Friday, May 8, 2015

back to where it all began, brace yourself, its a long one

Feeling better and moving onward by recalling backward

This blog/book is slightly all over the place but so is my brain so bare with me or just leave me. I got thinking back to Ls autism journey, cant help but think how different it is to the twins, his journey was where it all began, almost 9 years ago now, his journey began in the womb and here is a blog I wrote about it at the time.

(brain development)

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 K, 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 Crazy Jane was there too, but no i was sure, everything was ok. The nurse showed Crazy Jane her baby brother / sister, she froze, WHAT, but my mum is not pregnant, yes she is said the nurse, oh my god, Crazy Jane’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 under active 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 said the dr? I died a little, why i asked? , she said 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 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 I said, 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 under active 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 medical boards 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 baby’s 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’ll 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 queen crazy, this is it, can’t change anything. It made sense, working with children with special needs (Autism and ADHD) it was faith I took that job in that ABA unit, It was going to come in very handy soon. I knew I was going to have a special needs child there and than, it was time to get my head in a new place and prepare for a very different future and nothing like I originally planned.

(what ever will be will be)

To hell with the worrying, I was pregnant and loving 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 Crazy Jane 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, L she said, well now I like that, he liked it too, L it was.

Both my sister and my brother 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 Mr Fab grew he crucified me, you see Crazy Jane’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. 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 Crazy Jane’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, 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 4 lb 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 G 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.

sleepy baby
Were home, all my friends and family around me, I’m in tatters, i hate hospitals, L 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, would have put me 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, L 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.

L 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 as nervous as he was soooo tiny. Ah he does make noise, he screamed his head off, and 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 thou.

Now this was my first baby boy, but I’ve changed my fair share of baby boy’s nappies in my time, is his little balls supposed to be so big, hmmmm maybe it’s just me. L 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. My sister arrives, strange request sister dear but could you look at L’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, L 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 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, M 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 M, 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 L 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, L 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 L 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, L 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 L 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 didn’t cry and moan, he just pottered about doing his thing. He has some words, K, 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 L 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 L 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

(L’s road to diagnosis)

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 guilt. This was my fault, I did this to my son, this was all that was going through my head, and my husband begged me to stop blaming myself. As a mum you always blame yourself I think, my genetics, my body carried this child, autism is all over my side of the family, Corse it’s my fault.

We arrived; the receptionist went to get the psychologist. We went with L and another girl and the Psycholoshit, he done all sorts of things with him and ticked his boxes and wrote notes. Assessment over, oh no here it is, we went into a room while L 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 the psycholoshit, I looked in disgust and said ok so what are we facing with l, a possible language disorder. Great, delight, we’ll get investigating and looking for help

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, and confirmed my suspicions.

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, M when I came in L 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, she told me about the wonderful Prof, he id in Dublin, he’s great at identifying and dxing children.

I went to see the AMO, she was quite concerned and fully interested in Ls 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.

L was now 21 mths old,

I constantly had a strong feeling my thyroid caused Mr L’s problems; I was so sure of it that I researched thyroid issues, and i stumbled across an answer of some sort. could this be the answer??? I rang the paediatrician that L was referred to, I explained everything, can you bring L in tomorrow for blood tests, before 12 no fasting etc. I said fine, I was just so happy as I was being listened to.

We went to see the consultant paediatrician and we had Psychoshits report, aba report, doctors letters with us, G did not come this time, my mother did as G 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 L, he asked all his developmental history, he then put the cream on L’s hands to numb them to take bloods, he said there were 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, M, I’m sorry but yes L is Autistic, I’m going to do bloods to check for any congenital problems so I can rule them out as L needs his diagnosis to come sooner rather than later.

My poor baby had 20 vials 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 didn’t answer, I didn’t know, how was I going to tell G, that’s all I could think of, I knew the doctor was right, I was not in denial, I was just so worried about G 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 M 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 L 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 L for immediate services with the B of C, he advised me that this would be the best route to take, I know why now. L received immediate Physio, OT and SLT; his bloods came back clear and free of chromo zone anomalies.

L 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, L was so well looked after and given everything. The B of C helped me find an in home worker to work with L in a tutor like programme, She 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. She then took on the role of Home support worker also with L, she brought him to her home so we could get a break, so that L could participate as part of her family, along side her 2 children, one of which was the same age as L, L’s first little friend.

I was very lucky to have moved, 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.

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