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
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
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
mandie im loving it xxx
December 14, 2009 12:48 PM
jaysus woman, you are a powerhouse
December 14, 2009 12:48 PM
Dr Curran is GREAT! keep em coming mandie!
December 14, 2009 12:49 PM
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
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
hi mandie, im loving your blog, Keep up the writing, im waiting for the next installment..