Tag Archives: diagnosis

Tips For Parents Of A Child Entering The Assessment Process.”

18 Aug

1) No child should receive an Aspergers diagnosis on a first appointment or assessment. That’s not to say it doesn’t happen. Yes, you maybe dead certain it’s Aspergers though professionals have a duty to explore every avenue and give your child a detailed assessment clearly observing them and then providing you the parent with a detailed document of his or her findings.

2) Be prepared, its likely (what with these awful cuts) that your child will not see the same psychologist more than once. You will feel that the continuous string of professionals are not making the assessment process any easier when you find yourselves being bombarded with the same questions over and over. ‘Yes we often ask ourselves… Do these people communicate with each other’

3) When assessing a school age child for Aspergers the team involved will usually request feedback from your child’s teaching team and school SENCO. Is your child’s school acknowledging your child’s condition? If not this can really slow the entire assessment process down. In the end the communication team at CAMHS had to go into my sons school to assess how he coped and acted in the school environment.

4) Remain on the ball. Often we are Frobed off by professionals with statements like they are awaiting a certain professional to get back to them or an appointment slot for your child to meet with the SALT therapist for an assessment. It’s at this times you often find yourselves dangling in thin air and before you even realise it its been months… Your slowly slipping through the net. Bombard the team working with your child with daily phone calls. Who cares if we are getting on their nerves? If we are silent we are forgotten and no one wants to be forgotten.

5) Keep all reports and assessment papers and letters filed within their own folder. This will help you to stay ontop of things. You will have dates at hand and be able to produce any needed documents at ease.

6) Keep your own written records. I’ve found that I’ve been told a lot of stuff of the record that could Potentially help my child but won’t in its undocumented state. I therefore make everything formal but taking notes at every meeting, during phone calls and any other time my child’s case is up for discussion.

7) Try not to miss important appointments as you will often find that its months before contact is even made and new appointments given.

8) Ask questions no matter how silly you think they may sound.

9) Trust Your Instincts. If you don’t agree with the professionals conclusions its your right to ask for a second opinion.

10) Its a long road, be prepared, don’t just go with it, be part of it! After all its your child and diagnosis could be a way to the services you require.

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My Child’s Diagnosis Didn’t Give Me Depression! The SEN System Did That!

7 Apr

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Its funny, Just recently I found myself engaged in conversation With a fellow parent at my daughter’s school. We were discussing depression, a subject I won’t hide from!

This parent reads my blog and is aware that depression has sometimes been a part of my life… More so than not.

So, if I’m ever asked a question I will try to answer it openly and Honestly. I’m not ashamed to say… “Yes I had depression” Why should I be? So, Having engaged in conversation for at least five-minutes with this lady I suddenly came to realise that there was some type of crossed wires on her part in regards to a depressive episode I experienced around 3 years ago! This started me thinking… Does everybody think the same way?

So I wanted to explain something, and do so very clearly! My son’s diagnosis of Aspergers Syndrome didn’t bring out any episode of depression within me. My child being on the autism spectrum has never actually left me feeling depressed! However, what has had me running for the antidepressants is that of the things that come with that diagnosis (like it being stuffed in a brown envelope and shoved in your hands). I’m not talking in relation to little man’s autistic traits, his sleepless nights or sudden angry outbursts! I’m talking about the battles to get others to sit up and listen. Basically, It wasn’t my child’s Asperger’s syndrome that depressed me it was the system in which I now found myself battling with.

You think a diagnosis is going to change thinks. The right help and support will come and be handed to you on a plate… Well dream on, it most certainly won’t! I learnt almost instantly, that for some, my sons diagnosis wasn’t worth the paper it was written on.

Over the years I’ve come to realise that being a parent to a child on the autism spectrum makes you a stronger person. It gives you fighting power, the type you never even knew you had! Because when your a mother its not only your job to ensure your child has everything they need to lead a full and happy life but the love you have for them that drives you. Almost any mother can relate to this regardless if their child is autistic.

Battling schools for appropriate educational services, educating society about autism and getting your child’s voice heard is all part of the package but it doesn’t necessarily mean its going to come with instructions, and I guess it was this aspect of his diagnosis that hit me the hardest.

Being told little man had Aspergers Syndrome was hard, I can’t deny it! No matter how prepared you think you are, you never are… Not really! Even when you’re told by specialists that its almost a certainty and you’ve therefore done all your own research and have reached the conclusion that “Yes, they are right… you can see it too!” I guess its because it makes it all the more definite, more final! But what must be remembered is that little man was the same child he had been the day before receiving a final diagnosis and I wasn’t depressed then!

Its all to easy to assume that the giving of a diagnosis is the reason why a mother crumbles and starts suffering such conditions as depression. What one must remember is that its all that comes after… The fight to make others do the right thing by your child, its this that can really drain your energy both physically and emotionally.

So if your about to receive that final slip of paper enclosed within a brown envelope, then brace yourselves… As the battle begins.

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Tips for preparing preschoolers with Aspergers for full time education

13 Jan

School isn’t an easy place for the child on the autism spectrum. Here’s some tips to prepare preschoolers on the autism spectrum for what lies ahead as well as some tips designed to help you, the parent, find the right school for your child.

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1- If possible introduce your child to a play school or a nursery setting so that they are given the opportunity to get used to being around other children. If you don’t, then you run the risk of problems when it becomes compulsory that your child is educated.

2- Introduce social stories that are centred around that of your child’s first day at school. Continue using social stories that cover school in general… especially trips, sports days and other activities that don’t happen on a daily basis.

3- When deciding on what school to send your child, take your time looking into the different options. If your child has a statement you also have the option of looking into special schools.

4- If possible take your child with you to look at schools. They may only be a pre-schooler but its important to see how the school sits with them. Be sure to choose a school that has experience of educating children on the spectrum and one that offers all the support your child will require.

5- Check ofsted reports as well as online reviews its important to do lots of research when it comes to schools.

6- Ask teachers if you could possibly take some pictures of the school and classroom setting (obviously not the children)! It would also be great if the class teacher and head teacher wouldn’t mind you taking a picture of them (the teaching staff). With these pictures you can build your child a social story that is centred around the school they will attend.

5- Pictures like those above could also be added to a child’s visual timetable. You could even create them a travel book. Inside this book you can display pictures of the teacher, toilets, playground etc… This would allow the child to use visual clues throughout the day in a number of ways. It would be an especially great tool for the non verbal child.

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6- Engage your child in role play. Have fun playing a game of schools, therefore preparing your child for the real deal.

7- Prepare your child for the world of education by starting out early. Giving a child a head start in education is a wonderful gift regardless of whether they have autism or special educational needs. Counting games and colour matching, arts and crafts and reading are all great ways to learn and will help your child practice concentration techniques needed for the classroom.

8- If your child has poor sensory processing then start introducing them into the world of sensory play. By playing a number of sensory games, over time such exercises could help your child adjust & adapt to different types of sensory stimuli.

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Above image from my autism and sen pinterest board (pinned from the awesome site Carrots Are Orange

9- If your child is yet to be diagnosed then do all you can to get professionals to see your child as early on as possible. Lots of children are diagnosed as being on the autism spectrum much later on once attending school. Children with Aspergers can often find themselves struggling in primary or even secondary school, while parents are battling the system for that of a medical diagnosis or a statement of SEN… quite often its usually both. Though, it should be noted that some traits of autism, especially Aspergers Syndrome may not surface till much later on, once a child is in school. Its not always a struggle to obtain the diagnosis. Good schools and SENCOs may be the first to spot a problem and therefore refer you to a specialist for an official diagnosis.

10- Children with Aspergers prefer a good set routine. School is a very structured setting and the child on the spectrum will really like this aspect of their school day. However, there are times when routines have to be slightly altered and changes need to take affect. We have found that unannounced supply teachers upset little man more than anything (even when he does have warning he still finds it hard to adjust)! Be sure that your child’s teaching team fully understand the importance of routine and the need to inform you of changes asap. Of course there will be times when changes are unavoidable and occur last minute but the earlier you know the better prepared your child will be for the change… However big or small it may be.

School is a substantial part of a child’s life. It is a place they will attend 5 days per week, for an average 6 and a half hours per day. Its imperative that they are comfortable in their learning environment. As parents it is our job to see that they are!

Ensure Your Child With Asperger’s Syndrome Gets The Education They Are Entitled To!

8 Jan

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Every child In England has a right to a education, one that is fulfilling in all areas, yet enjoyable too. Our children should start school with an array of wonderful learning opportunities ahead of them. They should be offered a variety of experiences both in and outside off their place of learning.

A good education should be one that not only provides a child with good levels of attainment but also helps build confidence, decreases vulnerability to poverty, inequality and social exclusion regardless of race, religion or that of disability and special educational needs. Sadly things are not always so black and white and regardless of laws and codes, schools and local authorities don’t always play by the book.

We as parents don’t often find ourselves worrying about whether our children will receive an education catered to their specific needs, especially before they have even started full time education. We often find ourselves assuming that professionals will teach and respect our children as one would expect them too. This is even more so if we are yet to discover our child has SEN or a diagnosis consisting of Aspergers Syndrome as this can often be picked up much later when things have already become kinda messy at school.

Maybe you are aware of your child’s specific difficulties and professionals won’t listen (sadly this is a common scenario). The situation is one made more difficult if you are still trying to obtain an official diagnosis for your child! I for one understand this, given my own son was diagnosed at the age of 8 years old, obtaining a statement of educational needs at the age of 10 following a somewhat tiresome battle with the local authority.

We all know that early intervention is the key to success. If your child is lucky enough to already have obtained their diagnosis before they have reached the age of compulsory school age, then you already have one hurdle met. This may seem strange to some…. Stating that obtaining any diagnosis of a social communication disorder is in anyway lucky! But it is lucky to have obtained this so early… Those who are still trying to get their child’s official diagnosis as they almost leave for secondary school, will likely agree!

Below I’ve listed some ‘Tips’ and “Need to know” advice, to help you ensure your child on the autism spectrum gets a full and rewarding education… one they not only deserve but more importantly… the one they are entitled to.

1: Remember just because your child has a diagnosis of Asperger’s syndrome this doesn’t Automatically mean they will be placed on the sen register.

2: You should know that it’s not just that of attainment levels or specific learning difficulties that leads a child to being placed on the sen register. It is also that of their emotional, social and behavioural needs. Some schools often fail to make parents aware of this when they are trying to obtain a better support for their child. Be sure to state your knowledge on the matter and don’t let them try to convince you otherwise.

3: Teachers often have the ability to “Forget” to inform parents of important developments, ones such as placing a child on the sen register. If you know your child is likely to be placed on the register or suspect so, then be sure to ask them in writing. If need be you have the right to request your child’s educational record. The Education Act clearly states parents must be informed that their child is on the register and the reasons why. All developments should be recorded and shared with parents in writing. Parents should also be even the option to contribute to their child’s IEP.

4: Always Talk to teachers ensuring they know your child’s diagnosis and more so… any traits or difficulties that may present themselves during the course of the school day.

5: You often find yourself not wanting to be seen as the overbearing, over protective mother. Nonetheless, its important to make a stand from the start. Working alongside your child’s teaching team is always the most beneficial way forward. However, letting them know you won’t be frobbed off is also OK too.

6: Its OK to ask your child’s teacher or teaching team what experience they have when educating children with additional needs, autism spectrum conditions and SEN. Here in the UK it is usually the SENCO (special educational needs coordinator) who you will want to meet with to discuss any worries or concerns as well as that of your child’s class teacher and if applicable, any teaching assistants.

7: Make an extra effort to record any incidents that occur at school. Whether it is the school that has informed you of these incidents or its something your child has told you, what may seem no big deal at the time may later be of importance, maybe even contributing to any evidence needed in order to get your child a statement of sen (soon to be health and education plan).

8: Make time to help your child at home with not only their homework but also social skills training. Use social stories to teach your child about different situations they may encounter while attending school and beyond.

9: Although it isn’t a pleasant thought you may want to bear in mind that children on the autism spectrum can often find themselves a target for bullying. Its horrible but sadly true that children can be very cruel. If your child’s traits are ones that are very apparent and stand out to other children as somewhat “Odd” I’d advise you to keep your ear close to the ground. Keep in regular contact with school and encourage your child to report any problems to a teacher they feel close to.

10: Remember, your child has the right to an education, one that is the same as that offered to his or her peers. Your child should not be made subject to discriminatory acts. Some examples are that of illegal and legal exclusions, internal exclusions or isolation, removal from certain lessons or not being allowed on school trips etc… without a very good reason. Those parents that are lucky enough to have their child’s diagnosis before they start school will have the opportunity to view schools asking questions on various subjects therefore ensuring their child’s needs can be met.

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11: If your child’s school is not informing you of any incidents especially those that affect your child’s emotional wellbeing, and therefore cause problems when at home as well as school, then request a daily school/home contact book. This means you can record any incidents that take place at home, ones you believe could affect your child during their school day. With this, the “Said” school would therefore be required to do the same. This would not only provide peace of mind but would also provide a written record that could provide useful if applying for a statement or making any claim with the first tier tribunal.

12: Watch out for illegal exclusion. No head teacher or other member of the teaching team should call you and request you collect your child unless they are officially excluding them from school. Parents may be told that their child has had a stressful day, they are tired, had a meltdown or are just being disruptive. The phone call will likely end with the school suggesting it would be better if you could collect your child so they can go home to calm down. Although you yourself may want to just take your child home avoiding them anymore stress, you should remember that the school are meant to officially exclude pupils and this exclusion needs to be put down and recorded on paper. LEAs need to be noted, work provided and letters given to parents. Schools don’t like having to record exclusions as this doesn’t look great on them (and who wants the paperwork). As parents, I guess we instantly don’t want this kind of stuff recorded on our child’s school records, especially when we are disputing the reasons surrounding an exclusion… Or do we? The school illegally excluding your child shows that actually… They cannot met your child’s needs! When trying to obtain a statement (or soon to be health and education plan) we need to show why our child’s needs can’t be met. By just telling an LEA that your child is being sent home regularly for poor behaviour, without anything to back it up, isn’t really going to get you anywhere. You need to provide evidence and this can only be provided by way of official exclusion.

Note… Even if you agree to collect your child, the school is still breaking the law by not making this official.

12: Children with Aspergers and SEN can sometimes have relatively bad attendance. This was specially the case for my little man. This has lead to three court appearances due to the lake of understanding provided by both his old mainstream school and the local authorities ‘Education Welfare Officer’ (EWO). Little man has an incredibly poor sleep pattern and this combined with the discrimination and other difficulties experienced when at school lead to the development of school phobia. It took me a long time to get him into the routine of going, so to have the school send him home at least three times a week was more than frustrating… It was shocking! Thankfully the last judge had little difficulty coming to that same conclusion.

Given this was my third appearance in court for this matter, and the EWO had stated that herself and the LEA felt that a prison sentence, alongside a grade two fine, would be the most suitable form of punishment for me (said by EWO when the judge asked her what outcome the LEA was hoping for) I was more than relieved to have the whole sorry mess come to an end.

13: Always remember to keep in contact with your child’s school if they are not attending. Make a diary and keep notes on conversations and appointments you’ve had. Cover yourself with medical evidence and like me… Request that the education welfare officer collect your child and let them endure the horrible task of trying to get your screaming child dressed and out the door to school. Especially when they are having a huge meltdown, acting violent and smashing up the house… And that’s on a good morning!

It actually took me three whole years of requests for the EWO to finally agree. Lets just say that she was now beginning to realise the stress I was under (not that it changed anything).

If your child is not attending then You should always request that work be sent home from school. Your child maybe school refusing but you don’t want them missing out on valuable education. I found that the school didn’t offer and I had to constantly request this. If you are taken to court and accused of Intentionally failing to ensure your child’s attendance (sec 4441(a) ) you can also show that your child was in fact educated during the period of time they have spent absent from school.

14: Remember the law states that your child must receive a full education at the age of five years old! The law doesn’t state that this has to be in a school environment. Home schooling is always an option and one you may consider best to ensure your child receives an efficient education. Nonetheless, its worth noting that by opting for this you remove the social opportunities a school environment presents (even if your child does struggle with such social settings). Dependent on how your child’s social skills are I’d be sure to ensure that home schooling involves lots of social skills training. When we home schooled little man after finally removing him from his mainstream primary school, I made sure he engaged in other activities alongside other children. He started boxing twice a week as well as a number of other activities. The LEA reports stated how they thought little man would have too many difficulties integrating back into a school environment as he wasn’t only left without a school for a year following mainstream but during most of his time at his mainstream school he was either excluded or hidden away in isolation! Reading such reports can be heartbreaking but in the end they only made me more determined to prove them all wrong. His now been in his independent special school for around 18 months and is popular among both the teachers and his peers.

15: Use visual timetables for both home and school. Highlight any up and coming events or changes well in advance placing them on a visual calendar. Making schedules and routines consistent between the two settings (home & school) could make things more simple for your child, therefore removing any anxiety towards school.

16: If your child has Aspergers or Autism they probably have a special interest in something or another. Little mans obsessive interest really did overtake his life as well as ours as a family. He would speak about nothing else and could quite literally drive you into a state of insanity with the non stop discussions on bus and train models. Having Asperger’s syndrome doesn’t make you stupid and as he started to get that bit older he realised that other children were taking the Micky out of his love of the big red bus. With this he did very well to suppress his interests while in school but this did have its downfalls… Once home he’d just explode. It would all come flying out and he’d normally have a huge meltdown before finally engaging in the activities he’d wanted to engage in all day. This meant little sleep… Very little sleep.

Its not so bad when your child is in an environment where other children don’t see him as particularly “Odd” They all have their very own “Special” interests to occupy their minds to even notice his. But some children ain’t this lucky.

Regardless of where your child is educated its important to try and maintain interests so that they don’t go too OTT (the point when your child can think of nothing other than their interest). Although they have passion, the lack of concentration & appropriate social engagement with others can present huge problems later.

You might want to start monitoring your child’s engagement in their interest to assess how obsessive these may be. If it shows signs of going over board you will need to try and limit the time your child engages in it. You can’t shut down their mind but distraction and routine is key. A child with a really intense special interest will probably know a lot about the subject and present some pretty impressive skills when it comes to their knowledge of the interest. This can be a real strength and as you celebrate this it will therefore help to install your child’s confidence. Just be sure they explore other areas too otherwise school work will not be tolerated if its not centred around the specific interest as they will struggle to concentrate on anything else whatsoever.

DON’T GIVE UP

7 Nov

I sit here today and I write you this post, a post that shares a very important message!

Don’t Give Up!

Too many parents tell me about the fight they currently face to obtain a diagnosis for their child. They tell me how others see them as uncaring because they are so eagerly chasing a label, one so many, wrongly claim to be unnecessary.

They tell me they just feel like giving up. They state the professionals have suggested they just wait a couple more years, see how things go!

They tell me they are tired, worn and lost.

I tell them it was the same for me… I state how I experienced the doubt, self judgement and sleepless nights! Then I tell them where we are at today!

Yes, I was tired… I don’t think I realised just how much till things had settled. I remember feeling that my concerns were looked upon as nothing but parental paranoia.

I remember wanting to scream out loud “Just shut up and listen” No, correction, I remember shouting this statement more times than I care to remember.

I questioned my own concerns. I felt that maybe I was going mad or worse that it was just me being a mother who was unable to do the job of parenting correctly.

I remember watching the months turn into years as I continued my battle, one that was just to get my foot in the Child Psychologist door.

In between there was issues, ones that turned into significant difficulties. More importantly, difficulties that could have been avoided or at least decreased in scale, if someone had just listened.

I did all I could do, yet it never felt enough.

School attendance fell, school phobia developed, but again, no one listened. Court cases and school attendance officers made my life more difficult and the fact I was found guilty and fined… Well, that just lead to my depression, lack of trust in the British justice system and great weariness in the operations of the LEA and everybody in it.

You sit there and think “Oh God, there really is no answer, no solution, no way to make them listen!” and as I started therapy I remember the endless tears that required my therapist to fetch more tissues. I remember the relief I felt, just to have someone… Sit… Just sit and listen.

Over the course of the battle, I saw my child become a target form both children and adults. I watched him change in personality as he tried to become someone he wasn’t… Someone who he thought he needed to be in order to be excepted.

Life is better now… I didn’t give up!

Little man has a diagnosis and this later lead to appropriate schooling and a much happier child!

You are the parent, you know your child. Don’t let anybody tell you differently.

Don’t give up!

Aspergers and how it really affects us as a family

12 Oct

Some people comment “It must be so difficult for you as a parent” My answer is always the same… “We’ll, I don’t really know any different”

You see, your born with Aspergers Syndrome and given little man is my first child it means I’ve been parenting a child on the autism spectrum for some 12 years now. It’s not like he suddenly got it and as a result everything had to change! You adjust from child free young women to mum and you adjust in the way that works for you and your child regardless of any condition or disability.

Ok, that doesn’t mean we don’t have difficult days… God only knows we do! But we have good days too.

The thing is, little man isn’t sick, his not got a disease but a condition. His a child that is very able he just struggles within certain areas of life but is able to learn skills to make these areas more comfortable.

There are some very difficult challenges that come from parenting my little man, the lack of sleep is most probably one of the hardest. But then so is watching him become extremely anxious and upset and being powerless to fix it.

I’ve mentioned before that for us the “label” isn’t an issue. It’s my opinion that many families need to acquire a formal diagnosis to open doors to services (that even then you have to battle to obtain them). Autism is a spectrum and although some families don’t feel the need to seek an official diagnosis, many others do.

A younger Little man with a younger Alice just before diagnosis

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However, there are some downfalls of that diagnosis and that’s the way others suddenly treat your child. We found ourselves fighting a discrimination case that we brought against Little man’s old primary school as he was forever excluded, bullied, isolated and more. The good thing the label did do, was give us the grounds to bring a case and ultimately win it.

The truth is the official diagnosis helped us get little man the education and treatment programmes he needed! It didn’t change Little man, he was still the same little boy he was the day before diagnosis… Yes he had Aspergers he just didn’t have Aspergers on paper!

Little man with baby brother Harley now 2

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In all honestly, life is much harder when your child has Aspergers but mainly because the system… It’s the system that needs fixing not the child.

Early intervention is extremely important as we all know. Nonetheless 18m to 2-year waiting lists to even see a child paediatrician is just diabolical! It’s in this space of time your child starts experiencing certain difficulties but has no access to the appropriate services! By the time he has the diagnosis the difficulties are now boarding on extreme yet your waiting another 18 months for an assessment for recommended treatment of appropriate programmes.

Little man’s siblings do often find things difficult especially Alice-Sara who has often experienced violence at the hands of her brother and his unpredictable behaviour. Yet, she has always been a sister to a brother with Aspergers and although this doesn’t make things different its still all she knows.

Another sibling war

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We get on with things… We are presented with problems such as that above we tackle them and we keep on tacking them in till improvements are made. Sometimes these are made quicker than others.

I’d be lying If I said little man’s Aspergers didn’t affect us as a family… Of course it does! But life isn’t unbearable, it isn’t a total display of darkness. Days spent full of meltdowns and distress. Sometimes Aspergers doesn’t come into it! Not everything he does is down to an Aspergers trait, sometimes his just having an almost teenage moment and although behaviour can seem challenging its just that of being a child growing up and having a moment of hot headedness.

Aspergers is apart of little man but it doesn’t define every aspect of his personality and even when it does it doesn’t have to be in that of a bad way.

Aspergers makes little man more goal orientated and rule bound which can be an extremely beneficial trait for a young boy. He is passionate and honest (most of the time) and very intelligent in many areas.

Parenting little man has also made me change as a person. It’s introduced me to a whole new way of thinking. It’s given me drive and passion, opening my eyes to what it is I’m good at and what I want to do with my life.

It’s brought me here to this very blog, its got me writing, sharing something that’s important!

We’re happy and although somedays we may seem as though we are not! We are… We are happy!

The Big Fat Autism Myths

10 Oct

Still today we are surrounded by countless myths concerning Autism and Aspergers Syndrome. Yes, we’ve come far to raise awareness for autism and the fact its a spectrum condition but still many struggle to except that some things are myth as opposed to fact.

Here’s some great examples…

Those on the autism spectrum have late language development!

Now although to some extent this is true, its not always the case especially in those at the higher end of the spectrum (Aspergers). Little man actually said his first word at 5 months and was able to speak very well by the age of 12 months.

Children on the autism spectrum make low academic progress because of learning difficulties.

Again this maybe the case for some children, mainly those at the lower end of the spectrum. However, some children on the spectrum have no learning difficulties whatsoever with some actually having higher IQ levels than those of their peers.

All children on the autism spectrum cannot attend mainstream schooling.

Admittedly mainstream school admitted that they could no longer meet little man’s needs and he eventually gained a place at an autism special school. This was despite him being on the higher end of the autism spectrum with an Aspergers diagnosis and a high IQ. Like many children with Aspergers he struggled with the more social side of school and suffered terrible anxiety. The truth is children with autism can receive a mainstream education… It just depends on the child and school in questions.

People on the autism spectrum don’t have feelings.

This is a big fat myth! If anything Little man feels to much and its these feelings of love and worry that cause him to become anxious. For little man its just harder for him to express those feelings… I know they are there and that’s a huge difference.

People on the autism spectrum don’t have an imagination.

Again this is a big fat fib. Little man finds it difficult to play imaginary games as he likes to base things on fact. He also likes to have a visual reference. However little man uses his imagination in other ways and is extremely clever at creating ideas when relating to something of interest.

All people with autism hate loud noise.

This is all down to the senses and regardless of autism we all have our own level of tolerance. Yes, many people with autism have heighten senses and this can make loud noise very uncomfortable (often to the point it becomes physically painful). However as well as children with autism experiencing sensory sensitivity, some are actually sensory seekers and will therefore seek out some type of loud noise.

All children who like Thomas the tank engine are autistic!

What can I say… Total Bull S#%# Yes little man liked Thomas the tank engine and statistics indicate that many children on the autism spectrum have a liking for Thomas at some point, however lots of children love Thomas and not all are autistic… That’s just crap.

All people with Autism are the same. If one person with autism experiences a certain difficulty then so will another.

Rubbish! This is why we call it a spectrum. Plus no two people are the same, we all have our own traits with and without autism. Yes there are a certain collection of traits that make up an autism diagnosis but this is a limited number.

All people with autism are Savants.

As lovely a myth as this is, it is just that… A myth! We all have things we are good at but only some of us have what it takes to be considered as Gifted which is the same for those on the autism spectrum. Many people with autism have things they are extremely good at (like little mans ability to memorise travel information) but rainman he isn’t and this is often the case for many.

Autism can be cured!

Most know how I feel about this myth. Autism is a life long diagnosis… There isn’t a cure. However, with the right education and learnt social skills things can be made less difficult for those on the spectrum.

Autism is caused by the MMR

Many will argue with me that this is not a myth. However I do believe it to be just that. You are born with autism, you do not develop it at some stage of your life. You don’t suddenly become autistic. And you don’t become autistic because of a childhood immunisation!

People with Autism are good a math.

Admittedly, little man is excellent at Math, but I do know other children on the autism spectrum who struggle with math and therefore find it their most difficult subject at school.

Children with autism can’t grow up to lead independent adult lives.

Many people on the autism spectrum, especially those on the higher end of the spectrum go on to have fully independent adult lives. This includes having a job, home and family of their own!

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I Just Want A Hug

4 Oct

I reach out my hand but you pull away, I open my arms and you flinch as if in pain, I open my heart up but you ignore to see the inner core of a heart that’s full of love for you.

Your first day at school you clung to me, arms wrapped so tightly around my neck I felt as though I couldn’t fully catch my breath… You did this for weeks, they blamed it on a detachment problem.

Then one day they just took you from my arms, carried you away while you kicked and punched as you screamed the word “Mummy” through your tears. Your tiny arm was stretched right out before me, your hand flapping up and down crying out for me to take a hold of it (something you never normally wanted). You wanted me to save you and I couldn’t. I cried but was told to toughen up, the tears wouldn’t help you.

“It will get easier” they kept on telling me, yet it didn’t every morning was the same as the one before.

I’d come to collect you, be stood in the playground waiting for you. Other mothers chatted and looked in my direction, some even made comments out loud that referred to me in some horrible way. I didn’t fit in but neither did you.

The bell rang out and as the doors swung open children darted out in all directions into the open arms of their parents. They stand staring as you appear from the doors, look at my open arms and ran the other way. Some could be heard whispering to one another, many laughed as I set chase running like some manic mother fearing her child may make it to the dangerous road outside.

By the time we reached home you were unstoppable, like a bull in a china shop you trashed about as you shouted and cried about everything and anything. I didn’t no what I should be doing to make things better for you, I wasn’t even sure of the issues you were upset about. I know now it was nothing precise, it wasn’t the fact we only had one biscuit, nor the fact I’d made pizza for dinner even though these were triggers, it was the underlying cause that was needing to be fixed. No… Not your Aspergers Syndrome, But your schooling.

We didn’t have an Aspergers diagnosis then… We had nothing but a load of court letters threatening court action for your school attendance that had now started to decrease. I’d try to get you there in the mornings but given you had not slept till 4am you’d wake with such anger. I was tired… You were tired! We didn’t need scare tactics what we needed was support.

Some almost 3 years and 2 court cases later you were diagnosed. I felt both relief and pain. You had been through so much and I’d failed to make them listen. I felt guilt for getting depression when the school just looked at me like some overprotective mother but at the same time some kind of shit one. I was screaming but no one could hear me, I now know that no one wanted to!

I felt resentful to a system that had failed to help me get the support we craved, to our british justice system who fined me what little pennies I had for your lack of school attendance… I felt guilty every Friday I saw my therapist and told him I felt like giving up.

There is a point to this post and for me a very important one…

Labelling isn’t always a bad thing it gives us answers, it gives a platform to start building on.

It wasn’t that my son refused to hug me because he disliked or loved me! It is because he is tactile defensive. Knowing that has helped, OT has helped and cuddles are now given once in a while (even if they are quick they are special all the same).

Without that label that many describe as wrong to give, my son wouldn’t have been able to attend the special school he does today. It’s pretty obvious now that my son’s autism traits such as hating change, poor social interaction and sensory processing were only part of the reason he feared the place he was expected by law to spend 6 and 1/2 hours of his day, 5 day a week attending. Bullying made up part of the fear which consequently, everything combined lead to what I now believe to be school phobia.

Without the label I’m scared at how life may have been today. Could I have found myself sectioned in a Psychiatric ward, I think quite possibly… Yes I could have! Where would that have left little man… Where would it have left his siblings?

Instead I started to get stronger and it was a bloody good job too. We had a lot of battles to come and I needed to be well enough to take them on.

I’m extremely passionate about advocating for families dealing with autism! It should always be understood that its not the diagnosis that is the problem but the carp that often comes with it! We do have to fight harder for what our children actually deserve, what is overly best for them. But to try and get any of these things without a label… Is like a dog chasing its tail in circles.

If your worried your child is on the autism spectrum, don’t let others make you feel bad for seeking your diagnosis. A label doesn’t have to be a bad move it can actually be a really positive one!

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Your Son Has Aspergers Syndrome

16 Aug

That day was here, it had finally arrived. She put on her coat, took a deep breath as she closed the door behind her.

Sat at the bus stop a thousand thoughts bombarded her brain, she developed a list of endless questions storing them safely to the front of her mind. Boarding the bus she knew it was almost crunch time.

The child & adolescent mental health centre was a modern building boasting floor to ceiling windows that had been brightly stained in an array of colours. She sat staring at the rainbow of colour the suns ray had projected through the coloured glass onto the cold tiled floor only to have her trance broken with the calling of her name.

Looking up she recognised the woman stood before her as the Child Psychologist who along with others, had sat for hours observing the behaviours of her then 9-year-old son.

The Psychologist smiled, though it was one of those awkward half smiles with her head slightly tipped to one side her whole expression cried sympathy!

“How are you?” she asked as they headed for the elevator! She responded by smiling gently while nodding her head and stating “Yes, I’m fine thank you” This couldn’t have been more dishonest! Her life seemed no less than a giant mess, her eyes alone expressed the story of sleepless nights and utter worry.

A weird, awkward moments silence commenced for what seemed like minutes though in reality it was only seconds when finally the ding of the elevators doors rang out. Stepping out of the elevator the Psychologist turned and with that same tilted head and half smile, asked “Are you ready?”

She was as ready as she’d ever be, for no amount of time could ever prepare her for this day.

After a short walk down a brightly lit corridor they came to a door, it was on the other side of that door that answers await, the answers to the question she had asked some two years before!

Entering the room they were greeted by a whole host of professionals, each on armed with a clip board, a glass of water and that same tilted head and half lit smile.

Taking a seat she felt her whole body tense, why did she suddenly feel this way? Looking at the tissues the Psychologist had now placed on the middle of the table right before her, she asked herself “Do they expect me to cry?”

After all why would she?

It had been more than 18 months since that first appointment, her son had seen every single one of these specialist and more besides, almost all giving the same conclusion following observation of his behaviours! Yes, if it wasn’t for the mix up, the mistake of a closed case following a silly mixup in paper work, she was almost certain this day would have come long go.

After that first appointment and first drawn conclusion with a child Paediatrician she had gone home and researched all there was to know on the topic and therefore realised that yes the reality of what that Paediatrician had told her was in fact more than a possibility!

So… why in god’s name would this woman now cry?

There was a whole lot of words, words that went in without being fully absorbed. Each professional adding their view on what support her child would likely require, what this involved and just how to go about getting it!

Then a pause…

Here it comes she thought!

Looking at the psychologist she concentrated on the movement of her lips as she said them words…

“So, we are all in agreement that the most suitable and fitting diagnosis for your child is that of… Aspergers Syndrome”

It wasn’t a shock… as mentioned the possibility had always been put forward.

As his mother she had taken it on board and adjusted her way of thinking when it had come to parenting her son, she already considered him a boy with Aspergers.

So… why did she find herself reaching for the tissues?

She didn’t cry through sadness, she cried because it was suddenly all so real, so official! With the diagnosis also came a certain degree of relieve, a reason for her child’s uniqueness. She could stop blaming his meltdowns or difficulties on that of her own parenting, school could stop shaking their heads and finally wake up to the fact that this is real and not an excuse.

Silence

Then…

“Do you have any questions”

Of course she did, she had that whole long list that she had readily stored at the front of her mind!

So… why could she not think of one to ask?

It’s been over two years and this woman has come along way. Like any family they have good days and they have bad days. She embraces her child’s uniqueness and encourages parents of newly diagnosed children to reach out to one another, sharing the message…

YOU ARE NOT ALONE!
But do you know what?

She still can’t remember that list of all important questions she stored so safely in the front of her mind!

The Kleenex man

10 Jun

I sit staring at the large white clock to the point some may think I’m fixated. It reminds me of the type of clock I used to have at school. I would stare at that clock for hours longing for time to lapse around me.

“Miss Parkinson… Miss Parkinson, can you hear me”

Shut up I thought, of course I can hear you, it doesn’t mean I want to!

But it was I who had came here, no one had asked me to, I wasn’t forced, dragged kicking and screaming.

It was I who had picked up the phone, dialled the number, made an appointment.

Now I didn’t know what to say…I didn’t… well no, I did know why I had come. But now I was confused so fucking confused.

“Miss Parkinson, have you got to be somewhere”

Bloody hell, now I felt as if I was in school! Seriously is he joking?

Sarcasm within therapy whatever next!

“No” I said

“Ok let’s get started, but at your own pace…OK?”

I nodded, I wanted to speak, really I did. I had a lot to say but now I was here my head it was all muddled like a jigsaw with pieces missing.

I had been here before, I trusted him, the man who wore the nonjudgemental face, the man who always had a box of Kleenex at the ready.

That’s why I chose here you see, I needed to see the Kleenex man!

I’m still staring at the clock, its tick and its tock can be heard through the bitter silence.

He coughs…. I look round

He smiles as he passes me those tissues.

Taking one I hold it tightly in the palm of my hand, if I don’t I know I’ll fiddle with it… likely pick it to tiny little pieces.

I take a deep breath in closing my eyes I excel opening them once more.

“Nobody believes me” I said.

I can feel it, the warm water leaving the corner of my eye. Please don’t ask me, I think. But then he speaks

“Who… Who doesn’t believe you, and what is he they don’t believe” he asks inquisitively.

Once more the room is filled with silence and I can hear the ticking and the tocking of the clock. I look down and there scattered around my feet are tiny pieces of tissue.

“Who…?” he asks once more.

As I go to open my mouth I taste the salt form my tears, like a child I catch my breath…

“The school… The school” I whimper.

Silence once more… Tick… Tock… Tick… Tock…

Then before he can ask…

“My son’s school, they don’t believe what is happening, they think it’s me… They think it’s all my fault!”

“They won’t help me… No one will, why, why won’t they help” I plead.

You see, I was close to the edge of crazy, so fucking close. The situation was costing me my health, what kind of mother would that make me? On That very day and at that very time I wasn’t aware of what I’m aware of now! The very beginning of a Journey one I never planned on taking, I don’t have a choice, no one asked me if it was okay, god didn’t ask me. I hate it when people say that god does everything for a reason, he chose me because I’m strong. Sat here writing this I remember that day with my therapist so clearly, and on that particular day I felt anything but strong! I felt desperate, I felt as if I was standing on a mountain screaming and nobody looked up… Nobody! Your little boy is hitting you, his so angry and he charges at you like some crazed bull, but his not a bull his a 6 year old child who tells you “mummy I hate you” as he rages with sheer frustration! But why is he frustrated? It’s just that, my lack of knowing… He wants me to, he needs my to understand what his feeling! I miss the trigger I then spend a lifetime discovering it. No one can teach me, I need to learn myself! But this doesn’t mean we don’t need answers… Everybody needs answers!

Ashamed I said nothing, for a while anyway. But i’m no super mum and soon I broke… Started crumbling into a heap of madness, but when I reached out, there was no one there to catch me. I didn’t say I needed parenting tips, I didn’t need some false caring stranger visiting my home and judging my parenting… Especially when I had asked my sons school for help. I felt judged, bullied… I felt disregarded! They failed to notice the bigger picture, they almost cost my child his diagnosis of Aspergers syndrome, they almost cost me my sanity!

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