A little bit of magic…

This week we had a little bit of magic. A chance to relax. A chance to speak to other families living in similar circumstances. A chance to be.

We were lucky enough to spend this week at La Rosa Campsite, hosted by The Open Nest. The boys had 3 lovely days playing in an environment that they know with people they enjoy being around. And we got to spend 3 days being ‘us’ and not having to constantly worry about what the boys were doing/or going to do next.

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The boys enjoyed having more people to play with. They enjoyed the chance to be outside for the day. Even on the wet day (by which I mean it rained, all day unceasingly); they obviously still had lots of fun outside (there was lots of sliding on the mud in the evening, not all accidently). Jelly loves the trains that it is possible to see and whenever we go will speed across the yard to see them whenever he hears them. Boyo got to do things that he enjoyed as well.

For us; hubby and me; it is a special time as well. It is rare we are together for an extended time without the boys, unless it is a for a specific reason. We had 3 days in which to relax and chat and spend time with each other and other people.

Most of us arrived on the first evening and started conversations. For us, there were people we had met before so it was a chance to renew friendships as well as meet new people. We caught up with what had gone on for other people over the year and also heard new stories. We had the chance to sit and relax with sandwiches and cakes in the magic of the big top. Hubby and I spent a long time catching up with someone after most other people had gone that first afternoon.

The second day we relaxed some more. We decided to spend some time away from camp and meandered into Whitby – by ourselves. We could go into whatever shop took our fancy and spend time looking at things, not asking the boys not to touch or leaving before something was broken. We had a lovely lunch, relaxed and enjoyed each other’s company. There was plenty of time on camp to chat to other parents. On the last day, we chatted some more; some of us went to the pub. We relaxed, we shared more stories.

The magic comes because it is possible to relax. We understand each other and the behaviour that our children show. In an evening, it was safe to let Boyo wander all over site. He took one of our walkie talkies so that I could check in with him and he could check in with me. But he enjoyed the freedom that he doesn’t normally get. Even on the last evening we were there, he managed to spend time playing with other children, long past the time he would normally be social.

And for us. The chance to relax is an immeasurable treat. There is nothing to do. No phone signal. No wifi. No contact with the outside world. Only relax, chat, read and sleep. And that is what we did. And after the children went to bed, we were able to enjoy more social time, sitting round a fire, talking and enjoying company.
IMG_20170810_220007809We always breathe deeply as we approach the drive down. We start to relax as we make that turning. But it is special to share that time with other people who get it and have different experiences and different ideas to take and try.

I’ve already said thank you many times. But it truly is an amazing experience and we come away sad, but revived and able to think forward again. So I’m going to say it again. Thank you to the wonderful people who give us chance to breathe and the chance to have a holiday as a family that we all love and enjoy.

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Playdate for Jelly

As always when things get tougher than usual, I forget to blog. The tougher than normal in this case was due partially to work and partially with the boys. But we made it to the school holidays and we have coped so far and have much glorious-ness to look forward to next week.

But I wanted today to talk about my littlest. Boyo gets so much, as a family we meet his needs because if his needs aren’t met we are all made very aware. Jelly gets lots of lovely things and does many lovely things, but they are still all based around Boyo.

Last Monday (first day of the school holidays) we went out for the day, because I knew we had to go out; but we went somewhere that meant Jelly could see pigs and goats and donkeys and lots and lots of birds alongside the guinea pigs and rabbits. He had a lovely time and really enjoyed himself but actually he needed a day at home just to play.

This week Boyo has a sporting activity every day. So we have planned our week around it. But on Monday, Jelly suddenly said ‘I want girl’ to come and play. Girl is the daughter of a good friend of mine, and is in his class at school. The request came unprompted and out of the blue. I promised him I would arrange it & when we saw Girl’s mum on Tues he reminded me I’d said this. So we arranged and today Girl came round to play once Boyo was at sporting activity.

Jelly and Girl had a lovely time. They played together, they listened to each other and played. They did something that Jelly wanted to do, then something that Girl wanted to do. I had baked some buns last night, so we decorated those. We did make and do. We played with play dough. And we built marble run after marble run, sighing and laughing when it feel over.

He was over joyed to have her come round and play. I had no concerns; I told her mum that I’d return her at some point before collecting Boyo. It was a free and easy arrangement, because I didn’t know how well Jelly would cope. He coped really well; and was happy to do what she wanted as well as want he wanted.

It was the first time Jelly has had a friend round without their parent’s as well. And it was a success!

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Now you are 5…

Happy 5th birthday little man… well happy birthday for tomorrow anyway!

You are definitely a morning person – far more than anyone else in this house. You wake up (we now consider 6 am as a good start to the day) full of joy and ready to greet the day. You smile, you enjoy life, although are prone to have toddler like tantrums (especially when tired). You tire yourself out and struggle to stay awake beyond 7 p.m.

You are happiest when we are together as a family. You miss your big brother when he isn’t here; even though when he is elsewhere you manage to play and do what you want. You love your farm; and will play for hours with it. You still like to play with the trains. Even better if you can mix the two things together. You use your imagination in your play.

You enjoy being outside, but not in such a frantic manner as your big brother. You enjoy sitting and playing with water, or digging in the mud kitchen. You are happy to run around, but don’t care to play football, cricket, tennis or rounders and are more than likely to run off with a ball than join in. You love being allowed to paint (with water) the side of the garage and we regularly have chalk roads on the drive.

You can walk several miles now, especially when you are wearing supportive boots. You have started to understand how to play with the dog and when we recently got gerbils you were able to understand how to care for them.

You enjoy music, in the same way I do. You dance your way through life with singing thrown in. This morning we were greeted with a rendition of ‘Don’t stop me now’ sung word perfectly for about 30 seconds. You enjoy all music in it’s many and varied forms and I imagine a future filled with many concerts. Your favourite song this year is ‘We are Young’ which if you understood the words you would realise is utterly inappropriate for 5 years old to listen to, but as you love the chorus and the beat, we don’t worry too much.

You ask to watch Bob the builder and Fireman Sam more than anything else. Although you like most children’s TV. We limit how much screen time you have, as you would spend far more time than you should watching if you could.

I’m going to gloss over your first 2 1/2 terms at school and I can’t imagine that the lack of routine that is going to be the last half term is going to improve the situation. It has been a steep learning curve for everyone; me, your teachers (and other members of staff), and you. Much has gone wrong, although I am informed that the staff actually like you, no matter how much they simply don’t get you. You do love the school guinea pigs and frequently say you want some of your own (tough, Daddy is allergic and we have  terrier dog). You love seeing your big brother at school and always tell me when you see your cousin as well.

This year we have seen some real leaps in your development. From starting school with limited language we recently had an assessment showing that you had developed to 3 or 4 word phrases, when at ease. Academically you are far behind your peers, but it is okay because you are making progress.

Yesterday you had a party with 6 of your friends from school and one of our adoptive friends. You had an amazing time playing with them and it was lovely to see you with your friends. I enjoyed seeing you play with the girl you call your best friend and how she interacts with you, and the gentle guidance she gave to someone else when talking to you. It was good to see you engage with the different activities that were there and see how much you liked them.

You bring us joy and laughter, alongside the tantrums and tears. Life isn’t easy; but you see the best in it and run full on into the next adventure.

Happy birthday ‘pie. We love you more than you can imagine.

 

‘Tonight, we are young
So let’s set the world on fire
We can burn brighter than the sun’

We are Young – Fun. 

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A plea for understanding – from the mum of ‘that’ child…

I have two boys, they are very different; in many, many ways. The one who causes me most problems behaviourally at home, and I mean serious issues, is generally compliment at school. My other one, is just the same, no matter where he is.

It has become more apparent recently that Jelly is struggling massively at school. He has few friends and no social skills to make new ones. So when something goes wrong, he is left alone and feeling sad. He has a reputation as a ‘naughty’ child and parents don’t want their child to mix with the naughty child.

And part of me understands. I mean why would you want your child to mix with the one who still bites and hits? Why would you want your child to mix with the one who can’t sit still? Or stand in a line? Or who gets cross and draws on other children’s work or even rips it up? Who shouts out? I get it.

But I’d like to ask you; before you make that judgement, try to understand, try to discover why. I am not making excuses. I am not sharing his story, but for my little boy there are reasons for how he acts.

He has had significant trauma in his life, he is very stuck in ‘fight mode’ if you know anything about fight, flight, freeze.

He is developmentally delayed by about 2 years.

He has learning difficulties.

He has sensory processing problems.

His speech is still significantly delayed.

He has fine and gross motor skill issues.

He has hypermobile joints

When all that is put together, imagine how it feels to be in a (very) noisy classroom environment, unable to communicate, not having a place of safety, not understanding the social skills needed (developmental delay, think back to your child at 3). But he is been asked to do the same as your child at 5.

He physically finds it hard to sit on a chair. He physically finds it hard to sit still. He physically finds it challenging to be a line, he hasn’t got the core strength when there are others pushing and barging. He can’t tell another child he needs space, that everything is too noisy, too busy. So he pushes, he fights for his space, and sometimes other children get hurt.

Physically he doesn’t know where his body is. He has to see his feet to know where they are, or feel them touch something different. He needs constant feedback from the environment; sometimes he moves his hands or feet and accidentally hurts someone else in an attempt to ‘be’.

He can’t tell an adult when someone hurts him, he can only react. He is struggling to get understanding from his class teacher. She thinks shaming him will help, like he chooses this behaviour. He can’t tell someone he is cross because they have just achieved in 2mins what he has spent 60 attempting.

He can’t tell his peers that when he is at school he is terrified that he might not see me or his dad again. He can’t tell them how much he needs contact to know he exists. He can’t explain that toy pig he no longer brings to school, was a link so he knew he was coming home again.

So when your child comes home to tell you about this, or that, that the ‘naughty’ child has done, try to understand that there maybe a little more to the story. Help your child understand that some children are different and possibly they aren’t naughty but instead struggling to cope in an environment that simply doesn’t fit them.

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School issues – again

This year has mostly been about Boyo and the big achievements he is making and the paperwork we are making. FASD diagnosis. EHCP. Sensory work.

We haven’t forgotten Jelly; but around Christmas, I threw my hands up in disgust at the SENCO and shrugged thinking Y1 will be different. There are so many things that they are not getting in reception and even the SENCO can’t see the sense in what they are doing; but without a formal document or diagnosis and no money for real support we have felt lost.

I went with Jelly and the class TA to an attention and listening group provided by speech and language. I stated that I wasn’t worried about his attention, but his speech. School insist that his lack of attention is a problem (remember he is developmentally delayed and functioning as 3 year old now). Speech and language said after 3 sessions that his attention is fine. I suggested perhaps the environment at school doesn’t suit him, however they still insist that attention is his biggest problem.

I still insist his developmentally delay is his biggest issue.

We go round in circles. He does something. The class teacher tells me he has been naughty and what he has done and I suggest a reason for the behaviour. He does something (sometimes different, sometimes a repeat behaviour); the teacher tells me what he has done, and I suggest a reason behind the behaviour. I have sat in a meeting with the SENCO and teacher and discussed behaviour as language. I have sat in a meeting with the head and teacher and discussed behaviour as language. We have talked about trauma, attachment and other related issues. He does something; the class teacher tells me he has been naughty and I suggest a reason for the behaviour.

This week she called me into school on Tues to try to make Jelly tell me what he had done. I object (& vocalised these objections to SENCO) to this shaming of him and asked a child who hasn’t got the language to explain to explain to me. He just hid his head in my arms and refused to talk or look at teacher.

He had a school trip on my working day. My friend went as her daughter is in the same class but she went as she knew I couldn’t. The comment I had back today was how fantastic she was with him. She just did what was needed. She is horrified by the lack of understanding of him by the staff.

Her comments back up what I’ve been saying. He was told off for waving his hands around… he uses them for talking as his speech is limited. He was told off for scraping gravel, which she saw as a sensory thing. He was told off for holding onto a railing – her response was he needed to know where he was. SENCO suggested months ago he went at back of all lines – yesterday friend had her group at back to help him and was told that another group was supposed to be at the back. During a talk she realised he couldn’t sit on the seat, so moved him to her lap, where he pulled his knees up into foetal position and she held him to provide feedback. Teacher said, I said he’d be okay, he likes animals.

I am so cross; it doesn’t matter who says what to teacher, she plainly knows best. I am so frustrated because he just keeps getting into trouble, where if they bothered to read him, they would know what his triggers were and what his tells are. He isn’t actually hard to read.

I asked today for a(nother) meeting with the SENCO. We agreed last year we would try to talk about one boy at a meeting. Today was Boyo’s turn. I have to hope that next year when we move to Y1 that we have a more supportive teacher. I do know he will have a TA as that was one of the reason’s I agreed to him moving up. We have also already discussed a chair with arms for him.

It is hard, because I think the school is amazing. The SENCO is amazing. The head always takes time to talk to me when I want it. Some teachers are fantastic. Most are adequate. But we seem to have had a bad time in reception for both boys, which means they start y1 disliking school and it takes a lot to get over that.

I have to hope that Y1 turns things around for Jelly and that things start to improve and there is a greater understanding of him.

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Making sense of more paperwork

I don’t think I expected the amount of paperwork that having two adopted children would bring. Possibly it’s because they both have additional needs; but we have an awful lot of paperwork from the last 6 months alone.

Today we got a hefty piece of paperwork; extremely well written and well evidenced paperwork, but it contains 12 pages of analysis and a variety of different result grids. It is one of the most important bits of paperwork we’ve had and I know in future it will be pulled out on many occasions; following the meeting where we and the SENCO were given the document the SENCO basically said that we need to have an interim EHCP review to add the extra information. But I need to think about it a bit; hence this post.

The document basically concludes quite starkly that Boyo is neurodevelopmentally compromised because of a foetal alcohol spectrum disorder. The evidence is laid out in black and white; which gives some incredibly useful pointers for us and school (& importantly future schools).

It starts by looking at the cognitive assessment that was carried out. It looked at different areas including general cognitive ability, verbal ability, spatial ability and non-verbal reasoning. There were no real shocks with most of this; we knew his cognitive ability is on the low side. We knew his verbal ability is higher than the rest of his ability.

There was point at which the SENCO went ‘oh’ and ‘that makes sense’. There is a test of auditory working memory; where he scored with an age equivalent score of less than a 5 year old. His percentile on this test is terrifying low, basically if you ask/tell him to do something, he probably won’t remember what he has to do. He is much better when he is shown.

The psychologist who produced this report has developed over 30 years his own questionnaire that looks at the profile of the child. It looks at 5 different areas; fluency of communication, attention and organisation, flexibility and set shifting, time and consequences and unevenness and bias in cognitive ability. In all the areas school and us scored him very likely and possibly. It will probably be no surprise that the two areas that were scored as very likely by both us and school were attention and organisation and time and consequences.

There is also a section on the Strengths and Difficulties Questionnaire (SDQ) which is  a standard test used for other diagnosis as well. The key aspects from this are; that Boyo is seen by us and school as troubled by anxiety to a degree that would apply to less than 1% of his peers. Also that used as measure of inattention he was at the extreme end of the scale for hyperactivity.

There is a finally a section about developmental trauma. We all acknowledge (including the psychologist) that Boyo’s developmental trauma is having a massive impact on him, probably more than the FASD. The section talks about attachment and intersubjectivity. It explains why there is compliance at school and not at home.

Following all that there is a summary; in that he has a somewhat spiky profile, but not in the way that a typical FASD child might have. This could be due to general learning difficulties. There is a real identification that he is a visual learner. He has executive functioning deficits. He is very anxious and managing the anxiety can cause issues with learning.

There is mention of medication for reducing anxiety, but that is for future not now. We have a recommendation of Elvanse, but at the moment it is not something that we want to consider. Interesting we talked about melatonin; but he thought it actually wouldn’t help at the minute as Boyo has no real issues falling asleep (other than anxiety and needing one of us to stay with him); the problem is staying asleep.

We were told last year verbally that he was on the FASD spectrum. Today we received written confirmation of it. I am sad for him in the future, but equally very glad that we have the evidence.

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The start of something…

Last summer I spent a lot of time talking to adoptive mums in our weekly school holiday park meet ups. This shouldn’t shock anyone who actually knows me; but several new ideas were dreamt up. For 5 years now we have met in school holidays in local parks, with a few extra bigger events thrown in; but there was discussion about how else we could spend time together.

A variety of ideas were discussed some of which will come to nothing, whilst others are regularly discussed at our coffee chats. Some other people have taken on, whilst there were two that I agreed to attempt to sort. One is still in the planning stage but the other one came about last Saturday.

A very small group of 4 families (the first weekend of a school holiday didn’t help us here) met up at a local outdoor spot and went for a walk. These are families I have known since shortly after Boyo was placed; and obviously the children have known each other this long. It felt like an amazingly familiar group of people. Between us we had 8 children (although the eldest is now 15), 3 dads and 3 mums (& 4 dogs). It actually was a good size group because as we walked we could talk.

Most of the children were bunched into a pack together, although sometimes some lagged behind and some ran in front. But the adults got to chat, about adoption, about family things, about life. It was a pleasant way to spend a couple of hours and we ended at a playground, so the children could play some more.

I am already planning a couple more walks in different locations, with different walks to do. The spot that we were in this last weekend has a variety of walks around it. There are also many other lovely spots to walk.

#glowmo Boyo managed to let other’s throw our dog’s ball. And the friendships that exist and continue to flourish bring joy to my heart.

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