Getting creative with Hama beads

Getting creative with Hama beads

So today we had our first session at The Fuse in Partington. It was great to see lots of familiar faces and also some new ones too. Everybody was very excited to be at a new venue and parents and children alike commented on what a great place it is for our group; “It is lovely to have all the children in one area so they can interact more and share interests”, “it’s such a nice, bright, open space”, “I liked playing on the Wii and the table football” were just some of the comments. The parents room was nice and spacious and there was lots of discussion regarding things like diagnosis and the difficulties some people face in getting this.

Laptop games

Laptop games

Wii dance

Wii dance

Today saw the start of our course of Art Therapy sessions, run by a qualified artist.

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Our first session had a ‘Space’ theme and the children all created a space model using wire, pipe cleaners, ping pong balls and special pens which glow under ultra-violet light. they were assembled on recycled wooden blocks which some children chose to decorate.  Everybody also made a night sky ‘constellation’ picture, by tracing around animal shapes on black paper, adding glow in the dark stars and joining the stars using glow in the dark paint.  The children loved it when Jo turned off the lights and all the models and night pictures glowed under the ultra-violet light, showing off their hard work and fantastic artiness.

We are running a course of six 1.5 hour art therapy sessions. Places for this course are already filled but if you are interested in learning more about art therapy or would like details of other classes that Jo runs please contact us via email.

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January saw our last meet-up at the ASGMA building, where we have been meeting for the past 16 months.  The HFT committee and members would like to say a huge thankyou to all at ASGMA for their support during our time there, it was much appreciated. We wish them well in all they do for teens and over who have autism/Aspergers.

From February we will be meeting at our new venue – THE FUSE in Partington.  We look forward to seeing all of our regulars and hopefully some new and old faces at this exciting new venue. THE FUSE has fantastic facilities on offer; there are laptops, play stations, wii, pool table and art/craft activities for the children, whilst parents can meet in a separate room to chat and support each other.

Please see our EVENTS TAB for monthly meet-up dates or if you would like more information feel free to contact us.

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Sunday 25th January saw our first meet-up of 2015 with a great turn-out. We had a visit from Kate Green MP, who met the children and chatted to them whilst joining in with activities. She also joined our parent chat where parents explained why they value having our support group so much. She listened to families experiences of the diagnosis process, camhs and schooling options. It was great for us to hear parental feedback letting us know that what we are doing is helping people, which is the whole purpose for us setting up our group.

 

 

Some children may have issues with the taste or frothiness of regular toothpaste due to Sensory Processing issues. I recently came across a toothpaste which gets around this but still contains the right amount of fluoride. It’s more expensive but worth every penny. It has to be ordered from a pharmacy – ASDA at Trafford Park are trialling it at their pharmacy as myself and another parent have recently asked about it. For more info see the link: http://www.oranurse.co.uk/

oranurse toothpaste

I also came across a new type of toothbrush which may be helpful for children with hypermobility or dyspraxia, who struggle to get at all parts of their teeth. They come in a range of colours and are age relevant so if ordering check you get the right one for the childs age. You may want to Google them if you are thinking of buying one or more as there may be other sites that sell at a better price. See the link for more info http://www.dentocare.co.uk/Products/Superbrush/SUPERBRUSH-COMPACT-JUNIOR

barman toothbrush

For parents who are just starting on their autism/Asperger’s journey there is a lot to take in and understanding the terminology and abreviations for the various professionals, procedures etc can be confusing on top of trying to come to terms with their childs diagnosis. We have listed some of the abbreviations/terms you may come across below, however if there is something you think should be added please feel free to contact us so we can update this post.

Annual Review Meeting – If your child has a Statement or EHC plan this will be reviewed yearly at an Annual Review Meeting (people who should attend are parents, school SENCo, SALT, class teacher)

ADOS – Autism Diagnostic Observation Schedule. In order to get a diagnosis your child may have an ADOS test as part of their assessment. The test is carried out by a trained professional (usually a paediatrician) and usually takes around an hour.  They are looking for the prevalence of autistic behaviour and once completed the scores will be totted up and if the total is above a certain number it is likely that your child is on the spectrum. You should receive a detailed report which will also state where your child scored.

AS – Asperger’s Syndrome

ASC / ASD – Autistic Spectrum Condition/Disorder

CAMHS – Child and Adult Mental Health Services

Carers Allowance – A benefit which you can apply for if you are a parent/carer of a child who receives middle rate DLA and if you earn less than £100/week.

DLA – Disability Living Allowance. A benfit which you can apply for if your child has a disability (diagnosis not essential) and needs extra support over and above that of a typical child of the same age.

Dyspraxia – affects fine/gross motor skills and also organisation and planning ability (eg difficulty using knife and fork, slow and unsteady coming downstairs, cannot ride a bike, needs help to organise belongings etc)If you think your child may have Dyspraxia it is best to ask for referral to an OT. For further info see our useful links section.

EP / Ed Psych – Educational Psychologist. Most children with autism will have seen an Ed Psych as part of their original assessment. The Ed Psych can advise as to how the child can be best supported in school.

EHC Plan – Education, Health & Care Plan (brought in Sep 2014 to replace the Statement of SEN, this is a document issued when a child needs extra support at school over and above that of their peers)

Hypermobility – double-jointedness. Many children will have hypermobility, it can affect one joint or several. Most commonly seems to occur in fingers, elbows, hips and feet. Children may also have low muscle tone and may complain of aching legs when walking or sore hands when writing. An OT referral is the best route for diagnosis.

IEP – Individual Education Plan. A plan agreed between school and parents to help a child with a Statement/EHC to achieve their own personnal tagets. A paper copy is normally provided listing the targets and how they will be achieved. The plan is normally reviewed at least twice per year.

Irlen Syndrome – some children are reluctant to read or may lose their place a lot, misread words, skip words etc. It may be worth getting them assessed for Irlen Syndrome (certain opticians are able to do this). If the child is found to have Irlens they will be recommended overlays or even glasses in the specific colour which is appropriate to them.

LSA / TA – Learning Support Assistant/Teaching Assistant. If it is deemed that your child needs extra support in school they may be assigned an LSA/TA who will help them to access the curriculum.

OT – Occupational Therapist. If your child has coordination difficulties they may be referred to an OT for assessment. The OT can help with things like pencil grip, use of scissors, dressing etc. and can give advice on how to best help your child with their difficulties. See also SPD below re Sensory OT.

SALT / SLT – Speech and Language Therapy(ist). Many children with ASC will see a SALT, they help with understanding of words, knowing what to say, pronunciation, helping with stammers etc.

School Action. Help for a child using the schools own resources.

School Action Plus. Help for the child using extra (outside) resources.

SEN – Special Educational Needs. Any child diagnosed with autism or Asperger’s syndrome is considered to have SEN, even if they are very clever.

SENCo – Special Educational Needs Coordinator (every school should have an assigned SENCO)

SPD – Sensory Processing Disorder. Most children who have autism will have some degree of sensory processing disorder. They may be hyper or hyposensitive to things such as bright light, certain noises (hand-dryers being a common one), smells, tastes (picky eater or over eater?), being touched etc. Trafford has a Specialist Sensory OT (waiting list) but you can also see one privately. See our useful links section for a link to more info.

Statement – a document issued when a child needs support over and above that of their peers. The document states the childs diagnosis’ and what support is needed in order to help them achieve in an education setting.

For further information on some of the above please have a look at our Useful Links section or if not try Google or contact us.

DLA

If you have a child with autism/Asperger’s you are likely to be entitled to DLA (Disability Living Allowance) for them.  The child doesn’t have to have a diagnosis but you have to be able to prove they need more help than a typical child of the same age.  The DLA document that needs to be completed is quite a long document and you have to give a breakdown of how long various tasks take to complete and what extra help your child needs.  It can be quite difficult to complete, especially for the first time, but Parent Partnersip are usually available to assist if needs be.  DLA is not allocated depending on income as it is a benefit awarded for the child rather than the parent.

Carers Allowance

If you are in receipt of middle rate DLA and you earn less than £100 per week you can apply for Carers Allowance. This is a benefit paid to the parent/carer.

 

If you are in recipt of either of the above you may find it handy to keep a copy of your confirmation letter in your handbag for when you go on days out as many venues have concessions for the disabled/carers which may include free or discounted entry and in some cases a fast-track entry so the child doesnt have to queue.  Some local venues which honor this are Legoland, Sealife, Blackpool Zoo, Lowry Theatre and there will be many more.

As well as the HFT support group, the following may be of interest to parents:

Swimming lessons (costs vary):

  • Carrington (Man. Utd. training centre) – 1:1 half-hour sessions, varied depth pool.
    Contact Karen on 0161 749 2570
  • Stretford Leisure Centre – 1:1 or small groups, half hour session in shallow training pool.
    Contact 0161 875 1414
  • Seashell Trust, Cheadle – 1:1 or small group, half hour session, whole pool is approx 1.5m deep.
    Contact Wendy on 0161 610 0159

CEA Cinema card

  • If your child likes the cinema you can get a CEA card which allows a parent/carer to go free. Costs just £5.50 and is valid for a year. Also, please note Odeon cinemas sometimes run ‘autism friendly’ screenings of certain films.

Discounted entry with DLA / Carer’s letter

  • To places such as zoo’s, theatres, bowling, Sealife and Legoland. Some places like Legoland also offer fastpass so you don’t have to queue. Just take a copy of your DLA or Carer’s letter along and ask if they do disability concessions at the entrance.

Private Autism Assessment

  • Spectrum North West, based in Warrington, offer a multi-disciplinary autism assessment using DISCO, ADOS, observation and sensory profiling tools. For more information and contact details visit their website www.spectrumnorthwest.org

 

Today was our last meet-up of 2014. The children enjoyed christmas activities in the craft room, played on the laptops, played pool and table football and even had a spontaneous sing-song.

It was good to catch up with parents and to share experiences and hints n tips.

We even had festive mince pies and cupcakes.

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The HFT committee would like to wish our members a very happy Christmas and we look forward to seeing you in 2015

What a great meet-up we had today with five new families attending.

The children enjoyed playing on the Wii, singing along to Frozen, playing various instruments (the drums are always popular!) and creating some fab designs using Hama beads. It was lovely to see the newbies welcomed by the regulars.

It was great to meet new parents too and discuss where they’re at on their journeys. A common theme seemed to be that professionals involved were reluctant to ‘label’ the children – which those living with ASC will know is so frustrating as, to quote the NAS, “it’s not a label it’s a signpost” – a signpost to getting the children the support they need, including from parents. How can a parent explain to their child why they are different and help them to understand their issues without that ‘diagnosis’!  would they choose not to label somebody who has diabetes?