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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Day 3 of the school holidays…

It’s utterly possible it’s nearly a month since I last posted, having promised myself I would do better. However, this last weekend himself and I decided that next year we just brace from start of Dec until the end of March. If we know it’s going to be tough (to be fair we knew) and plan for tough, it’s possible that it’ll be manageable.

Passing his birthday and mothers day, with a significant improvement in the weather has seen a vast improvement in the bad things, meltdowns, rages and hurting.

Of course, at the weekend when speaking to a couple of adoptive mums (this is another post) I foolishly said that at the minute Jelly was causing me more bother than Boyo. Today was the first solo day (of many) of the Easter holidays… I’m not sure I need to say more than…

 

I had to stop the car on the way back from the garden centre.

One of the boys and me walked home from my mum’s house, whilst the other one stayed and played with Granny as the car was no longer a safe option.

 

 

So now I am re-evaluating my plans for the rest of the week – because I am too tired to drive with things being thrown and hurting going on. Hopefully our mornings will be okay as he is going to tennis (10mins in the car each way), but I had hoped we could go and see a friend one afternoon. It’s okay walking from my mum’s, she only lives a mile away. My friend lives on the other side of the city.

I know it is partly a change in routine. I know it’s partly because I have changed my tack with him and he is really spoiling for fight. I know it’s because he absolutely knows which button to press (hurting his brother). I know it’s partly because it’s my mum’s birthday tomorrow.

Knowing this doesn’t always help; I still get hurt, Jelly still gets hurt. I can cope better with me getting hurt – hence the walking home. I struggle with Jelly getting hurt.

 

 

#glowmo watching Jelly play in the backgarden un-interrupted, just pottering in a busy manner.

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6 years ago…

6 years ago today we were having our last child free evening.

6 years ago we thought we knew.

6 years ago we thought we understood.

6 years ago we thought we’d be some of the lucky few with a seemingly unaffected child.

6 years ago we slept.

6 years ago trauma was a stranger.

6 years ago we’d barely thought about FASD – we did go to an evening training on it.

6 years ago we’d not thought much about CPV.

6 years ago we didn’t know how much rage a small body can hold.

6 years ago we didn’t understand the difference between a meltdown and a tantrum.

6 years ago we’d read lots, but not appreciated what it meant.

6 years ago I didn’t know how much we would have to fight to get support for our boy(s).

6 years ago I didn’t know some of my now closest friends.

6 years ago tomorrow we moved a boy and changed his world.

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6 years…

6 years ago we were coming to the end of introductions; I was just reflecting on that time. Life is not what we though it would be; but in some respects it is better. We would not be without the boys however, there are days when I wish it was easier.

I was trying to explain this morning how challenging Boyo finds this time of year. There are a lot of big emotions surrounding this time; but most people cannot appreciate that.

Just before he moved in with us, at the end of introductions (6 years ago today infact), Boyo’s foster parents threw him a big leaving/birthday party. This left him with an immense fear of parties. We spent years coaxing him in to them as he’d get to the entrance and stop.

What’s more it means that his moving in date is ingrained with his birthday.

We have had a weekend full of noise, lots of screaming and shouting and general talking. We have seen attempts to hurt everyone else in the house; and as usual I have taken the brunt of it, because it’s better he hurts me (or hubby) than Jelly. There have been meltdowns over the slightest thing. There has been sitting in doorways (me) whilst he rages. Constant refusals, the trying to fight has been relentless.

This week will be tough; we know that. But this will come to an end. Just as today when I was walking in the sunshine I could think spring is coming; I know that our families spring will come. That sometime towards the end of this month Boyo will find his way to feeling more regulated. It helps that spring is coming, we can be out after school as it’s no longer dark; he can burn off some of that energy that he carries with him. Spring will come, but first we have to finish this most challenging of times.

 

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