responsibility for this; I will educate my self further on my condition and see just what my babies chances are.

When researching on the internet i could only find links to adhd, that wasn’t so bad, I explained everything to my husband, we said what ever will be will be and we’l deal with it when it happens. Fine I can handle that. 2 days later and I was with the endocrinologist again, but it was her understudy, ah I’ll corner him, I asked him to explain the effects it could have on my baby, he was vague and looked anxious, I explained that I could handle it, what is the most that could happen, he explained congenital problems, intellectual problems etc, he tried to paint it prettier that it was, I appreciated it as I knew he was sugar coating and I was preparing myself mentally for the worst.

There and then I told my self, right Maddie, this is destiny. I finally found my happiest place, working with children with special needs (Autism and ADHD) it was faith I took that job, faith that I taught Ky’s behaviours where extreme for her age, and that she was very odd for her age, she drove me to special needs education, she put me there, my daughter was preparing me for a big hit. My daughter, my precious daughter drove me insane for years, I was so confused by her, she’ll grow out of it, its the terrible 2's, the fucking 4's, no it isn’t, something is not right with this child, its not very wrong but not very right either, I thank the lord that Ky was who she was, that I was pushed in the direction of special needs education, that I had the opportunity to work in this area and grow to love and cherish it, as deep down I knew in my heart of hearts I was going to give birth to my very own special needs child.

Posted by coolkid at 11:11 AM

6 comments:

Jen said...

I have underactive thyroid too, and nobody ever told me the effect it could have on an unborn child if my levels weren't right, this is the first I am hearing of it. All I knew was that an unborn child could produce meet its own needs this way at 28 weeks of pregnancy. I too attended the endocrine clinic (begrudgingly, to be honest, I was sick of appointments) but nobody ever explained the importance. I am so cross right now, for both of us!! Jen

December 12, 2009 12:40 PM

Anonymous said...

well done Mandie, im really enjoying your blog! Well done you!

December 14, 2009 12:55 PM

Anonymous said...

really really great start, im hooked. feeling left out wit everyone blogging

December 14, 2009 12:55 PM

Anonymous said...

well done Mandie - brilliant blogs - good for you xxx

Sat at 8:05pm

December 14, 2009 12:56 PM

Anonymous said...

Kyra Mania awwhh luca was cute in that picthure i loved that day xxxx good story

35 seconds ago

December 14, 2009 2:41 PM

Anonymous said...

oh god i remember saying, dont be silly to that, hel be fine, stupid doctor

im just after noticing Kyras comments

shes such a great kid

A xx

January 6, 2010 4:02 AM

The making of

2010-08-14T08:50:00.000-07:00

The fabulous mr Luca (the making of)

This isn’t so much a blog but its a little insight to the fabulous Mr Luca .9 years ago, Ky arrived into the world, all 7lb 6 and half ounces of her, I love her unconditionally and with all i have in me and i thank her dearly for helping me change my mind about having more kids. After Ky was born, she was really hard work, then she turned 2, nightmare, then she turned 4, she became easier but complicated and odd. Ky always expressed her wishes for a brother or sister, my answer, not a hope in hell, as Ky had me worn out through and through.

Persistence is one of Ky's strongest points, thank god for that, the more she asked the more i started to think and realise that maybe i had one more in me. You see pregnancy does not come easy to me, it takes planning and fertility help. I asked my doctor for chlomid and my self and my husband decided to give it a go, what the hell, we survived Ky, we’ll survive anything. Ky took a long time to come into our lives, at one point we taught she might never arrive :((, 4 years later a positive pregnancy test and 2 over the moon soon to be parents.

Considering Ky took that long i taught to my self, it will take that long again, maybe a year earlier if we are lucky. I was working in a wonderful job, I loved every day of work, I loved the children I worked with. After years of working with typical children I ventured into the wonderful world of special needs children. This was it; my job for life, my ambition was to become a fully qualified ABA tutor, study psychology, child Psychology and counselling for parents of special needs children, yes i found my way into my future career with a pit stop for a new baby in a few years time.

3 months after taking the chlomid i started feeling unwell, i was dizzy, tired, sore, felt strange. I bet i have a kidney infection; I better stop taking all medications and ask the doc for a prescription. I stopped taking all my meds (eltroxin for an under active thyroid and my chlomid) of coarse I was far too busy to go see doctor so I drank cranberry juice, yes that worked but what was that twinge in my side, that annoying stabbing pain?? Ok I think I need the doctor. My mum was up visiting me, she said, Maddie have you done a pregnancy test, well I laughed, no sure I stopped taking the chlomid. As I was driving past the chemist my mum demanded I pull in and buy a test. Curiosity and slagging between me and my mum got the better of me, so I went home and done the test, WHAT its said I’m pregnant, how is that possible, I stopped taking meds, we stopped trying and had decided to put it on hold for a year as I was loving my job and things were really good right now, how is this possible??

I was really excited but I couldn’t get my head round it, in work the next day again that funny pain in my side, what the hell was that pain, I went to my doctor, explained I was pregnant, checked my urine, no infection, but then what was that stupid pain that was starting to get worse, oh dear, yes it was that pain, a miscarriage type pain, off home to bed for me. It hit home, that’s why i couldn’t get my head round it, I think I knew something was wrong, I think I knew things were not right, I didn’t feel pregnant, I didn’t feel anything but pain. As I lay in bed day after day, I kept saying, baby I don’t care what’s the reason you want outta there is but I promise if you stay put I’ll love you no matter what way you come outta there, hang in there baby, see this happened once b4 and it was not happening to me again. Ky came up and lay beside me on the bed, mum why are you so sick that you can’t get out of bed, anyway mum she said, I really want a baby brother or sister, with those words my heart sank, oh my god, so did I, so badly.

Right that was it, baby you’re staying put, you are not allowed go anywhere, your mine for the keeping. After a few weeks of lying in bed (really hard for a hyper in control woman to do I tell ya) I started feeling a bit sick, wow this is morning sickness, I craved a McDonalds, I felt a lot better, the pain had shifted. I rang my doctor, great news but keep your ass in bed, ok ok, I stayed in bed, it killed me but it was for my baby. I decided there and then that this child was a boy, I don’t know why but it was a boy. The glorious 12th week approached, yes we made it, I’m pregnant and doing fine.

Posted by coolkid at 10:16 AM

9 comments:

Taz said...

Well done Mand!! Keep it up! Will be following you!!

December 12, 2009 11:20 AM

Anonymous said...

ah i want more

Sat at 4:03pm

December 14, 2009 12:57 PM

Anonymous said...

fab! waiting for more........

Sat at 4:27pm •

December 14, 2009 12:57 PM

Anonymous said...

really loved reading this mandie xxx

Sat at 7:46pm

December 14, 2009 12:58 PM

Anonymous said...

Love it xxx

Sat at 7:46pm

December 14, 2009 12:58 PM

Anonymous said...

i loved it mam my fav was when i was born xxxxxxxxxxx

Yesterday at 12:00pm

December 14, 2009 12:59 PM

Anonymous said...

awhh thats lovely xxx

Yesterday at 5:58pm

December 14, 2009 12:59 PM

Anonymous said...

Kyra Maniaawwhh its very good my poor babba xxxxxxxx

about a minute ago

December 14, 2009 2:40 PM

Anonymous said...

oh diddnt she have you pestered for years haha

i remember those few months, sitting on your bed with a cuppa, oh you were stinking hahahaha

A xx

January 6, 2010 4:04 AM

thats all folks

2010-08-14T08:09:00.000-07:00

Hi there

Thank you all so much for reading my blog the fabulous mr luca but due to recent events, I have had to remove the blog. (Most of you know why) it is just for a short period thou

Hmmmm freedom of speech, I think not

It’s a sad sad day when you cannot even tell the world and its dog the story of your children journey through having ASD, the struggles, battles and fights for services. Exposing the bastards that stop you from receiving and accessing your child’s rights and services.

This blog is saved in a safe place and will be put back on line in the near future, when I win my battle that is and I will expose all those who stood in our way

Watch this space, there is so much more to come from this story

BELIEVE ME

But for now its continuation story has a new location with all new identities, the next chapter, please face book me, email me or txt me and I will send you the new link to the next step

i never said id stop telling and blogging hehehehe