A diagnosis…

Once upon a time there was a lady. She was pregnant (again). She had a difficult life, more difficult than we in our lovely middle class lives can imagine. She was stressed. She was having a really challenging time (for a variety of reasons). She didn’t want to acknowledge she was pregnant, because that might lead to interference in her life that she did not want. So she denied she was pregnant. She had a few alcoholic drinks to help her deal with her lot in life (this last bit is assumed, the rest is fact).

There is no joy in hearing that a pediatrician thinks your son has brain damage caused by drinking during pregnancy to go alongside his other issues. And by ‘think’ the comment was, he has Foetal Alcohol Spectrum Disorder (FASD) but she can’t yet formally diagnose it as we are waiting for some cognitive tests, in the absence of any admittance by his birth mother that she drank when she was pregnant. We have been aware of this real possibility for over a year now, but it was still a complete moment of heart ache for him.

So now, our precious boy is deemed to be suffering from complex neurological trauma and FASD with learning difficulties alongside his attachment difficulties. Which doesn’t take away from the amazing boy that he is. He is caring and loving and empathetic. He mostly wants to please. He is trying hard to not upset most people.

He is struggling big time at school, he cannot access what other pupils his age can, so can be upset by comments when he is doing different work. He doesn’t the unspoken rules. He doesn’t know how to play in an appropriate manner. He is strong believer in rules, and therefore will tell over another child when they don’t follow the rules. He wants things to happen his way and doesn’t get that sometimes other children’s ideas might be better.

He likes to know who is in charge, how they make themselves in charge. He needs to be liked by whoever is in charge, because then he will be safe. He spends a lot of time whilst at school making sure that he is ‘safe’, which doesn’t help him academically.

Because so much effort is taken up in being safe at school, he gets really tired. He doesn’t show that effort often at school – although will chew anything that is close to him when he is anxious. He does however, show how much the school day takes out of him when he is at home. We cope often with meltdowns after school. Sometimes they happen in the car, sometimes he manages to wait until we get home.  Sometimes they are short and manageable, sometimes they go on and on and on. Sometimes he just screams, sometimes he aims to hurt.

He needs routine and structure. School holidays are hard. Different is hard. I had plans this holiday to arrange to see some of his school friends, but he is struggling so much.

You cannot know what a child is living with, you cannot know what a family is dealing with.  I am grateful that the majority of his class accept him for who he is. They know he is different, but don’t necessarily worry about the different. I am amazed by the understanding shown by parents. I hope that other people who are living with children who are struggling are surrounding by understanding, because it helps.

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A difficult week…

I meant to write last week about the pleasant week we’d had, but never quite got round to it. This week has been the opposite, which we predicted, but it was as though a switch was pressed on Friday afternoon and this week has been hard.

There came a point this week when I thought this is it, our life with two children with additional needs. Jelly had a speech and language assessment on Tues, where the therapist commented on his low concentration span… I’d not noticed because it is considerably more than Boyo’s was at the same age! I lie, I’d noticed, but his lack of ability to speak appropriately and his frustrated behaviour because of it, is a bigger concern to me.

Boyo has struggling not to argue this week. At times we went down the line of ‘accept or argue’ mostly when we were out, with the knowledge that ‘argue’ meant going home. We have ignored the nonsense. We have asked him to think, to use his thinking head. We have asked him to listen. Not much has worked, and he has had meltdown after meltdown as he has struggled with the lack of arguments, or when needed the instance that he does need to do what we have asked.

We are full on in anxiety city and therefore Boyo is struggling. Because Boyo is struggling, Jelly is struggling. I have been bitten by both of them today (several times) I have been hit and spat at. I have had them sat on opposite sofas in the front room and refused to let them move. They had they iPads and headphones. I sat on the floor between them.

We are two weeks down into a long 6 week holiday. Last week was planned, this week less so, because Boyo has been doing a Tennis Camp each morning. Thankfully the coaches are familiar with him and know that he wobbles. He has chewed the handle on his racket this week to the point it’s had to have a new grip on it. He has also chewed tennis balls!

Next week will be different again. At some point, I have things I must do, my ironing pile is now in two bags. Our paperwork is now into the third box. I have lessons to plan (yippee!) for the new GCSE (double yippee!). But right now the boys need me to be available to them, when they need me, so after full days, I sit in the evenings and think…another day got through.

There came a point this week when I thought this is it, our life with two children with additional needs. But we have got through worse. Better will come. And in the meanwhile…there is always gin!

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Onwards and upwards…towards the holiday!

 

Apparently, I am a poo poo head and I am also stupid. I have been a poo poo head most of the week… with occasional (at least once a day) stupid. I am not looking forward to him learning more interesting words! It will be no surprise to most adopters (& my friends) that this is the result of several days of ‘different’ at school.

However, transition day at school went okay for both boys. Boyo’s teacher (newly qualified) has obviously be told about him and sent home two booklets the Friday prior to transition day…one was photo’s of the new area (Y3&Y4) and one was a booklet all about her.

We arrived in the new (KS2) playground after dropping Jelly off and immediately Boyo grabbed my hand and refused to let go – I couldn’t blame him, the noise of 240 children was immense. When the bell went, we eventually, along with everyone else figured out where to line up and again, he was clinging on. She saw and she asked for him to go to the front of the line! She is making the right moves in my books and I hope it continues. We have a meeting just before the end of term with her, SENCO and present teacher. Things weren’t great afterwards, but no worse than we expected.

Jelly’s also had a transition morning and managed okay. The nursery staff have already been taking him into reception, so the space is familiar. He didn’t hit anyone. He didn’t bite anyone and he didn’t throw any toys (or at least that anyone saw). His teacher has been here to meet him in his own space – he didn’t talk to her to start with, but eventually warmed up a bit. I have to trust things will be okay, but I have warned her I have huge issues with reception as Boyo had such a horrid time and I will do my best not to pass those issues onto Jelly, but I will be in touch at the slightest issue.

So transition day went okay – sports day less so. Jelly did a runner across the school field. In a separate incident he fell over and split his lip. There were photos on FB. There were snotty comments about not been allowed to put photos on FB – and neither of them competed in actual sports day, just the activities in the morning.

I was also caught by the SENCO last week; and I have a bonus meeting with her next week to read through the EHCP paperwork. And to discuss a plan for Jelly. I am officially the Mum with two children with additional needs.

Two weeks left to plan the summer – part of me can’t wait, but part of me is worried that one of my plans (for one day a week) has fallen through.

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Stick it back together…

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This picture is a symbol of our life at the moment. Jelly received a certificate for sitting really still whilst having a hair cut (this is big deal for him). Boyo ripped it up and put it in the bin because he was cross.

For the last few weeks couple of months, life here appears to have lurched from one crisis to another. We can pick it, stick it back together, and something else happens. I can laminate the certificate back together, but tomorrow, or the next day it’ll be something else.

Last week, it was the news our Social Worker hadn’t done what he was meant to do. The fact that Boyo has an NQT for a teacher next year. That Jelly has his best friend in reception with him, but none of his other friends. The confirmation of a diagnosis for Boyo, well in fact 3, 2 definites on paper, one that needs more testing, but paediatrician  said she is sure he has.

The week before, a family wedding to highlight the differences between our boys and other children. And the high level of anxiety surrounding it. And another conversation overheard when someone asked my MIL refuses to admit that there are any differences.

This week, the come down from a 2 1/2hr wait to see paediatrician. The destruction of toys. The idea of transition day and all the other wonderful ‘differences’ that are happening at school at the minute.

No-one is sleeping well. No one is coping well. Himself and I are doing our best, but it doesn’t feel quite good enough at the minute. I don’t dare think about things too deeply, because I just feel overwhelmed. Tomorrow I have to go and see the head of the boy’s school, because I need to know the plans; but I need her to know that at the minute, this is hard; but I need not to cry.  I don’t dare cry, because I might not stop.

I know this is a bad patch, we will get through it. We will stick it back together again. We will manage the meltdowns, the biting, hitting & kicking (from both of them of course). We will limp along, until we realise that things are calmer. But right now, this is hard.

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Education thinking…as a teacher & adoptive parent

A few weeks ago I saw a statistic that bothers me… at the end of KS2 75% of pupils ‘pass’ (whatever that means in today’s education world). It has long been recognized that looked after children don’t do as well – 46% of them ‘pass’. Until very recently the data simply hasn’t been available for previously looked after children, it is now – 49%. Which as a mere science teacher, looks closer to 46% than 75%.
 
There were many things mentioned in the Queen’s speech last week; but one that most people will have ignored is one that effects previously looked after children. Virtual School Head’s roles will extend to cover them. And schools should have a designated teacher for them, much as they do for looked after children. The school will have a duty of care to ensure that previously looked after children have their needs met.
 
I work at a secondary school, where there are 6 (I am told) adopted children – I know who 3 of them are. This worries me… how can I help them to achieve; how can I understand them if I don’t know who they are? I make sure each year that D’s teachers are aware of him (to be fair the entire school seems to be aware of him) and his background, I will do the same for H. What happens at secondary school; should the information be shared more?
We are constantly been reminded to consider our pupil premium pupils, but there is no differentiation between the different causes of PP/PP+. If we should be as concerned about the pupils who were previously looked after as the data suggests we should be; should we be more aware?
There is a lot of debate around at the minute, regarding adopted children and education, and generally about education. And I think the discussion is important, but there has to be learning as well as discussion. The data is starting to exist, we should react according to the data that is there. More data will be added over the years, it would be good to see that these early feelings about the information can be changed. That 49% is starting point, from where things will improve.
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Happy birthday Jelly

Small dude (aka Jelly) turned 4 today and despite a rocky start and a difficult end it hasn’t been a bad day. We made the decision at breakfast time to abandon our previous plans as Boyo was not coping and went out to a farm for most of the day. They both enjoyed it’s; feeding calves and lambs, fussing over Guinea pigs & rabbits, a tractor ride. All things to warm a small boy’s (or even two) heart.

Dear Jelly

Now you are 4. 

I adore the fact that each morning you shout hello to everyone from your bedroom, we are all named and once you are through us you shout to your best friend (she can’t hear you, but you try). You greet each day with joy and excitement. I love the way that whatever I say we are doing today, you will usually shout ‘Yay’ with happiness. You are also known for jumping up and down with excitement. 

You go to school nursery happily, and day nursery equally happily. You like it best when I take you to school and pick you up, but you always say ‘Yay’ when I tell you L is picking you up. Although you aren’t the best behaved child and you are stubborn as anything your teachers and carers seem to have a soft spot for you.  When you started school you only wanted to play with A and T, now you tell me all the different children you play with, although they are still your best friends. 

You get frustrated when other children don’t understand you. You are stubborn beyond belief, and I know stubborn. You get cross and shout and scream. You have bitten at school, but this is getting less as is the pushing and shoving. When you don’t like what you are been told, you will wander off into a corner and tell me you are ‘sulking’. You dislike ‘no’ with all the passion of a 4 year old. 

Your favourite question is always ‘where’s Boyo?’ Usually followed with ‘at school?’. You love having books read to you, and playing with cars and trains. You often build ramps in your bedroom for your cars. You like watching Paw Patrol, Peter Rabbit and Mr Tumble. You enjoy being outside, but mostly so you can play with Boyo. You love the trampoline and swings. You aren’t that keen on swimming, but we will keep on going. 

I haven’t fed you anything that you have refused to eat, although give a choice you’d eat meat above all things. You,refuse to,drink water (we will have to work on this) but like milk  and squash. Fruit juice and too much fruit doesn’t agree with your insides. 

You can get yourself dressed, although often it is easier for me to get you dressed with time pressures. You, too often decide you need move that car, or get that teddy. 

You have a zest for life. Each day has something new to discover. You have recently improved your language and speaking skills with a dramatic jump forward. You now talk in proper sentences, although sometimes with a pause in the middle. We often ask you to slow down as your mind is whirling, faster than your mouth can cope with.

Gorgeous boy, we love you. We talk about you birth mum & dad and your birth siblings. It breaks my heart that you don’t get to see them, but know that we are always open to seeing them, so if the opportunity arises we will. 

Happy, happy birthday and may this year bring more new things to enjoy and try… 

Love Mummy & Daddy

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When is okay, not okay?

When Boyo’s teacher asks him whether he understands a task, he will always say yes. 

When someone asks him if he is okay, he will always say yes.

When you ask a child who doesn’t feel safe, any question, they will generally respond with an answer to please you.

That seems simple enough to understand doesn’t it? But apparently it’s not. Once again, Boyo’s teacher has failed to grasp that him saying he is okay, does not mean he actually is.

It’s Sats time at school. And whilst he isn’t actually doing the Sats, he is been affected by them. He has been working with his 1 to 1, but he has been in the library, in the ICT room, in the science room. Anywhere, but where he usually is. But if can’t be bothering him, because she has checked everyday to make sure that he is okay and that he understands.

So it can’t be that, that is making him not want to go to school this week. It can’t be that, which is making him wobbly afterschool. It can’t be that, which made my walk to school more interesting this morning, as he was attempting to bite me, whilst I had to hold his hand. 

There is a massive disconnect here. I cannot get his teacher to understand that when he says he is okay, it doesn’t mean he is. I can’t get her to understand that school is scary…because he seems fine there. I can’t get her to write in his book either before or after a change so I can either work with him to prepare him, or at least know what is causing the issue. The response I get is that she has asked him and he is okay. 

I know that this isn’t limited to Boyo and his school. I know others have the same issue. But surely it’s not hard if parents are saying ‘Yes, we know he says he is fine, but he isn’t’ to listen and try to help. 

I know tomorrow that I will have the same issues on the way to school. I know that tomorrow afterschool, I will have a wobbly child. I am tired of trying to get his teacher to understand, that because he seems okay in school, it doesn’t mean that he is. I know these things can’t be helped, but work with us, please, just let us know as his parents so we can help him.  I am not asking for much, but help us help him. 

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