Independence Day

This is my son, the first born , my first adopted, the child who initiated me into motherhood and set me on a path I had never envisioned.

He has non-specific learning disabilities and came to me as a little scrap of humanity aged 16 months barely able to sit, not able to move and showed no contact with the world around him.

He is now 26 years of age and about to embark on the next stage of his life-----he is moving into his own flat with support from an association. He is excited, I am terrified! We had talked  about it before but the flat (and funding)  came sooner than expected; I had thought it would be years not weeks!

His only question when told it was happening soon ---"Will Uncle Paul be able to come and stay?"!

He is not my first child to leave the nest; his NT 23 year old sister has already moved out but this one is so hard.

Post school

Having started the blog as my 1 of 60 before 60 I realise it has been months since I posted. Such a lot has happened in the meantime and such a lot is going to change in the near future.

Ellen, my child with SMS, turns 18 this year and has to leave school. I have visited lots of places for a post school placement and found a lovely place that is run by Camphill. Ellen is at a Camphill School and the ethos and life style really suit her. The negative side is that Beanaccher is nearly a 3 hour drive away so i will not see my baby as much as now. We are waiting to hear about funding; I am trying to stay positive but afrais the negativity is winning! hopefully I will hear this week.

It is hard enough seeing your children grow up and become independent but when they have additional needs it makes it even harder. I want Ellen to be under 16 again and to stay there! However seeing her mature and become independent and capable is heart warming. The battle just now is to get those in authority not to hold her back because of their uninformed opinions.

Ups and downs

This past week has been one of highs and lows and most of them concern Hope. Hope, as most of you know is 13 with severe cerebral palsy; she is non-verbal and totally wheelchair dependent.

The first 'low' was on Wednesday when I had a call from school saying that somehow they had missed feeding her in the morning. It was discovered at 2.30pm when they went to give her her pm feed. It caused a lot of emotions! Next came a meeting with the council re the respite provision she receives (all 39 families were invited 5 attended); I had been waiting for this as there is less money and a lot more children needing to access the service. It came as no surprise to hear they were setting the standard as 28 nights and, if I understood it correctly, never more than 4 nights together. Hope currently receives 37 nights---10 months at 3 nights and a 7 night break in the summer holidays. The harrowing low was watching some of the programme about abuse in a care home. I have 3 children that will need on going care.

I sat and listened to people saying they can imagine what our lives, as parents of special needs kids, are like---NO you can't if you are not a special needs parent! Even then it is very hard unless you have spent at least a week in someone else's shoes to fully appreciate our lives. We regularly have to open our lives and our homes to lots of other people--privacy barely exists. We have to trust lots of people with the care of our children --hard enough with typical children harder with those who cannot make their feelings known, who cannot make their wants known. Do people realise the effect on our lives of failures in any system

The highs this week have made me jump for joy!
Hope is now using a dynavox and has surprised the speech and language therapist  with her ability. At last Hope will have a voice; yes I have no doubt she will play me up with her requests but to know she has control and choice in her life surpasses all else.

Paul, my 23 year old learning disabled son. plods on wirh his life ---ASSET on mon and college on wed (but only for 2 more weeks). On Wednesday he came home with a first aid certificate detailing all he can now do---I am very proud of you Paul.xxx

Arrivals

I have still not managed to upload photos and will learn one day!

I am sitting here pondering over the last 11 years as it is the annieversary of Hope arriving in our family; it is also her 13th birthday. My baby is a teenager!!!
The past 11 years with Hope have been nothing if not eventful with stays in hospital too many to count, several major operations and 3 times when I sat at her hospital bedside praying she would survive (1 time included an emergency dash from our local hospital to a major children's hospital).
Hope came into our family as the "unplanned" child --if you can have such when you adopt! My first 3 children I went looking for but Hope found us. Never will I forget meeting her for the first time, never will I forget the traumatic 10 days spent in an hotel with 3 children -one of whom has SMS-and never will I forget the day she eventually arrived. She was meant to be in my house around 3pm but it was after 7 when this sweat drenched, screaming scrap of humanity arrived.
Hope was 2 weighed under 7kgs and was the size of a 9month old; it is all thanks to her foster parents that she made it to her forever home. Now Hope is a thriving teenager who loves life; she has a wicked sense of humour and a simple stub of your towe with an ouch has her in fits of laughter!
Hope has taught me a lot about life and about myself; life without her would be so different.

Love you Hope.xxx

Getting Started

I still having nothing deep or meaningful to say but thought I better try and do more!
Life with the Wotherspoons continues to be eventful with things coming from all directions both good and bad.
Ellen can be very unpredictable thes days with her irritibility levels sky high;equally she can be so loving and very helpful around the house. She loves being in the kitchen and doing the cooking; she is getting very good at it too. She is coming to the end of her penultimate yeat at school so the dreaded transition to adult services is under way--where did the time go? It seems just yesterday I was sitting in a room with about 12 other people who were about to decide whether I could become mum to this little girl! I remember well the first time I met her too with her big blue eyes and fair hair; she was 11 months old and could barely sit. Now keeping her still is hard! She loves her archery and the athletics club.

Hope is growing up fast too and will be a teeanager in a few weeks; she is a far cry from the tiny 2 year old that came into our family. She continues to have significant health needs with some things improving and some things deteriorating. I keep thinking we have come to the end of surgery but something else always seems to pop up. Last year she had hip surgery in Feb. and spinal surgery in Aug. She coped with both ops well but both time got an ileus so had extened stays in hospital. Now I have just been told her baclofen pump needs replacing as the batteries are about to run out! Will it ever end? Mind you keeps us occupied.

I must not forget the older 2 children and the grand kids but that is for another time (I may even have worked out how to upload pics!).
Hazel

Following other peoples blogs has been a fantastic experience for me. I have recently decided to try and do 60 new things before Octber 2012 so this is the first!
 I may not have wise words to publish, I may not have an interesting life but I will have a chronicle!
This is the first posting and not being very tech savvy it may take a while to get a decent blog going; however I am doing this for me.