Thursday, 31 March 2016

Guest Post: Not All 2 Year Olds...


It's often difficult to explain Foetal Alcohol Spectrum Disorder , never mind how it effects a child. It's such a huge spectrum and unlike other spectrums, where you sit on it in terms of diagnosis, has little to do with severity but rather at what stage in pregnancy alcohol was consumed and if the effects are physical, emotional, behaviourally or most commonly a mixture. The simplest explanation I find is to say that my child, Annie, has brain damage. It's an uncomfortable thing to say but it's also true. (I'm still learning about the neurobiology of it)
I'm well aware when people see my bright, entertaining and lovable child and I talk about her special needs I sometimes sound (and feel!) like an impostor. When I explain her behaviours and challenges I know I am usually describing what most parents experience and it's hard to see how this isn't the same and how I'm not just a new parent freaking out (although I have been prone to do so on occasion). So I took this idea from a great blog I read earlier and thought I'd give it a go. My house is full of laughter and chaos. Currently as I type, Annie has made her own game from a plastic tomato and cup which is making us both laugh. (Although it's very rare she will play without my undivided attention) I never knew a 2 year old could have such personality and make me laugh so much. But it's always a constant balance of letting her have fun but trying to time how much stimulation she can handle because if I get it wrong and the day is done for. (Some days we have reached our limit before 8am and there is no redemption - just surviving). I spend a lot of time calculating and balancing our days and trying to figure out if what we do next will be the tipping point or do we have the strategies to manage. (If she wasn't such an extrovert it would be simpler.) Most of what I do is about planning, strategies, supervision and winging it! So here is my list about 2 year olds. Most parents will relate to some of this, but when you build it together like a jigsaw it becomes clear that my daughter isn't like most 2 year olds. 1. Not all 2 year olds have meltdowns that they pull chunks out their hair, bite their hand until it bleeds and bang their head against walls because they can't cope 2. Not all 2 year old hate transitioning from 1 place to another that it can take days to recover 3. Not all 2 year old are awake 3-4 times a night with medication because their brain isn't wired properly to sleep and the simplest noise or change in environment wakes them for hours. (4 hours of mooing 1 night last week, why mooing???) 4. Not all 2 year olds need routine so much that when you get their snack from a different place to usual they have a complete meltdown (see point 1) 5. Not all 2 year olds love falling so much they would rather throw themselves down the steps of the slide than go down it properly (sadly landing isn't as popular and the NHS is amazing!) 6. Not all 2 year olds will ask for food seconds after a meal or will fill their mouth until they choke or eat until they vomit 7. Not all 2 year olds will hurt themselves, then immediately do it again, and again... 8. Not all 2 year olds have such sensory needs that they put their hands round their neck and squeeze (panics me more than her!) or put their fingers down their throat until they vomit 9. Not all 2 year olds communicate through screaming or one word that could mean anything. (Thankfully she is now making progress with communication but is still very delayed as she is with most of her age appropriate skills.) 10. Not all 2 year olds can repeat the same word for 40 minutes. Not in a "I'm trying to annoy you way" but because they are so fixated on it that they cannot stop repeating it. 11. Not all 2 year olds have to take medication for their bowels because something has not formed correctly during pregnancy. 12. Not all 2 year olds need ear defenders to cope with day to day life -( not that she keeps them on) 13. Not all 2 year olds will eat cat food and polystyrene and pretty much anything they think might be food 14. Not all 2 year olds will get in a car with a stranger because they smiled at them without even a glance at their parent or leave a room because another stranger took her by the hand 15. Not all 2 year olds laugh and smile with everyone they meet then explode the second they are home because really they were being overstimulated but can't let it out until they are home and safe. 16. Not all 2 year olds have to be weighed and measured every few weeks to check their growth or are at risk of microencephaly or have dysmorphic facial features (although thankfully only recognisable to those looking for it) 17. Not all 2 year olds are unable to cope with simple noises like kettles boiling, brushes sweeping, chopping veg or hoovers 18. Not all 2 year olds have such poor special awareness and coordination that simple tasks like getting a spoon in your mouth or arms in your sleeves are so frustrating 19. Not all 2 year olds learn to speak and play by copying but cannot attach the meaning of the word to the object or grasp imaginative play 20. Not all 2 year olds can spend hours doing the same activity without once making eye contact or responding to her name because she is so focused. Yet another day cannot sit still for more than 10 seconds. My daughter is amazing. And the list is just a snapshot of how her life is different through no fault of her own. The good far outweighs the bad and she is flourishing. She is so much a part of me that I can't remember what I did before I had her. But every day is a mathematical battle of keeping her calm, and safe and happy without going too far and having her in a place where her brain cannot cope and she self destructs. FASD is complicated and hard but the successes are amazing. When she signed for the first time (reindeer) or put 2 words together (ducky juice) or finally let me brush her hair (sensory issue) without it becoming a battle of wills I'm so happy and proud because already she is overcoming her battles. But as a parent its sad to see how much harder her life is and how much more she has to cope with. She is a normal, mischievous, hilarious 2 year old on the surface. Underneath she is caring, and musical and lovely but battling against a world that her brain isn't designed for. I was warned to expect an uphill battle. That I was entering a world where other people wouldn't get it. That my child would either be seen as naughty and needing discipline or where I would be seen as a liar because the self destruction is saved for home where she feels safe. FASD isn't easy to explain and never will be. It's not all negative, although I think it often sounds like that. But it is a different kind of parenting. One where you learn to adjust your expectations and rejoice in the small things through the deepening levels of sleep deprivation.




Today's Guest Poster is Claire who is currently a full time parent to Annie, cat feeder and avid tea drinker. Professionally (although taking some time off to parent currently) she has spent her career working with vulnerable and disadvantaged teenagers; Particularly around sex, drugs and social injustice.




If you'd like to contribute a guest post about Adoption; FASD or ADHD to Life with Katie then do get in touch at threebecomefour@gmail.com.

Friday, 25 March 2016

Not All 8 Year old Girls.....


I'm not the first person to write a post on this topic.  The content isn't particularly original. It's a topic that will strike into the heart and frustration of every parent with either an adopted child or one with special needs, or both in our case.

Firstly I still struggle with thinking that Katie has special needs. I'm really not reconciled with her diagnosis of FASD and ADHD yet. I accept the diagnosis academically but am still coming to terms with what it means practically. I suspect I will always be coming to terms with it in one way or another. It seems that every day a little piece sinks in a bit more. For me speaking to other people about what's going on for Katie and at home can help me wrap my head around things. Over the past week or so I have had several conversations with other parents about Katie. They were conversations that were both helpful and frustrating in equal measures though. 

Speaking to the parents of other 8 year old girls has given me some interesting insights. It seems that most 8 year old girls are mouthy, door slammy and generally disrespectful and dismissive of everything their parents say or ask them to do. This is reassuring. It's not just our house that has door protectors over the tops of the doors to prevent them being slammed shut. Other girls are needing deodorant highlighting that our little darlings are starting to go through some pre-puberty changes. That might also explain some of the high octane emotions flying around the rooms.

In many ways our house sounds like every other house with an 8 year old resident so I don't want to overplay the SEN card. In many ways Katie is a typical 8 year old. She has moved on from CBeebies and is now watching programmes like Sam and Cat; Liv and Maddie and Millie In-Between. She wants to be grown up and is soaking up the concepts of puberty in Disney Channel and Nick Jnr programmes. She has ideas of wearing fewer items of clothing to look cool and has a passion, bordering on desperation, for shoes with a heel. The difference is she doesn't always understand what she's watching or follow the storyline properly. She's only just starting to understand that the people in the TV programme are actors portraying a character and that it's not real. Having said that I'm sure a lot of the nuances of programmes I watched as a child went over my head as well. That's why I don't jump up and down about some of the lyrics of songs.  I still remember the day I finally understood what Frankie Goes to Hollywood meant when he sang "Relax".  I still sing the version "Relax, don't do it; when you want to suck a Chewit" so it's hardly surprising it took a while to sink in.

In our house though FASD and ADHD hyperactiveness; inattention; emotional frustration; anger; lack of comprehension; forgetfulness; non compliant and oppositional behaviour; rudeness and aggression add a layer onto these 8 year old normal reactions and behaviours that spiral the house and all its occupants into a fiery pit of frustration and desperation and leave me with a permanent knot of anxiety in my stomach. 

The problem is it's just so hard to explain how intense it can be living in our house. The worry that kicks in from the moment my daughter's eyes open; being constantly ready for battle; having to constantly be one step ahead to try and offset an argument; thinking up creative ways of encouraging calm and compliant behaviour; trying to work out which battles to fight and which to ignore and feeling constantly stressed and on edge; having to go back on anti-depressants to try and calm down the anxiety that makes me feel more Meerkat than human. No matter how I explain it the reaction from each person I've spoken to recently was the ubiquitous "that just sounds like normal 8 year old behaviour" and I'm left feeling frustrated and overly dramatic and even questioning if I'm either imagining the severity of our experiences and simply just a totally ineffectual parent. I agree there is much that is "typical" about Katie's behaviour but equally there is a lot that isn't.



This whole issue frustrates the hell out of me and I end up feeling isolated, stupid and questioning myself. So just for the record here is a little list of the things I don't think all 8 year olds do. Feel free to point out which ones you think I've got wrong because I'd love to be reassured:

1. Not all 8 year olds scream and shout and have endless toddler tantrums.

2. Not all 8 year olds totally ignore everything they are asked to do unless the word "sweets" is involved.

3. Not all 8 year olds have the need to control every aspect of life around them with argumentative and aggressive consequences.

4. Not all 8 year olds bounce around and fidget and fiddle whenever they sit down.

5. Not all 8 year old find it impossible to sit through a meal without getting up and down constantly. 

6. Not all 8 year olds find it impossible to follow more than one instruction at a time.

7. Not all 8 year olds need melatonin to enable them to sleep.

8. Not all 8 year old wash their hands until they are sore (most barely wash them at all).

9. Not all 8 year olds worry incessantly about being sick and the sell by dates of food.

10. Not all 8 year olds get fixated on a topic and ask questions endlessly (for days) on it.

11. Not all 8 year olds are incapable of organising themselves to do anything (except cartwheels).

12. Not all 8 year olds are anxious about starting new work at school because they haven't understood what to do and don't handle transitions very well. 

13. Not all 8 year olds require constant supervision to prevent them searching the cupboards or my handbag for sweets, cakes or lipsticks, despite being told not to do it. 

14. Not all 8 year old will lie about everything.

15. Not all 8 year olds will tell you confabulations where they've become confused about things that have happened or they've been told during their day and think it's happened to them.

16. Not all 8 year olds need a time warning before starting or stopping most things including having a bath or a meal. 

17. Not all 8 year olds will point blank refuse to do anything they've been asked to do. 

18. Not all 8 year olds forget the maths they have learned repeatedly, then remember it another day only to forget it again the next day. 

19. Not all 8 year olds get sensory overload and hyperstimulation from too many things happening in one day and too much going on around them including colours and sounds. 

20. Not all 8 year olds spit in your face when they are angry.

21. Not all 8 year olds punch and kick when they are angry.

22. Not all 8 year olds struggle to spend any time alone.

23. Not all 8 year olds struggle to amuse themselves or access their imagination.

24. Not all 8 year olds are born with a head that is too small. 

25. Not all 8 year olds have had their brain damaged by someone choosing to drink alcohol during their pregnancy. 

These are just a few of the things that my daughter does that other typical 8 year olds do not do. 

No, she is not just like any other typical 8 year old. Sadly I suspect she will never be a "typical" any age and I wish people could understand that. I wish people wouldn't smugly tell me that she's behaved well for them because I know that the effort she needed to use to behave so well means that she will have none left for when she is at home. I'm delighted she has behaved well but that isn't a reflection of our lives. 

It is really helpful for me to hear what other 8 year olds are doing but I wish people wouldn't dismiss what we're all going through as the same as everyone else. 

What are your experiences of 8 year old girls?  Thank you for sharing....








Wednesday, 23 March 2016

Katie's Lego Dream House

Katie and I were delighted to be asked by Ocean Loans to take part in their Lego Dream House competition. Usually Pip is the Lego King in our house (we make lots of "factories").  Up until quite recently Katie showed very little interest in getting involved with our factory making but receiving some Lego friends sparked a bit of interest in her (an interest I had to share one Sunday afternoon as I helped her put it together). Fired up by this success we were up for a little creativity although I was concerned as to whether we could actually make something that wasn't a factory.

When the Lego Creative Building Box and green base plate arrived we pondered what Katie's Dream House might look like. Katie fiddled and played with the Lego but nothing really jumped out at us as an idea.  We built a few different houses but neither of us felt inspired by our creations. I then asked Katie what her Dream House might actually consist of and the idea of a playground started to grow.  

As relative Lego novices we initially tried to build a full house structure but realised we wouldn't have enough Lego or space left to build our dream garden.  We decided to build the front of the house only and have the garden taking up most of the design at the back.


We set to work..........

We argued a bit...............


Katie had ideas that required Mummy to put into action..........


Mummy got quite into this Lego building lark and started to have some fun as well.....

Here is the brief Katie came up with for the design.........

Katie's Dream House would have an adventure playground in the garden.  It HAD to have a swing because swings are Katie's most favourite thing in the world.  As a toddler she would make me push her on the swing for hours at a time.  I had pretty impressive biceps at that point in my life I must admit.  Katie and I both adore zip wires so we needed to create one of those.  Katie was insistent the zip wire had a tyre to sit on so we removed a tyre from a Lego wheel.  Katie and Pip both love being around water so she felt a paddling pool was paramount. We "borrowed" some water from a Lego Friends set we have and Katie added some of her little stones from her collection to create a little beach area.  Finally a see-saw and roundabout were added to the list so 360 degree see-saw was created to act both as a see-saw and as a roundabout.

Here is a step by step photo library of the building of our design....






























Katie was delighted with our finished house.  I'll admit I was too.  It was wonderful to build something other than a "factory" and it opened my eyes a little to what we could create with Lego.  I think we might be creating a few more Dream Homes and some other things we can dream up......





The most fantastic part of making the playground Dream House happened the morning after we made the design.  Katie asked to play with her house.  Pip came along and joined in and I watched their imaginations really fire up as they talked about going on the zip wire and flying through the air on the swings.  They imagined paddling in the paddling pool and playing on the pretend sand.  To see them enjoying our creation together was wonderful.  Katie and I even wondered what our next creation might be and Katie said we might even start our own business selling our designs (only joking Lego - don't worry - your business is safe!).

Katie and I would like to say a big Thank You to Ocean Loans for asking us to be a part of the Dream House fun......  We LOVED it!


Note: We were sent the Lego Creative Building Box and base plate by thinkmoneygroup.com as part of the Lego Dream Houses competition. All words are our own.

Monday, 7 March 2016

Hetty Feather!

http://www.hettyfeatherlive.com/
You know when you do things that you're not sure if they are a good idea or whether saying "No" would be the best option? Well that was my dilemma for Mother's Day this year.  In some ways I couldn't have planned it more ironically if I'd tried. Except I didn't. I didn't twig it was Mother's Day when I booked to go and see the Hetty Feather musical production. Katie saw a poster for it and asked to go. It was only on for two days so I booked it and later realised it was Mother's Day. 

Katie likes watching Hetty Feather on CBBC. I've not read the books but from watching the programme on TV I knew the basic story was about a baby given up to the Foundling Hospital in the 1800's. I knew Hetty went to the countryside to live with a Foster Mother (Peg Cotton) until she was five years old and then moved back to the hospital with her foster brother (Gideon). I know it was written by Jacqueline Wilson and I now know that the books are recommended for 11-15 year olds. The show was deemed suitable for age 7+ so I didn't think it would be a problem, other than knowing the subject matter.

I initially had had concerns about the content on TV due to Katie being adopted but I don't like to put my thoughts in her head or create a drama where there might not be one so instead I watched Katie's reactions to it carefully to gauge if it was effecting her emotional wellbeing. From my observations I don't think she really relates the story to her own situation because it's set so long ago rather like Hetty doesn't link her own fate to that of her older foster sister Martha or foster brother Saul when she lives with Peg. I tend to think programmes like Tracy Beaker and The Dumping Ground are more relevant to life today for her but because she was a very young child in foster care and because her empathy skills are very underdeveloped she doesn't seem to realise that that could have been a depiction of her life had she not been adopted. 

The production of the book was amazing. Such a clever adaptation. The staging was unexpected and and the songs and humour were fantastic. Cast members use ropes and ariel trapeze equipment and ladders to enact elements of the story. The small cast interchanged gender roles making for some very comical moments when they were playing the roles of very young children. It was fast paced, colourful and, for an ex-thespian such as myself, a stage management dream.  I spent the whole programme with a knot in my stomach though.

https://www.londontheatredirect.com/play/1525/Hetty-Feather-tickets.aspx
It was the emotions that the show pulled out in me that gave me that knot and inability to breathe. From the outset the show is in your face about Hetty's desire to find her mum. The emotions I felt as she was left at the Foundling Hospital by her desperate mother almost stopped me breathing, Hetty dreams about her mother constantly and has fantasies about the name she was originally given because the name of Hetty Feather was given to her by the hospital. She's red-headed and feisty and ready to do what it takes to find her mother. Seeing her beautiful hair being cut off was almost heartbreaking because it was all she had in the world. The story really is Orphan Annie meets Oliver Twist. As an adoptive mother I actually found the story quite over-whelming. It fed into my fears of Katie's fantasies about her own birth mother and where those might lead her and the risks to her emotional wellbeing during her life.

I sat with bated breath wondering what Katie was making of the story. Was she relating it to her own life and experiences? Was she following the story? Was she upset? Was it occurring to her that she could just take off in search of her birth mother? I wanted to just walk out of the theatre because I was terrified that she would be devastated by what she was watching whilst equally feeling that it can be good to air feelings and simultaneously berating myself for agreeing to book the tickets for the show.

Other than snuggling into me at times from the next seat Katie showed no outward signs of being bothered by the story. She whispered to me several times that she was hungry. I gave her some gentle kisses on her forehead as we watched. I asked her if she was OK and enjoying the show. A enthusiastic nod of the head followed. 

Of course in true Disney-esque fashion Hetty is reunited with her mother, who is obviously a good and trustworthy person. I think that part bothered me me than anything else. Of course this story is set in the 1800's so children were mostly relinquished due to poverty and being unmarried. But children don't necessarily differentiate in the ways adults are able to. Has Katie come away thinking that a reunion with her birth mother would be so perfect? Would she think her birth mother is able to take care of her? 

http://www.standard.co.uk/goingout/hetty-feather-theatre-review-at-last-a-family-show-that-has-it-all-a2487436.html
I was cautious in the questions I asked on the drive home. Katie seemed happy enough. She asked some questions about the influenza outbreak that was a part of the story and has a sad outcome for one of Hetty's foster brothers (Saul) and and said that a scene where Hetty was telling stories from a police magazine scared her a bit. I asked her what she thought about Hetty's story and I said that life was very hard for Hetty living in the Foundling Hospital. She had a brief conversation about it but said very little more.

After dinner she started being silly; behaving inappropriately and swearing and again I wondered if we were seeing a reaction to the story but later she told me she felt that Pip gets more attention than she does and that's why she was misbehaving. (How quickly they forget who's just spent the whole afternoon on her own with me.) I actually think she was reacting to it being Mother's Day and although I had played down any expectations of the day she had struggled on and off with me having little treats from Daddy despite making me lovely spontaneous cards in the morning.

It's very evident that the show had a profound effect on me. It was very thought provoking and insightful. Whether it was for Katie too remains to be seen.  I suspect it has currently not struck home with her. As noted from the TV programme the comparison to her own life was not made. Katie generally has a difficulty understanding that acting doesn't mean something isn't real and I have a sneaking suspicion that her brain hasn't tried to fathom out any more than that. 

Let's wait and see and hope I'm just doing my usual thing of reading too much into everything.......

http://www.hettyfeatherlive.com/

Thursday, 3 March 2016

Parents Evening!


I wish I could accurately describe the feeling I had in my stomach after going to Katie's parent/teacher meeting. The closest I can come is by saying it's sadness, mixed with pride with a twist of anger that has been shaken and stirred. I don't feel that fully encompasses the anxiety that lurks there as well. It's the realisation that despite putting in sterling effort in class Katie is going to struggle because of FASD. 

As I ponder on that feeling in my stomach I think I can feel anger bubbling away in there as well. Actually I think I can say that I'm furious because this was preventable. Katie shouldn't have been put in this position. She was an innocent baby and is an innocent child. How will she feel about her diagnosis when she is older? 

Katie is a bright girl. She's very switched on, a fact her teacher noted to me. It's a travesty that, due to the choices made by someone else, she possibly only understands every third word said to her. Because her brain was damaged by alcohol it takes her brain longer to join the dots when someone is speaking to her. That means she's often only understanding a third of the information. How confusing must that be?  How much effort does she need to invest to keep up in class. No wonder she's anxious. No wonder when she's given a new task she wants to wash her hands or have a drink or sharpen her pencil. Anything to delay starting a task she doesn't totally understand and have some control over the situation. And how frustrating is it to learn how to do a maths problem one day only to forget it by the next day or after a few weeks, just as the teacher thinks you've finally retained that information? How does it feel when another child teases you for getting a maths problem wrong and tells all your friends? Such a myriad of daily emotions she must be experiencing at a time when she should be care-free and having fun.

In my heart though I feel pride. I'm proud of my daughter for going to school every day and making a big effort to learn. She tries hard and I know she doesn't always want to go to school. I cannot ask for more than that of her. She holds it together at school. I'm proud of her for that as well. That must be so tough for her, I probably don't give her enough credit for that. Who am I kidding, I don't give her enough credit for that mostly because I'm dealing with the fallout from all that effort when she comes home. It's very hard to remember anything clearly when things are being thrown at you or you're being yelled at. I guess she must be fit to burst by the time she leaves school and we really need to find a way of her calming down and letting off steam that she will actually engage in.  Katie has a very high oppositional element to her personality either due to her brain damage or because it's in her nature, or both. This makes life doubly challenging because helping her becomes even more of a challenge.

It would help if we had a clearer picture of her learning ability and I.Q. We need a psychological assessment desperately. We're on the CAMHS waiting list, a place no doubt we'll stay for many months to come. I have requested an Educational Psychology assessment at school and will need to chase that up. I suspect we'll end up paying to have the psychological assessment done privately to speed things up a fact which irritates me intensely. 

We're very lucky that Katie is well supported at school. Her teacher makes an effort to understand her children and I'm fairly confident she has gone off to do more research on FASD after our meeting. It doesn't take away the flat feeling I have though or the anxiety for my daughter's future. Will her teacher next year make the effort to understand her condition? Will she manage ok in a mainstream school as the intensity of the work increases? What will life at home be like as she is faced with higher and harder expectations at school? She's already watching friend after friend get their pen licence. Her writing, whilst quite neat, needs to be spaced out and placed properly on the lines to get her licence. What if she can't though? What if her fine motor skills won't allow that? How will she feel going through her school year not achieving what many others seem to do so effortlessly?

Like many other adopters education is an unknown commodity for Katie, and us as her parents. We don't make the assumptions about the future that many other parents are able to make. Instead we worry and question and second guess and try and read an imaginary crystal ball to see into the future. The future is unclear currently. So much outside of our control will play a role in the outcome. A disinterested or unsupportive teacher who is unable or unwilling to understand a disability hidden inside a beautiful and seemingly normal body could have devastating effects. The move to secondary school with its high expectations for achievement might be too much pressure. So much rests on the psychological profile/assessment so we can gauge Katie's abilities. My sense is that she functions at the higher end of the FASD spectrum but I could be being misled by her excellent communication ability. I hate not knowing. We all have our control dramas and this pushes all my buttons. I need a plan. I need to know which road we're driving along so I know what to prepare for. I don't cope well being on the road without a map. 

Hopefully the map will be forthcoming in the near future and we can plan our route.