Losing my dignity

Today I lost the very little bit of dignity I had left.

Today I sobbed down the telephone to a manger of the SEN team.

Today I not only sobbed down the phone but added sob filled snot to the mix.

Today this happened while I was walking my dog in the local park.

Today not only did I lose the little bit of dignity I had on the telephone but in public.

Today I was pushed past my limit by a team who were set up to help parents.

If you had asked me 7 years ago pre adoption what I would be pushed to and by who, I would never have been even able to imagine today.

The SEN team have not down what they agreed to do which then had a knock on effect with the impact on school and the support or lack of it my son receives.

While teams and departments are not doing what they should or what they promise it is my son who has detentions and isolations at school.

It is me who is fighting and battling a system that was set up to support parents and their children. Today that couldn’t have been further from what happened.

A manager makes some progress to then have another department promise information and support this afternoon that never came.

Today is children in need day. Today it is my child who is in need but being let down.

Today I became the mum I never wanted to be, the near broken mum and the mum who should be able to put all her effort into being the mum my son needs but instead is fighting the system that was set up to help.

Numbers

This post is about summer 2017 and all about numbers

6 weeks summer holidays of which – 

We have spent 21 nights away in which 11 were camping  – mostly in the rain

7 nights spent in Spain mostly in the rain – can you see the theme?

3 trips to theme parks

1 waterpark trip

2 pool parties

Several picnics

1 friend for a sleep over

1 broken retainer brace – £75 to replace!

1 CAMH’s appointment – useless

1 referral for FASD – horay 

1 long flight delay – boo

1 sleep over at nan’s house – 12 hours of payback 

Extra grey hairs –  too many to count

Times able to parent therapeutically – not enough

Mozzie bites – lots

Amount of chocolate comsummed – I am not telling 

Alcohol drunk – not enough

Times we have laughed – 100’s

Memories made – unlimited 

Adoption camp 2017

I am typing this while sitting in the middle of a field having 10 mins to reflect on the last 8 days.

3 years ago I organised a very small informal camp for adopters which went well. Last year we hired a field and a large party tent and had 16 families camp.

This year we had the same field the party tent and organised activities 3 times a day. On paper it really shouldn’t work –

31 children from 14 months to 15 years old. 

One 9 year boy was delighted and said “WOW! Everyone here is exactly the same as me!”

Most have at least 1 DX, many had not met before, some had communication delay and for some it was their first time camping.

I came with @purdy2233 and numerous family members to set up this years camp on Sunday. We had learnt from last year that too many unstructured craft actitivies do not work so had a smaller craft corner set up.

We had a photo board of the families that came to help everyone get to know everyone here. We had an activities sheet with different ones run each morning, afternoon and evenings. We had a menu printed all of which was visual for our children.

I think the success of the camp is the party tent where we have tea, coffe, squash, snacks, toaster and kettle. It acts as a central point to cook, eat, drink and spend time with others. This year it has been the central point for sheltering from the showers and torrential rain we have had everyday! 

For me, I have loved watching the children play, have freedom, join in, talk and just have hours of fun. For the adults they have made new connections, new friends, shared stories, cried (me) and laughed until their sides hurt. We had several families come to visit for the day and one family wrote “no amount of therapy could help my children as much as this trip has.” 

I am so lucky to have such amazing friends. We all know that adoption is extreme parenting, takes us to our limits and beyond and is often reletless. This week has confirmed that adoptive parents are truly amazing, have the most funny stories to tell, are open, honest and love their children no matter what! 

None of the camp I could do without the amazing @purdy2233. She does not know how much she gives, the energy she has and the never ending support.

We are knackered! Dirty! Smelly! Have sore throats from talking far too much, ache from head to toe but can’t wait to do it all again! 

Below are a few photos from the camp. I just wish I could share the smiling, dirty faces of the campers.

Adoption camp 2018 planning has started! 

Just a mum trying to do her best …..

Over 6 years ago Spud burst into my life. He is the best thing to have ever happened to me and I honestly couldn’t love him any more.

For 6 long years I feel like I have been fighting/battling and pleading for support.

Spud was over 7 when I adopted him. He is now the most georgous teenager.

Today I had a heated discussion with post adoption support manager and ended up crying and telling them that I had had enough of the fights, the battle and having to beg for support. 

I am not the one who caused my son neglect

I am not the one who abused my son

I am not the one who took drugs and alcohol while pregnant 

I am not the one who left my son to starve

I am not the one who put him in hospitial due to the injuries from abuse

I am not the one who who got high and couldn’t look after my son

But I am the one who is trying to put things right

Trying to make him feel safe, 

Helping him to learn to trust adults again,

Assisting him to make friends

Sitting for an hour every night rubbing his feet while he tries to sleep

The one who takes on the school to get the support he needs

Has a fight with the LA for the EHCP that is so desperately important

Sends emails begging for support to help him

Makes call after call chasing professionals for information/appointments and reports

I am the one who gave up work to ensure I could try do my best to meet my son’s needs

Who has cried so many times with sheer frustration

Who’s whole life bares no resemblance to the life I thought it would be

Today I decided that enough is enough and I can no longer go on fighting a system that should be there to support us. A system that is underfunded, short staffed and stretched to it’s limited but a system that made me cry again today. 

Today and everyday I am just a mum trying to do her best and being knocked back at every turn. 

Thinking ……

I have been thinking the last couple of day, I always find thinking dangerous! 

Anyway, I was thinking about how Spud would have been if he had been matched with different adoptive parents. We were in a competitive match for Spud. The other adopter was a single adopter who I know although did not know we were in a competitive match at the time. She couldn’t be more different to me. She is laid back, spontaneously, travels around with work and single.

I am a control freak and have found this side of me increase since Spud came home. He has needed routine, planning, information, structure and home time or has he? 

Would he have thrived with a very different life? Would he have preferred to have traveled around the world with the other adopter? Would he have coped without routine and a much more spontaneous life? 

Have I changed to meet Spuds needs or has this side of me just come out and I use Spuds needs as an excuse? 

Did the social workers get it right? 

I can’t imagine my life without Spud and so pleased that the social workers did decide that we were the right parents for Spud. 

Happiness is……..

If you had asked me 6 or 7 years ago what happiness was, I know it would have been very different to now. Would have entailed a beautiful beach, sunshine, friends etc.

Today happiness is very different.

We have been on holiday to Egypt for a week. Like many adopters we had to go through the pain barrier of holidays to even start to see the other side. We have had holidays where Spud didn’t sleep at all. Holidays where Spud spent most of it in tears. Holidays where I spent most of it in tears. Holidays where Spud would only eat spaghetti bologonasie and that included for breakfast! 

I am awake very early on a Sunday morning listening to Mr Football and Spud snore in unison. Looking back on the past week I have decided that my happiness is –

Spud sleeping in his own bed – yes it is 6 foot away from ours but he is still sleeping in it.

Spud eating anything and everything – yes that means 6 ice creams during the afternoon but we are all inclusive.

Spud making friends – yes they are younger than him and he can control them but they are having fun.

Family time playing in the pool – yes we are only a stop gap until Spuds friends come to play but we are playing.

Learning a new family holiday game – yes again until Spuds friends have have dinner but we laugh together. 

Being able to sit at a different table at mealtimes – yes Spud did spend the whole time giving death stares to the family sitting at “our table”.

We have had the difficulties like one day when it was windy by the pool so we had to sit on the other side. Spud could feel the difference, we explained why but for 30 mins anyone watching would have thought I had told Spud he was grounded for life.

Suddenly realising that the rules we put into place need to be given everyday and in fact, several times a day. I learnt very quickly that the rules I put in place on Monday, did count on Tuesday as it was a new day according to Spud! We now go through the 5 rules at every mealtime. It makes it sound awful having 5 rules but they are –

1 – Don’t climb up the water slides.

2 – Don’t swim under the water slides when people are coming down them. 

3- Don’t run along the pool bar.

4 – Have fun.

5 – Remember we love you. 

Not the hardest rules in the world! 

So back to my happiness, we have 4 whole days left and then we have made it! 

On a last note, I have discovered Gin 😀

The hamster wheel

Battles, fights, disappointments, being let down and misunderstands seem to have been my life for the past 6 years.

Before I adopted Spud I always thought I was a fairly strong person. Never has this been tested more than the past few months and it feels like it is ongoing. The told me during prep training I would need relisiance, be an advocate for Spud and stay strong for him. I didn’t realise they meant that this would be the case each and everyday. 

The past few months have seen me trying to get a referral for FASD. This was never even mentioned as a possibility during prep training. Drugs were, trauma was but nothing about FASD. Spuds birth mother died fairly recently and at a very young agefrom alcohol related disease. The coroner told me that there was clear evidence of very heavy drinking for the past 15-20 years. Meaning she started drinking in her early teens. Spud has a DX of ADHD and RAD both of which took a fight to get. There was always a feeling, a nagging I had that it was more. 

After I spoke to the coroner, I  started looking into FASD and to be honest, it was half hearted and reading documents through my fingers. A friends daughter was diagnosed and we spoke. I then attended a training session on FASD and it was like a lightbulb.  Spent the whole day nodding my head, feeling excited that this was Spud! Everything the trainer said and described I was agreeing with that Spud did it. It honestly felt a relief that there was something else. I was not just the neurotic mother I had been called. Suddenly there were people speaking the same language and understanding the subtleties of everyday life with Spud.

I made an appointment with the GP and poured my heart out. He looked stoney face and said that I had to take Spud back to see a GP before a referral could be made. I made another appointment, explained to Spud why we were going to the doctors and explained this in the best way I could why I was taking him. When we looked together at FASD he kept saying “that’s me mum, I do that!”

We went and saw the GP and went through the basics again although she had read the notes. Referral made to paediatrician – great! 

3 weeks later I call them check the referral had been received. I was told that the NHS had cut the funding and the paedtrician was not not commissioned for “just FASD”. She was unable to see us! Back to square one. No one in my LA or neighbouring LA’s has been commissioned for FASD.  I found a clinic a couple of hours away who would take an NHS referral but needed my GP to agree to fund £3500. This of course has to go to CCQ panel for approval and can take up to 4 months! 

I have written a very detailed statement to go through the CCQ and have my fingers crossed. In the meantime the EHCP is still not fully finalised despite us being in version 3 of the “final” plan. Errors, missing support details are just a couple of reasons we are currently on version 3.

We also had the communication and autism team not turn up for a pre arranged assessment due to them “being too busy.” For those of you that know me can imagine my face, the steam coming out of my ears and the shear desperation and frustration!

It really feels I am on a hamster wheel that each time I think I can step out, something comes along to speed the wheel up and I have to keep going, dig deaper and use much more energy just to try and stay upright. 

I knew adoption was going to be difficult but never thought it would be so hard to get the support and help we need.

Lying – being lied to and about

This blog is very likely to turn into a rant for which I apologise for. I am hoping once I have written it I will let go of some of the anger and frustration I feel.

Have been fighting with my LA to get an EHCP for Spud. He needs the extra help and support and understanding to feel safe at school and to even start thinking about reaching his potential.

The flight has been a fight and not easy. I feel that Spud was left down by the corporate parent during his 4 years in care and continues to be let down by the same organisation.

I could write a book about the difficulties with school but will save that for another time…….

This week I received the legal and formal ground of response from the LA on why they will not issue an EHCP.

I read through it and became shocked/frustrated and very angry over the lies in it. A “professional” who is in a power of authority has lied, not once but at least twice in the report. The very basis that the report has been based on a lies and huge great lies that can and are being disproved. 

I threatened a sit in at the County Hall where the LA are based unless someone saw me. It is not their first time I have had to do a sit in and I fear it will not be the last. I was seen and had taken the evidence I could very quickly gather to prove it was all a lie. I felt I was listerned to and it was taken on board. I went away feeling very slightly better. That was until I received an email from the said “professional” trying to cover their bottom with more lies and referring to the evidence I had taken to the meeting. This clearly demonstrated that the LA had gone straight back and told the “professional” about the evidence I had.

This made me feel rather uneasy but I guess I should not be surprised.

I then received a letter with the minutes in where they refer to Spud by a different name. Do they really care? Is it OK to get names wrong?

Again I went into Veruca Salt from Charlie and the Chocolate Factory mode. I really thought I may burst with anger! This was a meeting that had been recorded to show the LA did care, they were interested but instead they couldn’t even get his name right!

I am now spending all my time and energy in compiling a huge report with evidence to prove they are  lies, they are great big lies and not “misunderstandings”.

I am not going to let the matter go, I am raising complaints and I want changes made but I want my son to have the education he deserves, to stop being let down and have a chance to reach the potential I know he has. Is that really too much to ask? 

NAW – Support

So as National Adoption week with the sub header – Support, comes to a close, I find myself typing this blog.

We adopted nearly 6 years ago. I feel that the prep training we had was so much better than it is now. However the post adoption support maybe better now. I remember the very early days of adopting and trying EVERYTHING to get the support we so desperately needed. I resorted to sitting the the reception in the main Council offices of my LA refusing to move until someone helped us. We did get support but should it really have come to that?

The ASF was like a present from Father  Christmas. It came with promises, hope and a way for us to get support all wrapped up in a big bow. Of course between us and the support we had to run a marathon, high jump some hurdles and wait, and wait and wait a bit longer but the support came. Last week we are told that Father Christmas is not real and his Elves can only allow a maximum amount of support per child. I think I understand some of the reasons but does not mean I agree with them.

Over the past 5 or so years I have found an inner strength to fight for my child and my family. It has come at a cost as I feel I am not able to be the parent I wanted to be. The fight for support takes so much time, energy and reliance that I seem to have little left to be a parent. This week I left my very part time, very flexiable job as I felt I could no longer carry on not giving 100% to either Spud or work.

School has been my biggest fight to date. EHCP that was rejected, TAF that no one was invited to, meetings where “managed move” was discussed without any warning or preparation to name just a bit of my week. Ironic as it was National Adoption Week – Support this week! Trying to help education understand our children. How the language they use impacts our children and us as a family seems an impossible task for me. 

No my child does not “chose” to ignore you but is has disassociated. Yes he does find change difficult and no “it is not on purpose he is unable to cope in class with an unknown teacher.” No my child is not “just naughty” or “have bad behaviour.”

I guess it is very difficult when you have a class of 30 children to change the way you work to help that 1 child but is it really so difficult to acknowledge him when he walks into class rather than have 10 minutes of him up and down in his chair trying to get your attention? 

Earlier in the week I attended training on how you can help your SEN adopted child, what support is available and what reasonable adjustments could be. That was run by adopters who work in education. Thank goodness I had thatntraining as it gave me information I needed to cope with the rest of the meetings that week. 

This week the support has come from amazing friends and my family plus the post adoption social worker. Without  the support from twitter friends as well I think we would be in a diffent place now. 

I don’t know what the next few weeks are going to bring, I expect them to be full of meetings, heartache, tears and difficult decisions but know support for us if there for which I am forever grateful.

If there was one thing I wish I could change about the support is the ability to access it in a timely manner, when we need it not when it can be provided. 

Without some of the struggles I know I would not have received the amazing support I have and I am very thankful for that! .

SUMMER 2016 – Keep Spud out of trouble

So Spud is nearly a teenager but emotionally much younger. He is easily led, gets bored very quickly and has a huge need to impress his friends. None of these are a good combination for the long summer holidays. Spud is a delightful child but needs help making the right choices. 

Back in January I decided that this would be the summer I needed to build my attachment with Spud, keep him from hanging around the streets and keep him busy. His peer group seem to be hanging about the streets for 12 hours a day everyday. His peers seem to spend all their time just hanging out and often getting into trouble. We don’t live in a particularly rough area but gangs do hang out.

This summer I have camped, camped and done a bit more camping. Spud is much better outside and away from electronics. We started the holidays at a large camp with other adopters that I organised. 28 adopted children with a variety of diagnosis, needs and ages. On paper it should never have worked but it did! It was a lot of work but @purdy2233 was brilliant and helped before, during and afterwards. The camp was so successful that next years is already being planned with a few more families joining us. 

After the busy camp it was great to have a very relaxed camp with @purdy2233 and @twoplusmunch. The kids played, the weather rained but we had chance to chill. I love spending time with them as we just laugh! 

A few day trips broke up the next couple of weeks and due to being away for the first couple of weeks, Spud wanted to be at home and not hang out with his friends – result! I was by this stage on countdown for the number of days I needed to keep Spud from getting into trouble.

At the end of the summer we had a week away with @purdy2233 and her amazing boys. We took the boys away abroad. We had a great week in the sun around the pool. For the days we planned the same routine. The boys sat at the same table for each meal in the same seats.  We kept everything very simple. The boys did so well and at times, it felt like a proper holiday with moments of chill time. It was incredibly hard work being away for a week and keeping everything as regulated as possible. At one point I was going to take Spud to the airport and put him on a plane home! 

Then the summer was over! Back to school and I could breath as I had managed to keep Spud out of trouble! 6 weeks of him having simple fun, building attachment, making memories and having fun but being kept VERY close to me.

I am still knackered, friends have commented how busy our summer was and I just smile. 

Summer 2017 is already being planned and lessons from this summer have helped with the plans. Camping being organised with other adopters, holiday again with @purdy2233 but we have booked a villa for next year. It means more work for us but hopefully much more relaxing and regulating for the boys with less pressure from everyone around them.

There is a need for Spud to spend time with his peers but too much time would not have worked for Spud this summer. 

This summer we laughed and made memories, positive memories.