All I can think about...

It's crazy how things can change in a matter of weeks. I am no longer a working mother trying to juggle a job and a house and aiming for some sort of balance to go alongside sleepless nights and frantically driving the kids from one house to another!
After a huge amount of consideration and tears (on my part) the other half and myself decided it was about time I finish up work to become a Domestic engineer aka domicile administrator aka desperate housewife, however you would like to put it!!
We had applied for domiciliary care allowance and carers benefit and we were due an answer on this the week we were on holidays. So we decided I finish work the same week as Diddles started in his new school.
That very night before he started we received the refusal letters for Dom care and carers benefit. I had heard from other people who had applied that there was a 75% decline rate on first applications. I had an idea that this would happen however I had a tiny thought in the back of my mind that we could get it first time around! Never will I be so naive again!
This in turn means no carers benefit and I had already finished work so it was a bit like taking a bullet! The reason for refusing him was that the medical assessor did not see how he needed extra care above and beyond that of a typical child of the same age. That was the single most frustrating thing I have ever been told! I genuinely think the medical assessors do not read the applications. They go from a pile of new first applications and straight into a pile of refused applications.

Anywho got an appeal together within 2 days after receiving the letters and I sent a total of 30 pages+

of documents back to them to prove he needs care and attention constantly. I got a letter from our GP, the principal of his ASD specific preschool, a letter from the public health nurse , all our correspondence with the hospitals and early intervention team. I also wrote a day to day account of what extra care he requires from our perspective.

All in all it's just as well I gave up work as none of this running around would have been possible if I was still doing 8 hours a day in an office!

All this work for € 300 a month

!! What a joke !

Anyway Diddles absolutely lit up when I first put his uniform on him! He absolutely loves going into school! There are 5 other children in his class and two SNAs and his teacher. He gets the attention he needs which is all we have wanted for him. He still however is not receiving any services or therapies he is on waiting lists for all. I'll keep fighting until we get it for him!
I am starting a course in a few weeks to learn about speech therapy I got free tuition as the girl running the course needs the numbers and it'll be me helping her out ! What a nice break! I'll probably qualify quicker as a speech therapist than when Diddles is at the top of the waiting list! So hopefully things are on the up for us. Can not wait for the waiting lists and welfare to not be All I can think about!

AAH FINALLY!! some PROGRESS AROUND HERE!!

Well Since my last post in March a lot has happened, Diddles finally got his assessment of need done and dusted.
It was very bitter sweet because although you never want to hear your child has a disability your finally getting on the right road for the help that he needs!!  While the assessment sessions were happening you kind of go into robot mode! Its like your answering questions in the exam of your life, similar to the type of nervousness you experience with the leaving cert except you know all the answers. Its just how you answer them and how the examiner is interpreting your explanation. Every single detail of your childs life is laid bare for a complete stranger to decide which type of care he needs for his future. Very strange..... you wonder how this person is qualified and have they ever known the life that your son leads, but sure how could they?? unless they themselves were disabled in the way he is or have cared for someone on a full time basis day in day out. Not judging someone for an hour at a time once a week for several weeks. The whole process is quite aggravating really.
In order to get your head around this ridiculousness you need to numb yourself to all these little details and look at the bigger picture.
So he met with the psychologist, the speech and language therapist and the occupational therapist. They called out to his play-school and gathered their information needed to come to a joint conclusion. The conclusion and outcome that I myself had expected to hear since Diddles turned three. We conclude that your son has Autism. Now you see this in writing and most mothers would be devastated or emotional wrecks to acknowledge such a thing. However I had dealt with this a long time ago and my Husband had dealt with this so when we received this news we were Relieved, to the point were I could have slapped the assessors and said DUH!! Now point me in the direction of a school and some answers, and for the love of god do not utter the words "waiting list" to me!
The next big hurdle is getting entitlements for him, I am currently in the process of applying for a career break so I can take Luke to and from his new ASD pre-school in Kildare. I was told to apply for carers allowance I would have to wait for 16 weeks to process the application, before I do that I have to be approved for Domiciliary Care Allowance or I point blank do not qualify. It almost feels like I'm on trial to be able to give up work to look after my own Son, who at this point in his life really, desperately needs early intervention and I'm between a rock and a hard place due to a queue in the disability departments at the welfare office. Surely this department should be priority when it comes to children and adults with life long and severe disabilities whether it is a mental or physical disability!  Why not all the unemployed people do something for their dole money and go into these government offices to help with the back log of applications and help dig this country out of  the giant hole it has dug for itself. Instead of all these petty TD's and Ministers pointing the finger and passing the blame like a hot potato.Stop the complaining and get off your backsides and do something. Ill do it, for nothing! I personally volunteer to go into the offices and help clear the back log of applications, if it means children like Diddles are given the opportunity that other children should have!!
Basic human rights clothing, food and an education but only if they are willing to wait while our government cut back slightly on all things necessary!  Sure special needs assisstants in schools are not essential, all teachers should be able to take on an extra 12 students on top of their usual 20 and manage to help the special needs kids with toileting and opening their lunch boxes while the rest of the kids swing out of the black board to receive some sort of attention. While the SNA's are sent to the welfare office until the economy picks up. I tell you no wonder depression rates are rising and crime is escalating this is all linked, a viscous cycle until the universe implodes.

Aside from the S.T.R.E.S.S of all that Myself and seven of my ladies completed the womens mini marathon this June. Great experience got absolutely drenched but it was worth it. Just to cross the finish line and raise some money for a very worthy cause Irish Autism Action. Good sense of acheivement about the whole thing. Will definitely do it again next year, might even jog it next time!Ha we'll see ('',)

Also Diddles graduation from his play-school last week check him out so cute!!
First graduation of many!!!!!!

Also Madman turned One!! That year absolutely flew in, He is now babbling away and walking everywhere, a real little munchkin man, the boys get on brilliantly, Diddles is very protective of Madman, he is amazed by his walking and talking, they are bringing each other on more than I ever thought possible!!

Frustrating times!

Windows Live Hotmail: "Assessement of need‏
From: Zarah Doyle (zarahdoyle@live.ie)
Sent:09 March 2010 21:21:01
To: info@maryharney.ie; emmet.stagg@oireachtas.ie; minister's_office@health.irlgov.ie

To whom it may concern

Please can you help me, My son has been to see the pediatrician & Early intervention team at **** hospital they have told me he is on the autism spectrum. In order to be seen by **** hospital we had to wait since a referral by our GP in May 2009 until February 8th of this year. The only way they can diagnose him officially is by a clynical psychologists report. I have now been advised we have to wait for a further six months. He turned four 11th January. He should have been starting school in September and now I'm afraid my hands are tied for school applications as I do not possess a clynical psychologists' report. I have been to see the local mainstream schools principal and he believes that because my son is not a threat to his peers, he will not be permitted a special needs assisstant for the classroom, due to cut backs. My son does not have the fine motor skills to open his lunch box without assisstance!

I applied for the assessment of need last august through *********** hospital, in November 2009 we moved to Co.Kildare and we were told by our Public Health Nurse we would have to reapply to Kildare to go at the bottom of their waiting list. Legally we were told we should have been seen within 3 months.
However we were four months on waiting list in Dublin and now on list in Kildare to be told it will be another 6 months plus before we get anywhere!

Everyone I have spoken to has told me early intervention is key and yet time is flying by us while on a waiting list!!


I am positive we are not the only family in this situation but this is such a ridiculous set back. He requires constant attention and we can not apply for any entitlements without a diagnosis. My Husband and I both work full time, we have a nine month old baby and we need some sort of assisstance on this.

The cost of a private assessment in this country in unaffordable to say the least. Speech therapy is at a crippling cost.

It is my sons right as a person with autism to an accessible, unbiased and accurate clinical diagnosis and assessment.
Could someone please help me on this! all I am asking is for what he is entitled to, Education and health services!!





Regards
Z Doyle

From the minute we met.....

My understanding of the word Autism is having to interpret the world around us in a different way.
Taking away basic ability to speak, understand, and feel certain things. I imagine the frustration to not be able to just communicate with your own mother. The simplest of things is the hardest task. Instead of asking as the average child would for a drink or a biscuit you have to point and pull people toward what you want in order for them to understand you. The birds singing are more distracting than someone calling your name.






I am 23 and at this tender age, many of my elders render me still a child. However my very existence on this earth would contradict them. I became a mother to my beautiful baby boy on the eleventh of January 2006. He was eleven days over due but worth the wait. Needless to say but at the age of nineteen my life was completely changed. My Fiancee and I were solely responsible for this tiny bundle we brought home from the Coombe on that freezing January day. Despite the exhaustion of bringing him in to this world I remember every second like it was yesterday.

I remember waiting so impatiently for the paediatrician to come to my bed on the ward to check (Diddles) was ok to bring home. He was eight lbs on the button and healthy as a little horse. The night before fifteen members of my family were standing around my bed at visiting time, I have no idea how they got past the security, it was only supposed to be maximum two visitors at a time. That’s my family for you , they come in their masses rain, hail or snow.

I will never forget bringing him down to the car in his carry tot. He looked so lost in the all in one fleece lined coat. My Fiancee (at the time Husband now) drove at a sensitive speed of around 20 km p/h all the way home. Ignoring the angry traffic behind him and his only interest was to get us both home safely.






I think of my poor mother scrubbing the house from top to bottom for the new arrival. I walked in the door and the house was gleaming. She stood there with tears in her eyes and wore a huge smile as she stood in the sitting room. Nanna was probably not a name she was expecting to be called so soon but as soon as she seen him she was the proudest Nanna around. She wrapped him in a blanket and sat by the fire and sent me to bed to get my rest. I must have looked exhausted because the first word she said to me was BED!






As for the other half well he drove into the Jervis centre and got Diddles his first football kit printed with his name and everything. Proud as punch to have a son of his own.

Diddles sailed through all of the milestones, first the goo-ing and gaa-ing , then sitting up and crawling and then walking by ten months. Everyone always comments on his gorgeous huge blue eyes and blonde curls. Although he hadn’t a single visible hair till he was almost two years old. His first words were “Mama” and “Dadda” then the rest began to follow nanna, grandad, soo soo, boppy all the usual baby babble. When he turned two something seemed to change and I still have trouble trying to figure out and pinpoint when or what happened but the speech seemed to slow and he seemed to not understand words he used to understand.






People started to notice that when they called his name he was barely aware and just went on playing or looking out the window at the airplane in the sky or the dog across the road.
At the time I never thought that much of it, I thought maybe he was just shy or was not interested in conversing with people he had not seen in a month. There was always something that made me doubt anything was wrong, he is the happiest child. Loving, affectionate, never makes strange.
It was one of my aunt’s that pointed out that a child she was minding the same age as Diddles had been speaking in small sentences and understood simple words that Diddles could not seem to grasp.
He was always engrossed in playing with his trains and cars and lining them up on a table or window sill, he would close one eye and squint the other while rolling the lined up toys past his eye.

This did not seem particularly strange at first but then he started to do this with everything.
He would line up pegs, DVD boxes , lego, you name it he would line it up.
When Diddles was two and a half Myself and his Dad got married. We were together five years at that stage. We were young and we did get a few funny looks when we told people we were getting married but we did not care. We both knew exactly what we wanted. Family life is really important to both of us
It was around this time that Diddles' sleeping patterns were almost impossible to cope with. He did not sleep at all during the day and yet he could lye awake laughing hysterically for sometimes hours, He was just never tired. This was the point that I realised something was seriously not right. One night it was about 3 in the morning and I could hear him stand up in the cot and laughing. My blood ran cold it was pitch black, no lights on in the room and when I turned on the light he did not even seem to notice, he continued to point to the corner of our bedroom and laugh. It was more the fact that it seemed like he was looking past the wall in our bedroom that frightened me.
 Then all of a sudden he developed the habit of running up and down the hall back and forth repeatedly for long periods of time. I would have loved to know what was so funny! At this point I was getting on edge about the whole thing, but every time I mentioned these little habits he had I was told he was just burning off energy or he'd probably had too much sugar or some other excuse.

Diddles went for his check up when he turned three, we had an idea something was not right but like any parent you want to think your child is perfectly healthy. It was always a phase he was going through. Like trying to potty train him. I tried when he was two and a half, he was having none of it. I tried again when he turned three still not a hope that he had even the slightest bit of interest. When I asked other parents how they trained they children they always responded with boys are so much more difficult to train than girls.

The nurse had asked him what his name was and he wouldnt respond, she asked him to point to the cat in her book and he was not at all interested. He just went around the room on his own agenda babbling away to himself in his own little language.
This was when I looked into speech therapy, i still had no idea at this point it was anything other than speech delay!!

I spent a few days looking up information about speech delay and local speech therapists, I emailed a few and one got back to me living close to my mam. She came out for an interview type session with myself and Diddles the week after his 3rd birthday. At that time baby number two was on the way.

The therapist observed Diddles in the living room, How he played and sung his songs to himself. He didnt have much eye contact with me at this stage so needless to say he barely seemed like he noticed we were in the room with him.

I informed her of his little habits, interests and daily routines. She didnt really give me much feedback other than to say he needed speech therapy and she would begin with the Hanen Method. Which to sum up meant to get down to eye level when speaking to him, Label everything, to use simple short sentances to help him understand. These were things I had been doing myself with him already and I had not seen much result from it but she told me to persist.

I knew he loved music and singing so I made him some CD's of nursery rhymes for our car journeys as I knew it was the only place he would not be able to run away or get distracted. This worked brilliantly he remembered every word to some of the songs after only hearing them twice. He recited his ABC's not perfectly spoken but I could understand him. He recited numbers one to fifteen. He knew his animal noises. I was so excited that this had worked and was wondering what the next step was...





The next visit with the speech therapist I told her the progress he'd made since her last session. She then advised me that this symptom was called Echolalia (repeating words or phrases in place of normal language). My heart sunk, while it was great he could repeat the words and songs it did not by any means solve the problem. He had to understand the meaning of what he was saying. She did activities like blowing bubbles and playing with blocks and shapes and colour matching. Slowly but surely he began to sit for longer periods of time but still no longer than 5 minutes or so.
By the time I reached about 8 months pregnant I was finding it so difficult to manage him, alongside the breathlessness and hormonal outburst pregnant women do experience, I found myself constantly angry and stressed out and absolutely exhausted. Working 9-5 on a 5 day week driving to work and spending hours sitting in the car in traffic and then getting home doing speech therapy, playtime, bedtime and potty training I genuinely dont know how my head didnt explode. Not to mention his staying awake for hours giggling inappropriately. I left work for maternity leave three weeks early. I was exhausted!!  And a new baby almost ready to arrive. At that point my social life had shrunk to zero dont think I actually spoke to anyone outside the people that happen to cross my daily routine.

One particular session the week before I was due the speech therapist mentioned the word Autism to me. I had no idea what to expect from this. She told me of another child she was doing speech therapy for that was autistic.
She explained some of the symptoms which to me sounded an awful lot like habits many  regular kids would have. She warned me "what ever you do don't look it up on the internet!" Well that was like walking a tight-rope and not looking down! 
As soon as she left I googled and googled and googled some more!!I educated myself in all things Autism. It was very scary but I was so thirsty for information, something was not right with my baby boy and I wanted to fix it.
I knew pretty much straight away what was in store for our family. The penny had dropped, now I had to deal with it. I tried speaking to my other half about it but he was having none of it. He wanted a professionals opinion and that was that. It didn't matter what I said or thought or how much evidence was there nobody wanted to believe it. I was devastated and nobody believed me. I have never felt so alone in my life as I did at that moment. It was like everyone thought I was jumping to conclusions, Like I walked into a room of my closest family and friends and started choking and people were just telling me to shush. I had argument after argument at night with my husband. I could understand his point, I wasn't a professional and had no experience with Autism or anything like it for that matter, but a mother knows!! and if he had of admitted it back then HE knew just as well as I did.
Baby no.2 arrived on the 21st May 2009 @ 8.06am. 7lb 8oz and gorgeous.

All the stress was forgotten about from the previous 3 months. I was in love all over again. Madman saved me from a scary place I was heading. My little superhero. Diddles immediately was amazed by Madman. He started following simple instructions like "get the bottle" and "put this in the bin please." His language doubled and his understanding improved immensely! At that point I had spent at least two full straight hours a day doing flash cards and imaginary play, that was if Madmans feeding and sleeping times were working in our favour. I got into the frame of mind as to stop thinking about it and just do it. I didnt give myself time to think about it. I was bridesmaid for my Mam in the August so we all were kept busy running around with preparations for the Wedding. I was not due back to work until November so every minute was planned.





When september came we decided to send Diddles to a playschool to see how he would cope with the teachers directions and to put him in a social situation with kids his own age.
He loved the fact that his routine had become fun, he got to paint and play for a few hours four days a week. Again the teacher mentioned the word Autism and I went back into research mode. When Diddles was in playschool I would get home go on the laptop and search and search until I found what I was looking for. I didnt neccesarily know what I was looking for but I knew I would find something. I found the Generation Rescue website again, It led me to other sites closer to home like Autism Ireland and Autism Awareness.





The good that came out of researching on the generation rescue website was that I was clued up on the Gluten free casein free diet. I was ready to start it but my husband was not convinced and I didn't want to push him in to it. The speech therapist suggested we see a clynical psychologist she worked with. We brought Diddles down to him for a consultation and he interviewed us about Diddles. He observed Diddles playing with my mam in a playroom with a two way mirror. We filled out a detailed questionaire on him and at the end of the consultation (not a diagnosis) he said he was going to assess everything we had given him that day and get back to us. He said he already knew from that hour what the feedback would be. When I questioned him he said yes your son is on the Autism spectrum. He might as well have got a knife and stabbed me in the heart. Hearing this from someone other than myself was shocking, even though I knew the outcome I was devastated. However I was delighted that day my Husband heard it from the doctors mouth. I was not insane!!!! 
After we left the doctors office we (me, other half , mam & diddles) got into the car. I was trying to swallow the huge lump in my throat while explaining to my Mam what the Doctor had said. Her initial reaction was to say it will be alright and not to worry we'll all work on him. However that didnt stop the two of us, we were in floods of tears! I didn't want to see or speak to anyone. I just want to lock the hall door with just the four of us, our little family and live life as we knew it. It was only other peoples reactions that got me feeling upset and anxious. Unfortunately to get any entitlements in this country the kids have to have a label. The problem now was getting the label. The cost of a diagnosis privately was insane and we just did not have that kind of money, we just bought a house, I was still on maternity leave, new baby and we were still paying for speech thereapy @ €90 per hour. Our only options was to get on the waiting list to see consultant in Childrens Hospital. Our GP sent off letters of reccomendation to see the paediatrics team for assessments. These were actually letters to chase the appointments as we had been on waiting list since he turned three!!
About six weeks later we received letter from one of the hospitals saying they could see us in June 2010. I was so angry and frustrated!! Thats just about a year and a half on a waiting list to just be seen not even for a diagnosis. I asked my GP was there anything we could do to speed this us and he said this was due to cutbacks the hospitals were not replacing staff if they went on maternity leave etc etc. He said to hold out for the other hospital and see what time frame they gave us. Everntually we got a letter from them saying they could see us in February 2010. This was still frustrating but at least it was closer.
In the mean time we decided to try a few things like the GFCF diet. This was a big challenge still is today. There is not an awful lot of food left if you take away wheat and dairy!! Poor Diddles thought he was being punished god love him! He could have fruit veg and meat and dairy was replaced with rice milk and soya. No more dairy milk buttons or crisps or ready brek  or pizza. We soon realised that if you look hard enough you'll find replacement products for almost everything. I have yet to find decent cheese, but other than that 3 months down the line and he is very happy on the diet. His speech has doubled, I'd even say trebled since we made the change. His eye contact is a hundred times better, His play methods have changed, his attention span is longer. We also put him on threelac vitamin supplements, with the combination of these the diet, playschool, Madman and his nanna doing trojan work with him and speech therapy. Its almost like someone flicked the light switch in his head and he's back to us, we did feel a little bit like we had lost him for a while. He can now say "Apple please" or "chocolate stars" or "love you very this much" "Bedtime night night." I cried the first time he said "lub you" he wasnt very clear but I understood him.These are the simple things at the age of 4 you would expect to come so easily and yet they seemed like his first words to me all over again only extra special.
He is still showing alot of signs of Autism and I know that will not likely leave him easily.
My point is he is such a placid child. Very happy in his own company. We are working on his social skills this is the next battle for us. If he could master this we would be very happy!
We brought him for an interview with the principal of the mainstream school where we live. He walked into the office and sat down. When the principal asked him his name, he couldn't answer, he picked up his keys off his desk and asked "what are these ?" and still did not even acknoweledge him. I asked Diddles to take off his coat and he chanted after me "take off your coat, take off your coat" and he took off his coat. He didn't respond to the principal talking to him. He does that when he dosen't know someone. Then he will warm to them after five minutes or so and he'll begin to make eye contact, he might even go and sit beside them. He spent most of the time in the office babbling and singing to himself. He found 3 poster cylinders behind a book case, each one was about a third of his height. He balanced each one perfectly on top of the another. The principal pointed out his dexterity was excellent. His conclusion on the meeting however was that he didnt think Diddles would benefit from a classroom of thirty other children and one teacher and we should wait until next year to send him to the Austistic unit being built in the new school. This made perfect sense to us. We left the office happy enough with the outcome.
Then a thought crept into my head while walking through the school yard. It was lunch time so there were loads of kids out playing, laughing and chasing each other. The thought that Diddles might not have a normal school life, will he always be in a special needs unit. I know how bright he is but not many others do. I know I'm biased but he is capable of so much. I mean Einstein and Mozart were on the autism spectrum they didn't speak until they were 4 and look at their lives. I'm not saying Diddles is Einstein or anything I just mean its possible that life is not defined by autism!