Support

With our children we all hope once we have a diagnosis that we might finally have some help and support, but is this the case or just a nice dream?

 

We are all told or notice that our child is different to other children of the same age, whether it be lack of eye contact, no social interaction, sensory overload and much more. We all follow the same path to be diagnosed which for most is a very long and hard road and being passed around to too many medical professions, if you one of the lucky ones then sometimes your diagnosis is an easy one. But then comes the hard part.

 

 

We got our Asperger’s diagnosis first but the doctor thought Oliver might have ADHD as well so we went down the road of more appointments and assessments and then came the diagnosis of ADHD that was more of a shock for me, as it was something that had never been discussed as a problem Oliver might have, looking back all the signs where there but I didn’t know enough about it, Asperger’s I had because it has been mentioned to us and also once it was mentions I did the research.

 

Once you have the diagnosis what do you do, where do you turn too ? I remember getting Oliver’s and feeling hopeful we might start getting support and the statement school where going for but how wrong was I. We got ours and then the Educational Psychologist did an IQ test on Oliver and he came out average so they said that we couldn’t go for a statement and that he didn’t need a statement but he was behind and needed help in other areas, but school supported that, and we had to agree. Oliver was behind in everything but once we started medication with Oliver his school work improved because he was now able focus for longer this wasn’t a short process but over time it helped. Even today he still has major problems and needs a lot of support but he is doing OK.

 

How many of you have thought or been told you child needed a statement to never get one for some silly reason? How many of you have a school that doesn’t understand your child’s needs? Is there anyone other than you as a parent who understand your child’s needs?

 

Once we got our Asperger’s syndrome diagnosis we where told that a Autism Special Teacher would be going into school to help support Oliver, but this would only be once every 6 weeks, if Oliver had, had a statement this would have been every two weeks. This support is good but how good can it be once every 6 weeks or so and how long are they in school for that visit? You hope once you have a diagnosis that things will fall into place that school understand Autism and that they know your child so they are able to support them. I am grateful that this special needs teacher goes into school and can give Oliver support for however long or short, anything is better than nothing and he seems to like this teacher. She helps him with social skills which is a key for our children.

 

Other than this support there is no other support, your special needs teacher run an Autism course which I have to say I found very helpful in understanding a little more but once this course is complete there is no other support.

 

I have found parent support groups helpful. Berkshire Autistic Society run a parents support group once a month which is great but there needs to be more, I haven’t found any support for ADHD, with this day and age and how many children have these condition why is there a lack of knowledge and support?

 

It seems us parents only have each other to turn too. Coffee mornings are great and support groups on Facebook where you have a chance to chat to unload and too just talk and have someone not judging you and understanding you is a massive help.

 

As parents stay strong you all do an amazing job x

 

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Support Group

Hello

 

I have created a group of Facebook call :

 

ASPERGER’S AND ADHD

 

To help support other families to share our stories and experinces please feel free to join and share and support.

 

Thank you

Siblings

With our children and their needs most of our time is spent focusing on them, their condition and the problems that come with it. We often can forget about our other children, or do we forget or just don’t have time?

 

Our children with special needs can and do take up so much time, getting them ready for things, dealing with meltdowns, exercises we might have to do with them, hospital appointments, the list goes on. For their sibling this must look like they are the favourite for the amount of time we spend with them.

 

How do you let a sibling know this isn’t the case and that you love them just as much and how do you help them understand their siblings condition and that the things they say and do they don’t always mean it?

 

Oliver and his sister Rachel can have the ups and downs, at the moment they are having a up moment playing together on their Ipads and Minecraft. BUT I am sure as soon as Oliver gets bored he will just up and leave with out explaining anything to Rachel, leaving her upset and wondering why he has gone off and what she did wrong. I can’t tell you how many times a day you have to deal with this, explaining the same thing over and over again to Rachel that Oliver will just get up and walk away, that she hasn’t done anything wrong and that he needs a little time to himself. But on the other hand I have the same conversation with Oliver every time asking him to tell Rachel that he no longer wants to play and that he will be leaving.

 

How much can a sibling understand of these conditions with out having them, how much can you expect them to understand when there are days as an adult that you don’t understand.

 

Rachel being the older of the two can do what all older sisters do boss about, change a game or game rules at short notice, cramp too much information into one game. To her there is nothing wrong with this and like her friends changing game rules or the game while playing they can easily adapt to the change but a child with ASD can’t 😦 They don’t understand why the game has change or why the rules have changed and this is very hard to explain to Rachel that she can’t do this and this is why some times Oliver has gone off. They best times they play together are the simple games where both know the rules and the rules can’t be changed.

 

He has be overloaded with too much information on the changes and also the change itself when he was quite happy with the old way. It is hard for Rachel to understand (she understands some times) that Oliver can’t be overloaded with information, things can’t change to quickly.

 

The worse times seem to be after school, there will always be a argument and meltdowns, Oliver will have struggled while he has been at school, and when he comes home you need to give him time to relax go into his own world and calm down from being at school. Rachel will say a small thing and Oliver can kick off and Rachel will be left wondering what she has done wrong. Or homework she will think she is helping him and she is but some times she will cramp too much information at him causing him to not understand and go into meltdown leaving me to get angry that I have a meltdown for no reason.

 

Does the sibling get the blame for meltdowns some of the time, do you take it out on the sibling leaving them feeling worse? One thing I have learnt to do is talk to Rachel to hear her side leaving Oliver to calm down and them go to talk to Oliver about what happened and then go back to each of them and explain what they did wrong without shouting and being angry for them to try and understand the situation.

 

Also Rachel has come to some hospital appointments, Oliver hasn’t always liked this but it has help her to know what happens at them, that they aren’t fun and Oliver is having fun while she is at school.

 

I think with a sibling constant explaining and repeating yourself is always going on and to include them in as much as you can and if at all possible get them to help with a situation. This has worked for us and also planning and spending one on one time with the sibling, Rachel loves this enabling her to do things she likes to do without Oliver complaining.

 

Yet with all this going on, at school Rachel is the one person Oliver trust and he will go and find her on a lunch if he has a problem and she will help him sort it out also she will look out for him in the playground and make sure he is ok, she doesn’t always go up to him, but she is there and she will report back to me if she things there is a problem. So outside of home when no one is there to look after Oliver Rachel will. But thankfully at home mum and dad are on hand so she can go back to being the older sibling. x

 

 

Holidays. and No Meds.

Week one is down of the Easter Holidays, I think it has gone well. Oliver is much more relaxed this holiday and some days he has asked not to have his meds, which I did agree too and all has seemed to have gone well, he didn’t focus on anything and moved from activity to activity quite a lot, and to others this could have annoyed them but it didn’t bother me or Oliver I knew the reason why and was happy he was happy and there is times when he has to deal with his condition without having meds, he can’t have them 24 hours a day. We didn’t have many meltdown either which has been great.

 

Also by not giving him meds, it gives Oliver a chance to deal with his condition and learn to cope with the symptoms and emotions that come with it (Sounds heartless I know) but I don’t want Oliver to always have his meds to deal with his condition, and shut it out, and also as the meds, suppress his appetite by no meds it gives him a chance to eat and gain so much needed weight, and eat me out of house and home lol.

 

I know there are some children that needs meds all the time otherwise they don’t cope and I am not against that, but as Oliver grows up he needs to learn and understand his conditions and he has to be the one in control of them, learning the times he needs meds, and what feelings come with things, One thing I wish I could understand and help him with but is something I will never be able to understand, only understand how I see it not him.

 

As a child grows up you need to begin to let go a little but still help and support and I would never allow Oliver to do something that would cause him distress and harm.

 

Even tho last week was quite chilled this week is starting on a different foot, Oliver is either coming down with an illness or he is beginning to fear the return to school. Such a shame if this is the case as he still has a week to enjoy but for our children the fear of school can cause us massive problems. It can ruin a day out, holidays from start to finish as the child knows they have time off but they have to go back to school at some point or it can be the other way around, the no routine and routine change from the no longer being at school in a structured environment knowing what will be coming next.

 

Well lets see what this week has in-store for us and also what will happen when we have the return to school.

Weekend and Birthday

Well after a week of hassle we had a lovely weekend, celebrating Oliver’s Birthday, he loved all his present and even took time to read the labels and see who they were from lol normally he just rips the paper open.

 

Oliver had a lovely time watching his first Reading game and is already planning his next one, they drew 1-1 against Huddersfield. He came home with a goalie shirt as well as the away shirt we had brought him for his birthday to wear to the match.

 

Oliver received lots of money for his birthday and he brought a new bike with it.

After taking a while to choose the bike we had halfords build it for us and it was meant to be collected yesterday, Oliver came home very excited that he would be getting his new bike and he waited for his dad to come home and then off they went to get the bike only to get there and be told they had forgot to build it. Yes I am not very happy and called the store manager to complain and I have to say I wasn’t happy with his explanation. I explained you can’t do this to children and not one who has Autism as they don’t understand. As you can guess we had the upset and meltdowns when he got back from the disappointment of not having his new bike. So I am hopping Oliver will be happier tonight and also get his bike!

 

On a plus note it is wheelie day in school today for children who haven’t lost golden time the last two terms and Oliver and his Sister haven’t lost golden time still and where able to take in the early Easter present of the stunt scooters (I couldn’t fit bikes in my tiny car 😦 ) to enjoy at school, so I hope the weather is nice for them.

 

I am hopping with this being the last week of term and the Easter holidays around the corner we might have a better week but lets wait and see.

 

xx