The Do’s And Don’ts When Parenting A Child With Aspergers Syndrome

Its not easy being a parent to a child on the autism spectrum! Actually… It isn’t that easy being a parent full stop!

Below are some dos and don’t, all based around the stuff I’ve learnt while parenting my little man. Remember, I’m just another parent like you! No, I’m not doctor or child psychologist and what works for us may totally not work for you. But why not have a read anyway… If anything you won’t feel do alone. Please, feel free to add anything within the comments sections:)

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So… Here it goes…

Don’t feel guilty if you failed to spot the signs at an early age.

Do remember that this is common for children diagnosed with Asperger’s syndrome with many of them not gaining an actual official diagnosis, till their teenage years.

Don’t be to proud to ask for help!

Do fight for it, if those who are meant to provide it, withhold it!

Don’t force your child to be someone they are not!

Do show them you are proud of them for being the person they are.

Don’t assume its easy!

Do remember that parenting any child can at times be challenging.

Don’t feel you have to explain your child’s behaviour, every single time they do something that makes others stop and stare.

But do educate those who are willing to listen! The important issue here is, not to get stressed when out and about. this only makes things more difficult for both yourself and your child. Remember its ignorance and sadly many are guilty of displaying it!

Don’t restrict the activities you do as a family.

Do prepare your child for such occasions with the help of visual resources and schedules to avoid unwanted challenges on the day.

Don’t forget you have a life too.

Do take time out for you, whenever the opportunity arises.

Don’t assume that any two children diagnosed with Aspergers will experience the exact same traits.

But do make yourself aware of such traits, preparing yourself for what may lay ahead.

Don’t assume a diagnosis is your child’s ticket to the support and services they may need.

Do be prepared to battle for them, services! Yes, you’ll be expected to provide evidence showing why it is the help is needed.

Don’t just expect others to instantly understand your child’s diagnosis

Do be prepared for ignorance & denial. Sadly many find that its friends & family who display the worst reactions to the news of a child’s diagnosis. As for strangers…. I not don’t even notice the states as my son displays a screaming match at the local train station. Ok its never easy, but you adjust and get used to it.

Don’t freak out if your child develops an interest in something considered to be strange or unusual.

Do embrace and encourage all that your child loves regardless of its wackiness.

Don’t assume your child will have learning difficulties.

Do celebrate the subjects they excel in, and offer help and support to improve in those they are not.

Don’t base decisions on what you want for your child!

Do base decisions on what is best for them.

Don’t beat yourself up if you lose it! Meltdowns that go on for hours are likely to make you crumble.

Do remember that your human and your child still loves you ( regardless of what they may say).

Don’t be surprised if your child announces to the lady sat on the bus, that she’s old, wrinkled and looks close to death.

Do play games and work on activities designed to help your child avoid social mishaps like that of the above.

Don’t waste money buying your child the top branded toys, especially if they have failed to express any interest.

Do make them happy on Christmas morning if padlocks, staples and rulers were on their Christmas list.

Don’t be too disheartened if your child shows no interest in making friends.

Do have hope that one day that will change!

Don’t force your child to play with other children…

… But do teach them the social skills required to do so! Most children on the autism spectrum will eventually show a desire to interact and play with others.

Don’t waste your time looking for cures

But do look into therapies that have been designed to help your child better develop the skills required to succeed in both child and adulthood.

Don’t assume that just because your child doesn’t display certain traits during childhood they won’t during adulthood.

But Do remember maybes are not certainties.

Don’t try to make your child fit into society!

But do mould them as you would any child so society fits with them.

Don’t use complex language (metaphors and sarcasm) when talking with your child

But do try and teach them that others will to avoid miscommunications.

Don’t force your child to wear certain clothing, eat certain foods or attend certain activities.

Do be sure to research sensory processing disorders as their refusal to do any of the above could be and likely is related.

Don’t assume that your child with Aspergers will have the abilities to cope in a mainstream school (not all can)!

Do make sure you are open minded… Sometimes special schools are all your child needs to succeed within education.

Don’t use your child’s diagnosis as an excuse for unwanted behaviour.

Do remember that all children can be challenging and all are not autistic… You will learn the difference, I have!

Don’t forget to be mum to everyone

Do remember that siblings of children with Asperger’s syndrome may display unwanted behaviour or mimic their siblings traits as a way to gain the attention they crave.

Don’t assume your child will be bullied.

But do look out for the signs as statistics have shown that it is children like yours and mine who become targets.

Don’t force your child to believe in the mystical world of make believe.

Do remember that many child with Asperger’s syndrome like things based upon facts, the type backed up by evidence. If you can’t prove how santa gets round the world in one single night then chances are he will never believe. Just make sure he doesn’t share his findings with his siblings… Like little man has tried.

Don’t ask your child if you look good in a new dress unless you want blatant sharp honesty…

Do be prepared to be shown your love handles and chubby knees if you do.

Don’t believe everything the books tell you.

Do remember that every child has the capability to at least try and lie… Well, at least the desire to try and do so, is usually there! Its just that children with Aspergers are not all that hot at it! Little man usually cracks within minutes.

Don’t be so serious…

Do crack a smile, your child with Aspergers is more than capable of making you proud… Mine does.

Don’t just assume your child will tell you if something is wrong! Aspergers is a communication disorder after all!

Do be ready to put on your investigation cap, as you try to discover just what has upset your child… Remember they will expect you to just know.

Don’t feel that everything has to become a mission in life because of your child’s condition.

Do be prepared to be pleasantly surprised when your child shows you that something you thought would be impossible for them… is actually totally possibly.

Don’t waste time asking yourself “What If?”

Do remember that we have one life, Our own unique and special story. All children deserve to be brought up happy with stacks of love and great memories to support it. Our children will eventually grow up and fly the nest… Yes even those with Aspergers Syndrome! My point? Just enjoy your kids, never taking a single day for granted… Even those not so good ones!

Stages of SEN, Is my child receiving the right support

STAGES OF SEN

 Is my child receiving the right support?

 The stages of SEN are known as the ‘Graduated response’ that all maintained educational settings must abide.

 Some children will receive a statement even before starting full time education. This would only happen if the child in question had such needs that would undoubtedly require extensive provision to be made when the child was to start at school. Sometimes this maybe due to the child having a severe learning difficulty or disability, one that is discovered in the foundation stages of education, between the ages of 3-5 or even before this.

 However, many children go into full-time education (primary years) having either no medical diagnosis or any obvious learning difficulties (this is especially true for the child who has ADHD or high functioning autism).

 All maintained schools must by law publish a SEN policy that should be made available for all to see. The special educational needs co-ordinator (SENCO) along with the head-teacher and class teacher are normally a concerned parents first point of call. The SENCO’s key role and responsibility is to ensure that the SEN policy is being applied and its content remains efficient in how it applies to the school and the children in it. (though it is also the duty of the governing body and head teacher to ensure all policies remain up to date) The SENCO will also have the role of  ensuring the provision that is made for each individual child who is placed on the school’s sen register, making sure this is effective and the child is therefore achieving. This is where the Graduated response comes into play!

 Note: Although the SENCO will be expected to provide such duties as those above, it is the school as a whole (head-teachers, class teachers, governing body , etc.) who must together ensure a child is given the appropriate support to ensure that educational progress  is made while social & emotional needs are met. 

 On entry to a maintained Primary School

 Note

On access to primary education all children should be assessed to establish their attainment levels and individual learning style.

 A child who is starting primary school and is noted as having special educational needs, will be assessed using the curricular and baseline assessment process, therefore identifying the level of need the child requires.

 The child should then be placed on the SEN register and staff (teacher, senco etc.), should work with the parents to develop a suitable learning programme.

 Parents should be kept fully informed on their child’s progress and schools have a legal duty to inform parents when their child has been identified as having special educational needs and are placed on the SEN register.

 What is the Graduated response?

 This is basically an array of different strategies that need to be but into place to enable children identified as having SEN a way to progress both academically and emotionally. These strategies are broken up and divided into groups. It is only when all these strategies have been tried yet failed can a school claim to have used all its own resources in trying to meet a child’s individual educational needs. It is at this point that a school will claim that it cannot meet the child’s needs within its own resources. This is the point a statutory assessment and possible statement is needed (however I will touch on this in the next post, ‘Request for a statutory assessment’)

 Note: Remember, there are times when exceptions have to be made meaning a child could go from school action right to the assessment process as the child’s needs have changed so much, even resulting in a managed move to a special school for the period of assessment (I will touch on this more in the next post, as above). 

 The stages of SEN

 Stage 1

 School Action:

  This is the first stage, when a child is identified as a child with Special educational needs (SEN). They are then placed on the SEN register and the parent should at this point be notified. Teacher, teaching assistants and Senior staff and of course the SENCO, must work closely together with the parent putting a number of strategies in place to ensure the child makes good progress. These strategies may not involve anything huge and in many cases work set out for the child is just slightly differentiated from the work of their peers. Many children progress well and eventually are removed from the register needing no further assistance. 

 What, if it’s the other way around and your child doesn’t make progress?

 This is when we move on to the next stage.

 Stage 2 

 School Action +

 When the child in question fails to progress on school action they will move to school action plus. This is often when the child’s needs require a much higher level of support. It is common step for the child who have social, emotional difficulties or those on the autism spectrum. It is also common for a child with such difficulties, to move from school action to action plus pretty quickly (however it’s the step after this that’s one of the biggest and hardest to reach). 

 What happens on school action plus?

 The SENCO will at this point have the use of external services if need. Everything needs to be fully documented, as the school will need to show the LEA that they are not wasting school resources (funding) when other courses of action could be taken. The child’s targets will be recorded on an Individual education plan (IEP) the IEP will state the child’s short term targets and the provision that will be provided as to allow the child to succeeded in meeting the targets described. There will also be space for recording the outcome  (whether the child meet the targets) and the date/term in which the IEP commenced as well as the date it will be reviewed. Parents should also have a hand in the issuing of the IEP giving some parental input. 

 It is at this point the school can apply to the LEA for additional funding for services that operate outside the school. External services could include, visiting services or the provision to appoint support stuff on an individual basis. It has been known for a child at school action plus to receive 1-1 provision throughout the whole of the school day, including break-times! However, it should be noted that the school cannot usually continue with this level of support and should have usually applied for the process of a Statutory assessment from the LEA (which is something a parent can also apply for)

 This is where I finish and will continue this within the next post, ‘Request for a Statutory Assessment’ which will follow soon.

 This post will be available to download from GoogleDocs for your own personal use. 

Please note that you will need to wait for a period of 24 hours before it is available on GoogleDocs 

Claire Louise