The fabulous Mr Luca part 5 (the road to diagnosis)
Posted Aug 14 2010 8:55am
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
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
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
Kyra Mania its a lovely story its awsome xxxxxxxxxxxx best story ever
4 minutes ago
December 14, 2009 2:37 PM
Kyra Mania the story was so good ryli not autistic my babysxxxxx
22 seconds ago
December 14, 2009 2:50 PM
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