Remember remember…

Each month this year which corresponds to the month our kids came home I’ve written a blog. So here is the final instalment..

November 2001 we got “the call” We got on well with our social worker & in his charming Irish lilt he said. “We think we have a match” followed by “we need experienced adopters for G” Now if you are an experienced adopter you will know exactly what that means….!!

We listened to the details & agreed to meet. We had already adopted twice & so this was to be our third adoption in 4 years. We had a 4 year old & 2 year old. Yes I know mad or what?!!

I’ve written about G’s extensive medical problems in her first year so won’t bore you with the details. Personally we’ve always made a decision on accepting a placement before seeing a photo,simply because we knew once we saw a photo that would be it!

So we decided “yes” We saw a photo of our new daughter. We realised later why her social worker had put a hat on her in it. Medical procedures had led to her having hair shaved! We still fell in love with her immediately we saw it….

So we met on a cold November day. Our social worker had warned us about the extensive scarring on her body & said she looks a bit like a drug addict she has so many needle marks! She was only 10 months!

She checked us out when she met us. She’d had so many carers in her first 10 months I’m guessing she thought here we go again. Her foster carers were amazing. They explained the medical procedures we had to do & said we needed to change a nappy. I thought it was a strange request given we had had 2 other “babies” but as soon as we did we realised why! She has short bowel syndrome as a result of early surgeries. Everything moves through at the speed of light. If you’ve ever had a baby with a tummy bug imagine that 24/7 every day every week for ever!

Yet despite all this she was a feisty, happy little baby. Introductions were short in those days & she came home quickly. We all loved her & so did our family & friends & I took full delight in having a little girl after two boys. We adjusted to her medical needs & although I look back & think how did we do it we did! There was no real support after adoption then either practical or financial  so I guess we just got on. Thankfully shortly after her arrival our health visitor left & a very good new one arrived! She was on our case straight away & we are eternally indebted to the help she arranged for us!

So began a new chapter in our family life. G began to thrive physically & took no nonsense from her two elder brothers! The physical scars of that first year began to fade.She made rapid progress in her delayed development. The emotional scars though were buried until adolescence. We admire & love our daughter for her strength of character. She went through more in her first year than many will go through in a lifetime.

Yes she is going through a hard stage as she processes her early trauma but we are confident she will get through. She always has & so will we…img_0104.

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Baby A & Baby B

So its January 2001. Two babies are born baby A & baby B. Baby A is born into love & nurture. Familiar smells & voices. An adoring extended family. Photos taken to fill the album. Warmth safety & care. Baby B is born & cannot feed. Mum is distracted. It soon becomes apparent baby B is sick & is rushed in a blur to another bigger hospital. Mum doesn’t go with her. Baby B is sick & hungry & in pain. Baby A leaves hospital & goes home to a new nursery, flowers, presents & cards. Baby B goes into theatre & then ICU. That will be be her “home” for the next 6 months.

3 months later & baby A is smiling to the delight of her adoring family. Baby B is failing to thrive. Her ileostomy is reversed in an attempt to get her to put on weight. She isn’t feeling like smiling & anyway the familiar faces keep changing. Baby A loves someone coming up & cuddling her. Baby B cries as when people approach her they “do something” like an injection or feed tube.

The season changes & baby A has a whole new wardrobe. Cute little clothes. The nurses bring clothes for baby B because no-one else does….They think to take a photo it’s a bit blurred but they do their best with a Polaroid camera.

6 months & baby A is sitting up. She sleeps well & feeds well. Baby B leaves hospital at last but goes to a different place. At last she starts to thrive & the tube feeding stops. She’s never had the sensation of being  “hungry” though as tube feeding has been continuous so she isn’t happy. Then she has an infection so is blue lighted to hospital & resuscitated yet again.

10 months & it’s nearly Christmas. Baby A is a delight. She’s starting to crawl. Baby B is not yet sitting up. She’s finding drinking from a cup hard.

Things begin to look up at last though for baby B she’s moved again & her health picks up. She has a new family. She has a lovely room & clothes.The people around her aren’t going anywhere & she likes that. She isn’t sure but she thinks these people are ok.

Then it’s Christmas & both babies have a lovely day. Photos, presents, cards & love. What different starts to life though. How different their  first years are?  Never mind they are only babies & so baby B won’t remember will she….? She’s described as a “fighter” on her hospital notes so she will be fine..?

Then it’s January 2002 & baby B has a hospital check up on her birthday. She’s made it to 1 despite the odds against her! The paediatric gastric doctor (not known for his bedside manner) seeing her new carer doesn’t say Happy Birthday. He says to the carer “So are you it now?” Through gritted teeth her Mum says “Yes we are “it” no matter what, forever.” Baby B smiles at that point at her Mum. Seems like she knows things will be ok……

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Automatic Doors?

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Today just for a change (note the sarcasm) M & I had an appointment in Leeds. Because of traffic & also because anywhere  I go I have to allow at least twice the time it should take to get there, we arrived early….The latter is now a family joke!

We found a nice coffee shop & settled down. There were two entrances & we sat down by one. We noticed someone walk up to the automatic door & it didn’t open! We observed this pattern for about an hour! Some people walked up to it looked rather embarrassed as it didn’t open,gave up & headed off! Others maybe more used to the cafe walked round & found the other entrance. Some were more inventive & prised the door open manually (but then didn’t shut it so M kept having to  jump  up close it! It was very draughty!!)

This given the nature of our appointment made me reflect on our adoption “support” over the last 20 years. When we started our journey it was very different. Post adoption support or advice on how to claim appropriate benefits etc  didn’t exist!

I guess in the early days we “coped” Then a few challenges crept in. We rather naively expected “doors” we approached  for support to open automatically. We soon found that’s rarely the case.

So over the years we’ve approached many so called automatic doors. They may have an automatic label but they remained firmly closed! These included/include the NHS, Post adoption support, Education support & health related benefits. So through bitter experience we’ve learnt what to do. To those who know me I’m not one to walk away from a stuck door! I’ve learned to find other entrances. Prise open doors & a whole lot of other methods! On our return home today we found a “lovely” brown envelope waiting for us (or rather for our son) On opening it (as we knew the contents & had asked permission) we found our latest “door” shut.  So it’s time yet again to find another way in.

Sadly some people will walk away from the very stuck doors they need to open. Some need a hand to help to open it & haven’t got anyone. Some lose the strength to prise open doors.

We were assured by the cafe staff the fault had been notified & engineers would be repairing it soon. Mmmm I’ve heard that one before…

Meanwhile for our “stuck door” we are looking & have found another entrance. I’m determined to get that “coffee” somehow….

 

Grace, we could all do with a bit more…

Yesterday we had a follow up to our years therapy provided by the Adoption Support Fund. We are very grateful for all the input we had & although realised long ago it’s not a magic wand it’s made a big difference to us.

That’s not what this blog is about though. As we waited in the car for our appointment yesterday my phone rang. Grace goes to theatre class one evening a week. She changed groups to the older class recently & instead of being met in town by the theatre staff they ring the bell & go up to the group. It’s a new group of young people & if you are an adoptive parent you can probably see where this is going! So the night before she’d bottled out at the last minute. We waited in the car & her anxiety levels rose. I have to say my therapeutic skills were stretched! Mark was away & I’d slept badly the night before. I managed (I think!) to not show this! “Let’s get chips”  I said & we did. Standing in the chip shop she said “Sorry Mum its the buzzer I can’t do the buzzer I need to get over this & it’s new people I don’t know them” I reassured her & said it was fine & I was sure we could sort this..

Well that’s a huge step in itself in understanding her own feelings. She spent her first 6 months in ICU & neonatal wards which I guess were full of buzzer beeps & noise. She needs to trust people & new people are a threat. Buzzers represent physical pain & procedures  and abandonment & a whole lot more

However her drama teacher was amazing on the phone. She said “Next week I’m going to be at the door to greet the young people. I’ve quietly asked some of the group who I trust to be sensitive & to look out for her. I’m also wondering if she would help me out for an hour with the younger kids on a Saturday. She’s a natural at drama & doing well at her work experience in nursery & shes an asset to the group & I don’t want to lose her”

At this point I could have hugged her except I was on the phone & just about to see our therapist! There’s lots more I could say but wouldn’t be wise on an open forum. That’s “grace” & a whole lot more. It’s a person who sees beyond the behaviour to the potential & wants to be inclusive.

I also realised despite our many teenage ups & downs how much I admire my daughter for engaging in therapy at a distant for a whole year & how much I love her. We’ve a way to go I know that but that was one massive encouragement  from a very unexpected source!! Amazing Grace….image

 

 

Resilience..?

I’ve been thinking recently about resilience & my curiousity was widened by the media coverage of the Somme. If you’ve been following my Twitter over the weekend I’ve been finding out about my Nan. My memory of her is of an elderly lady. If I’m totally honest I was a bit miffed at the time that she died when I was 10 because she gave my elder sister a pound note when she passed her 11+ & got a place at grammar school!! It’s only growing up that I realised what an amazing person she was. She’d joined the WAAF in WW1 & gone to Sanctuary Wood Ypres in 1917. She lived through the Great Depression & worked in the Jewellery Quarter in Birmingham. Following this she lived through WW2 in Birmingham one of the most heavily bombed cities.

Yet despite all this she seemed so normal She must have seen the most horrific things in WW1 & WW2 but described the parties that went on in the Officers Mess in WW1 & much champagne drinking!

People have always said to me “you are so resilient”. I’ve been through quite a lot. Both in my own life & the lives of my children. I’m not a psychologist & I’m sure there are lots of theories but did I inherit that resilience or did I get it through overcoming?

My daughter went through so much in her first year. I remember her foster carer saying “She’s a fighter the last baby I fostered wouldn’t have got through what G did” So was her body already hard wired to survive?

Resilience is both good & bad. Good in that it helps you survive Not so good in that people expect you to cope because you always have. They don’t see beyond the shell or the mask. You don’t always get the very help you need because “being resilient”you are expected to cope.

My Nan was of a generation who didn’t discuss feelings. Who kept many of the dark secrets of war to themselves. The memories were too painful to discuss. Thankfully things are changing. Talking is encouraged. What was then called shell shock is recognised as PTSD.

Maybe my Nan responded to this poster in 1917. I wish as an adult I could talk to her now & find out more about her life.

I’m proud of her & grateful if she passed on the gift of resilience I hope my kids inherited it from their birth families & learnt it from me growing up. I’ve had some very difficult times but survived. Two will soon be going into the big wide world. They will need it even more with various health conditions etc to cope with. So resilience, nature or nurture? I’d hazard a guess it’s both.

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Dear Mr Assessor….

Dear Mr Assessor

Frankly I’m disappointed that you didn’t get so many of the visual clues that were handed to you on a plate 2 weeks ago at my sons PIP assessment.

Im not going into too many details but saying a young person who jiggles their leg constantly when talking during an assessment  has “good focus” Really? The reason we got a diagnosis was having one parent’s evening too many being told (me & him) “Why can’t you focus?”

The young person said they struggled with public transport but you put “he is learning to drive” so that’s ok then? Maybe that’s why he’s learning to drive? Go figure…

He doesn’t struggle with money because “he has a bank account” I could tell you a few stories but obviously I couldn’t.

He was teased last week because he’s taking his maths GCSE for the third time. But he has “good budgeting skills” He’s a bright lad who loves learning & yet his brain has “disconnections” due to alcohol use in pregnancy but that’s ok isn’t it it?

“He’s doing A levels” you wrote so obviously that means he’s doing  ok. Do you know how much “scaffolding” has gone into him to achieve getting to AS levels. No quite frankly you don’t.

You alluded to being a parent of teenagers. So we are in the same club then? NO! You also alluded though didn’t quite say it “All teenagers do that” Grr. Really?

My lovely 17 year old got a diagnosis of FASD last year which brought to an end 16 years of questions. You refused to look at my short leaflet on FASD. We’ve paid out a lot to get him the help he needs over the years. Maybe we shouldn’t have done that. Maybe we should have let him fail…..What would you have done?

Its not even about the PIP money it’s a pretty measly amount. It’s about giving young people support. Those who have lived through more in their first few years of life than frankly you ever will.

It’s not just about my son I wish it was. I’ve heard many more stories like his Mr Assessor.

So Mr Assesor would you put your son through an assessment which was as helpful as a chocolate teapot? No. Shall I get him to phone tomorrow & ask for a “mandatory re-consideration” Would you like to do that to your son? He’s 17!!!

Now maybe I’m being unfair. I know you don’t have the final say. I know you have your target 37% to pass & if my maths are correct 63%to fail?

I also know you didn’t realise that I was fielding “No caller ID” calls on the way to the assessment from our school. You’ve probably never had those have you?

I wish this was just my story but it isn’t.

However dear Mr Assessor we won’t give up. I just think it would be good to employ assessors who were trained to recognise subtle clues & as I’m sure you know Mr Assesor as a parent of teens yourself no 17 year old wants to stand out & be different when interviewed.

Best wishes

An angry Mum.

PS Don’t worry Mr Assessor I have a long term immune condition but those that have fought their own battles will keep on fighting for others.

PPS This is my son at 3 months Mr Assessor. Rather cute don’t you think? We will stick with him whatever happens because he is one determined, loving young man…& everyone deserves the best chance in life? Don’t you agree Mr Assessor?image

Cloudy with a chance of pain

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I must start by saying the title is not originally mine! I do love it though.

Following on from my last blog about my daughter I thought I’d write a bit about adopting children with physical medical conditions & managing pain. Not the jolliest of topics I know but nevertheless important.

3 of us in our family live with chronic pain & though we look pretty “normal” (I hope!) it does have a significant impact on our lives.

I was diagnosed with a progressive form of arthritis at 21. My eldest son has a vascular condition he was born with. Our youngest has a part of her bowel missing & that significantly impacts her life.

These are the physical conditions my children live with. There are plenty of other twists & turns given the nature of our family!!

Getting appropriate help for these conditions especially for my children has been tricky at times. Quite honestly the physical health conditions have been as hard to manage/get help for  as the emotional given the state of the NHS. I’m a great supporter of the NHS, indeed it saved my daughter’s life but help for chronic conditions is pretty bad in my experience. Actually it’s b…..y awful!

We also have to factor in the complexities of adoption. My daughter said just this week “what if my birth mum caused this?” She’s angry with her birth mum right now. All 3 potentially have conditions that were probably caused by un-wise pre-natal choices & lack of ante-natal care. Difficult to work through  in the teenage years when adopted kids are working out their identity.It adds another layer of complexity. A lot of the therapy my daughter has had this last year has centred around medical trauma with the added complexity of abandonment & attachment issues.

Very occasionally someone has asked me why I adopted given I had a medical condition? In my 20’s no-one knew how my disease would progress in fact my Dad who had the same condition had a very mild version.Indeed current thinking then was it would burn itself out & that women usually got it in a milder form to men. Sadly as some of you know it didn’t quite turn out that way for me though it’s been a slow progression.My consultant at the time was fully supportive as was my GP. In fact the consultant said “who knows what will happen in life to anyone?” I did though want to adopt whilst relatively young given my circumstances. So we adopted 3 times in a 4 year span!

What I do know is it’s given me an understanding of chronic disease which I’ve used to my kids advantage. I know how the NHS works & have played the system. I’m a pro on appointments. I’m an expert on pain relief which comes in handy! I also know that it’s tough & try to help my kids on the days when it’s just plain rubbish to have to cope with debilitating symptoms.

I’m generally a positive person who gets on as much as possible with life despite my health but I too am only human. I’ve had low dips some very low dips. I’ve also had several hospital stays. Just this week I could fully identify with some of the frustrations which my daughter was voicing.

So would I do it all again in hindsight. Would I tick that box on the adoption form saying “Willing to adopt children with a physical medical condition” Yes I would. What do people often reply if they are asked if they are hoping for a boy or girl when pregnant. “Oh I don’t mind as long as they are healthy” Health is precious. However life can generally be lived well with a disability given the necessary support. We do use rather dark humour though in this house. I’m sure you have already worked that out!!

I’d love my kids to be physically fit especially at this stage of life. I’d love them to be able to stop medication. I’d love two of them to be pain free. Yes life does seem very unfair at times. I’d also love the NHS to be far more pro-active in managing debilitating conditions especially for younger people/adults.

Would I change our family. No. We laugh. We cry. We hope for medical advances & because we have a faith healing. We support each other through thick & thin.

Sometimes it’s cloudy but we know there’s always going to be sunny days too & the dark days make the bright days even more stunning.

PS. In hindsight we don’t look pretty normal! We walk with a limp but hey ho who doesn’t……

PPS My teenagers love my recently acquired blue badge for parking it means they don’t have to walk far! I have my uses I guess….!