Life as I know it

 JACK,  I cannot believe you are turning 7 on saturday. 7 years ago you entered this world and filled my heart with so much love. I was obsessed with you the minute I saw you. I could not believe we had a boy! we were convinced you were going to be another girl. Your favourite way to go to sleep was to snuggle into my shoulder and you would settle there for hours. You were a mommas boy from the get go and I loved it. Knowing you were my last baby I spoiled you rotten!. I cuddled you to bits and as for your sisters my goodness just call them your other mothers. They adored you. Ava took on a mother role like I have never seen.  She fed you, changed you the lot! Still to this day she will do anything for you. She is your number one protector and cheerleader. I am writing this letter to you so that one day you will read back over it and see how loved you were, how treasured you were and how far  you have come. Autism is our normal. You or your sisters know no diff...

On Saturday it will be 15years since our dad went to work and never came home again. the 19th of May is the exact date our whole world came crashing down around us. Its a date I dread. 15 years is such a long time and yet in so many ways that day feels like yesterday. When you loose someone so close to you it changes you as a person. You never stay the same. Grief changes everything about you, your life, the people around you. You build a new world. It takes years to build that new world. Ask my husband and he will tell you it is only now that I can finally start to speak about my memories with my dad. If I do speak it will only be a for a short while  and I  might  shut off again it is so painful.  His death has had such a profound affect on me. More of an affect than I knew. I was so busy in the early years of his death that I didn't allow myself to grieve properly. It was far to painful and to sad. I cried and hurt so much that I ran from it. When I started to hav...

Since it is offically Autism Awareness Week I decided to do things a bit different this week.  I actually asked Mia to write her thoughts on autism as I feel no one knows it better than her.  She asked me to put together some questions and she would answer them. Mia is 14 this year and I've always wanted to know her thoughts on how she sees things. I also asked Ava would she give her views on it as a sibling her opinions are so important. She has helped me so much over the years  with Mia and Jack. Autism is her normal to grow up with she knows no different but I was interested to hear her  views on how she sees things. MIA What does having Aspergers mean to you Mia? 'To me it mainly means having a lot of different feelings. ' Do you feel your different to other kids your age? 'Yes, very I have always felt different' Whats a really good thing about having Aspergers? 'Its cool to have lots of different feelings' Do you feel like you get go...

There is so many things I thought I had got used to as a 'special needs mum'. The feeling of being slightly that bit different to the other mums you know or see at the school gate because your child is different to theirs no matter how much you try to make them included or feel the same as the other kids. A lot of the old feelings I orginally felt when Mia was first diagnosed have resurfaced these last few months as Jack has started a new school. Its all change this year for him and Mia. I watched her begin her journey into Secondary School and becoming a teenager and she is handling it all so amazingly well. Yes shes had her bad days and her struggles but the years of hard work have paid off and she seems to be coping as much as she can. Mia is very good at self care mentally and emotionally.  Something we always felt was important to instill in her.  Autism can be so draining at times and I see it on her bad days physically drain her in everyway. I have found the last year...

 ' Autism and me' is the most honest documentary I have seen about Autism.  As I watched each person speak so bravely tears rolled down my cheeks. Every word they spoke I felt a connection with for my own two children Mia and Jack. Although no two children with Autism are the same, so many have similar experiences of how they are treated by other people or how they feel they are perceived by others. As each one of them spoke I could feel myself thinking our lives are so similar and it was so nice to feel unisolated for a change.  My tears really flowed when they showed the clip of Adam Harris as a small boy in playschool as my son Jack on a daily basis comes out of school so overloaded and as soon as he sees me it's as if I am his safe space and he bursts out all his anxiety, stress, and sensory overload. I know this is why he comes out stressed and crying because Autism has been in our lives for over 12 years now. I have learnt to block out anyone at the gate staring at ...

Dear Mia, In 4 days time  you will turn 12 and I as your mother am in total denial. The last few days I find myself looking at you and wishing I could freeze time and keep you 11. Its the age before you hit the full blown teenage phase and I get to keep you small and cuddly for a while longer. I know you think I am mad because you keep saying to me 'Mam I have to grow up I am gonna be 12 I cant wait!' and every time you say it I squeeze you that bit tighter and kiss you ten times over and say 'no no no I want you as my baby forever!' You laugh and nudge me away and again call me mad but always say 'I wove you mam' with that infectious smile you have and I wonder how much longer you will say that to me. See that's the thing about you turning 12 Mia you are well on your way to being a teenager now and not the little girl I still see in my eyes. 'Wove you' has been our words to each other since time you could talk. You say it to me at least ten times ...

as a mother I am always wondering am I good enough, Am I doing a good enough job. I climb into bed every night and I always turn  to my husband and say "I feel bad for saying so and so to Mia, Ava and Jack today and I'll try again tomorro". That mindset has always been there. He says I always pick out the negative thing I did and I could have done lots of positive things that day.  Nearly 12 years ago I became a mother and not one of those days have I ever been "mother guilt free". That guilt is there constantly. The constant self doubt I give myself on whether I'm good enough or up to the challenge. It's the most difficult  job. My friends and I always say its  so tough. And yet so rewarding. Not one of those days have I not felt that overwhelming love for my kids for even the slightest thing they may done like just coming over and hugging me with out me asking. That Tiny show of affection melts any mothers heart because really it's simple. My kid...

Ava Finn bounced into our world as a leap year baby in 2008. She was the smallest baby I had ever seen weighing only 5lbs 6 oz and was 10 days overdue! She was like a doll. Perfect. Mia was 3 and was being assessed for autism when Ava arrived. We also just bought our first house and had got the keys the day before Ava came. We were 22. Talk about pressure! All our friends were still out partying and working and we were on to baby no 2 and a mortgage!. Ava was a dream baby she slept all night from 6 weeks of age, she never cried, she was such a happy baby always smiling and Mia adored her. I found it tough with two children. It was hard going especially when you have one child with special needs. Daniel could literally only take two days off as he was so busy I'll never forget how tough it was and yet he would  come in and do every night feed, nappies, everything he could. We used to joke that Ava was so laid back that when you walked into a room Ava would not notice you  ...

When I was younger my dad always told me I was going to be a writer. I loved to write. I used to write him and my mum letters and stories.  Each time no matter what I had written whether it be good or bad he would say 'Your gonna be a writer!'.  So that was my plan. A writer who would travel the world. Kids were not on my agenda at all. My dad was a great man for giving me life lessons even from a  young age. We used to take walks together and I treasured that time together. Dad used to say 'Life is what happens as your making plans'. It was May 2003  and I was loving my teenage life, no responsibilities, out with friends constantly partying and planning to start college in September. My mum and dad were teenage sweethearts. We always looked up to them and I always wanted to marry someone like my dad in some ways. He adored my mother and she him. They had given us the happiest of childhoods and  shown us what unconditional love was. It was their time now for the...

Ever since Jack was diagnosed with Autism we have put everything we have into helping him. When he was diagnosed we did just as we did  with Mia and Ava we cried, felt sorry for ourselves for a whole 24 hours and then got on with getting him the help he needed.  We could not go in to denial Jack had to come first. My first priority for Jack was to get him speaking and into an autism unit pre school because I knew that way he would get all the early intervention straight away instead of sitting on waiting lists like Mia had and get nothing. I would not waste years. Mia had taught us everything we needed to know.  Jack was diagnosed in the May and would start in the pre school in September. I had so many doubts as Mia didn't attend a 'special' pre school but having worked in said school  I knew it was the right place for him. I swallowed any heartbreak I had over Jacks diagnosis and spent all summer trying to teach him to speak properly, he did speak but a lot of the t...

I haven't really had time to sit and write for such a long time. It has been such a busy two years filled with emotions, big changes and really new beginnings. This last two years has been the time where i learnt the most about my children and their conditions and also people and their perceptions.  It has been the year to really teach me about myself and who I am as a person . When I think back about this last two years I wonder how we have managed to get through some of it in one piece. I rarely take time to sit and think about all that has gone on in our life. I think I purposely tend to take things one day at a time because that is my survivor mode. That is the mode I set for myself all those years ago when Mia was diagnosed. 9 years ago. 9 long years in some ways and 9 extremely quick years in other ways. At the start of every school year emotions are high in our house. We never know what way Mia or her sister and brother for that fact will take to the new teachers, back to sc...

Since today is autism awareness day i decided to write about how autism has made us as a family who we are. i had never even  heard the word autism until my daughters creche and pediatrician mentioned it to me. Mia was one when she was first thought to be a bit delayed in her development. At least that's how it all started but really from the time Mia was a baby Autism was always going to be a part of our lives we just weren't aware of it yet. i still remember myself and Daniel and my mum looking up the word on the internet.. it felt like looking at a foreign language. surely Mia couldn't be autistic? But as we read on it was all at once clear Mia was very much showing the signs of Aspergers Syndrome. When you go through the process of having your child assessed it is a lonely and frightening journey. Its not a world your used to. Pediatricians, Psychologists, OT's, Psychiatrists, doctors all telling you your child has a disability. you feel winded yet relieved. Then yo...

Dear mam, Writing a simple happy birthday to u did not seem sufficient enough to tell u how much u are loved and adored. You deserve to have the best birthday today and I'm so proud and honoured to call you my mum. You have been the best mum from the first moment you became a mother. I don't know anyone else like you. You are so gentle and caring towards us et u cam become a proper momma bear protecting her cubs and grand cubs when needs be, all my childhood memories are happy ones remembering how many fun adventures and trips you and dad brought us on. You taught us what true love is with your amazing and rare love you have for eachother and for us. You taught us how hard you have to work to get things you want and need. You gave us a strength I never knew possible.you taught us respect and a sense of humour to carry us through the hard times . There has never been a time where you haven't had our back. Never a time when we couldn't have a cuddle or kiss from you an...

Mia arrived in 2004. It's hard to believe we started this journey that long ago. Our little baby girl is growing up yet I find myself struggling to think to far ahead. When you have a child with a disability it makes the world a far more scary place. Mia has Aspergers Syndrome. When Mia came into our lives we were 19. Teenagers as Mia now likes to remind us with her funny sense of humour. 'I cant believe you had a baby when you were only a teenager!' she likes to give out to me for that :) .In her mind teenagers are people who wear lots of make up and go out dancing all the time and have no responsibilities.My answer to her is always truthful. 19 is to young Mia to have babies but  God works in mysterious ways and he meant to give you to me.She loves that answer. to me that is the truth. God changed my life at that age. Mia became my reason to live again. To love again. She was perfect.To ease the heart-wrenching sadness we had felt for the year before after loosing my dad....

It's been a busy month so haven't got to write much! The kids are back at school so now I can sit in peace and write :) . We had a very good summer with mia compared to last year and i could feel myself wanting to write about how far we have all come. There was certainly bad days and a new issue for us to deal with. Mia is now suffering the most horrifying panick attacks. Weve not witnessed them before. After thr first one myself and dan were so scared for her and upset ablut how it affected us all we thought god is this how are life is going to keep going? All these new issues for Mia and us as a family to deal with. It made me think about how many 'new issues' we had to deal with over the years and how we had tackled them together and made it through. Thats what aspergers is. A constant merry go round of issues that your child has to learn to deal with and it affects every member of your family. The worst thing you can do is let the negativity take over. It shadows al...

Mia is finished july provision and it went really well for her this yr. she loved it. She got to avail of having special needs assistants there all the time. She doesn't have one usually. It was great to see her being comfortable. She bounced into the autism unit everyday chatting away to her friends, real friends that understand her and don't think she's odd or to loud. They're all so excepting of each other is so lovely to see them all be happy. Mias anxiety was quite low which was great. You'd pass the parents dropping their kids of and the smile you would give each other said so much you understood each other and their kids. No judgment. Just acceptance. I felt so relaxed Mia being there. When you have a child like Mia you worry 24/7. It becomes normal to be that way. So a break was great. Some days you wouldn't even see the autism side as much as we would normally. I decided to plan something for August as I knew it was gonna be a long month for Mia and us....

For five years we have talked about someone coming to our house to help us with Mia. Many weekends if not all we've said to each other god home help be great now. For five years we've fought for our daughter to have her right to help her live with her condition. And help for us. Before I started this blog I had fought for years and was tired and we had lost our faith in the system. When I decided to start writing this it was like I had the strength to fight again. I emailed the HSE everyday different people all in the one department. I was done playing nice and having my daughter just be a name on the waiting list. I was done trying to juggle everything and being constantly overwhelmed .last week I got a phone call to tell me that Mia had been granted 4 hours home support. I was shocked and thought it was too good to be true. I was so happy for her. Finally someone was realising what she needed. I met with the autism nurse and Mia's new home worker on Wednesday. I was nerv...

I only heard of July provision last yr. had no idea what it was. We were looking at new schools for Mia as her old school felt like they couldn't take her any further as they didn't have the resources. It had been a very hard yr for Mia and us. She wouldn't participate in class, was being bullied and was falling behind in maths in a huge way. So much so her ability was marked the same as junior infants level. She had great teachers but they had tried everything she just couldn't participate in anything.  Four weeks before we decided to change school we were called in and told the school was recommending Mia be put in an autism unit. I was shocked. We both were. We both walked away from the meeting feeling defeated and lost. I decided to join a support group and heard about EducateTogether. They had an autism unit attached and seemed to have more resources. We went up to look at it and straight away I had a good feeling about it.  They told us about July provision.its an...

so finally sat down this morning and sent off my email to the hse about getting home suppport for Mia and us.  had written complaints before but had taken a break the last few weeks  but since the blog seems to have taken off i decided id get back to it! After five years of being passed from person to person ive finally had enough its so unfair for Mia and all the other children to be left waiting years for intervention and their families positive start to the day! Have decided each day i will write one positive among the negatives we have had to face recently. Today's positive is that Mia went to school happy, and has decided that her take on 'holy god' must be heard by the priest! she has decided holy god is a 'she' not a 'he' as how would he have been able to give birth to all the people in the world its not possible. she decided to tell me this on the school run this morning all serious reading my dads bible that  was given to me when he died. she had ro...

my plan was to write in this blog weekly about our progress with Mia and the fight for services for her. that hasnt really happened its been a hectic few weeks. although saying that its always hectic. we never really get to be relaxed except for maybe the hour or two once all three munchkins are in bed! we finally got to meet the psychiatirst which Mia has been waiting years to see. he agreed Mia s behaviour and condition is extremely challenging for us but ruled out meds for the time being. we were quite relieved about that. i couldnt get my mind or my heart around medication for my little 8yr old. it just didnt seem the right time. i felt like we had to explore every other avenue before having that conversation. we had agreed the night before the psychiatrist app that we would stick together and be very firm that meds was a no-no. we wanted services not a quick fix. i have friends who's kids are on meds and each to their own. i respect their choice they have their own reasons but...