All posts by maggs.hay

Autism Life

The Music of Autism

It was a lonely experience, as I watched other parents in play groups laugh while their children screamed, rowing their boats down a stream, or leaping up from the floor as the group leader shouted “wake up bunnies!” My boy was oblivious to any of the surrounding noise and interaction, he just sat and spun wheels on a car. A car which I had had to fight the playgroup leader to leave out after the previous game of tidy up.

As the song segment came to an end, I picked up my son and nodded goodbye to the other parents. They would wait around chatting and arranging visits to the park, as their children chased each other, developing friendships that would last a life time.

We left and I sat in the car, feeling the tears well up in my eyes, other times when the tears didn’t come I would uncontrollably hit the steering wheel in a bid to realise the anger and hardship of our situation. I had no control of which direction my brain would decide to release it, my body always just took over.

Then I remembered a nursery worker’s words from the week before. I took a deep breath and turned the keys in the ignition.

“Sing to him” she had said. She explained the interaction of singing, the tune and the vocabulary all combined together. “He will start to interact, then hum the tune, and who knows, maybe add some words in time” she had added.

So I open my mouth and through the sobs I sang! And I didn’t hold back. I only had one audience member, and any reaction would have made my day.

But nothing happened that day. I constantly flicked my eyes up to the mirror to seek any engagement, but there had been none, my son just continued to stare at the seat in front of him. I did however feel slightly better after a good belt out of “She’ll be coming around the mountain”, by the time I got home I was in full on performance mode.

Even though I didn’t get interaction or even a flick of eye contact from my back seat passenger that day. I never gave up.

I kept singing.

I would sit him on my lap facing me, and do every nursery rhyme and children’s song I could think of. Over time he began to look at me, and then allow me to show him the actions with his hands.

I sang all the time, wherever I went. I was Maria, just without the guitar or perfect pitch! After months of solos and crazy individual hand jives, one day my son gave me his interaction. His reward back for all my singing.

As he sat on the carpet clutching Teddy, I watched him rock back and forward to the rhythm of my voice. He listened and did the actions. There were no words, but after every verse he would look towards me for more. It was the first step to an amazing journey.

That was three years ago, and today I don’t sing as much as back then. My pitch is still pretty shocking, and Rhys is only accepting of the perfect note.

He however sings every day a tune he has learnt or something from the back catalogue. I love to sit outside his door, in an attempt to not disturb him and listen to his singing, remembering all those hours I dedicated just a few short years ago.

Never give up.

Always remember to ignore strange glances from neighbouring cars when waiting at a red light and rocking the latest nursery rhyme. Trust me, you are having a lot more fun than they are. Also you most probably will never see them again.

Belt out those tunes. Its worth it.

Music is magical, even when you are a bit out of tune.

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Autism Life

Why I stopped Saying “My Son is Autistic”

“Autism. My son is autistic.” Those were words I said to myself, over and over again, as I tried to let them sink in. They had come as a shock to me, I was someone who had never had any experience in additional needs.

Autism had just been a word I had heard of, but had no context. It had never featured in my life and there had never been a need to research about it.

But my son, who was still the same little boy before the diagnosis, was autistic. This wasn’t a delay or something he would grow out of, it was part of who he was.

“You don’t need to tell anyone if you don’t want to.” said the paediatrician across the table from me and my husband, “that is your decision. You can call it whatever you like. A communication condition or social complex need. But you will have the formal diagnosis to get the support he needs”

As the days and months passed, I only told family and close friends. I felt like I was living in a parallel world where other people’s lives moved around me in a haze while I just thought “Autism, autism, autism”

I needed that time. I needed it to process the reasons for my son’s meltdowns, communication delay and absence from our world. It had come as a shock to the system. A shock I had to take time to process.

I talk about myself and my need to mentally process the diagnosis, even though it was not my diagnosis, it was my son’s. My son was only three, and to him nothing had changed. He still did what he did every day, sorting out his number cards and watching the motion of wheels as he spun them on his toy cars.

On the outside I carried on as I always had.

In the park I would refer to my son by name, “This is Rhys”, I would respond to a stranger during an impromptu conversation. His muteness was easily overlooked. He was only three, where ignoring adults could be easily seen as acceptable.

It took me six months to finally say the words, “My son is autistic”.

I started to tell strangers about his diagnosis when I mentioned my children being at different schools, or when Rhys would gently push a small child aside to get past, or when he would not answer to a question an adult had directed at him.

It started to give me closure, and I felt relief as I started to share a ‘secret’ I have buried away for so long.

It allowed me to share awareness, show people what autism was. My son was just like every other child in the park, the play centre, and the supermarket, and I wanted people to know that.

I spoke about autism whenever someone asked questions about Rhys, it was part of him and something that would grow with him as he got older.

But then something changed.

I stood in the park last week. Rhys spun on the bucket seat, absorbed in the motion of the spin, and I watched him from afar.

“How old is your son?” a lady asked, her daughter starting to climb up the steps to the slide, alongside us.

“He’s six” I answered, “how old is yours?”

We exchanged details of our children, our crazy lives, the local area and the weather. Then we bid each other farewell.

I then stopped and replayed our brief conversation in my head. Not once had I mentioned Rhys’ autism, not once had I said, “He’s autistic”.

I had just spoken about my boy and who he was – his age, his school, his siblings. I realised that I didn’t need to jump in and announce his diagnosis, and give examinations to strangers, or let everyone know. I never give a run down of my other children’s characteristics, strengths and challenges, so why should I do that for Rhys?

I will always educate about autism and talk about it when there is a need, but I feel I have moved to the next phase. Years ago I took time to accept my son’s diagnosis, then I found the courage to talk about it and share his differences, but now I have realised that not every situation is about his autism, it is about him and who he is as a person.

I want to talk about my son. About the amazing things he has accomplished. His cheekiness. His sneaky and quirky character.

He is autistic, but that is not what he is, it is part of him.

Autism doesn’t define my son. Nothing defines my son, except who he wants to be.

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Benefits

Benefits for special needs

When you enter the world of special needs, it becomes a minefield of information, but also a treasure hunt to work out what you are now entitled to, and finding that information is not easy.

The benefits and support you and your child are entitled to is different all across the country, and you will receive different answers to questions on what you are entitled to and how to apply or get that support.

To take away the pain and struggle at a time when you have enough to worry about, I have detailed below a list of everything I have gathered over the years. The support, benefits and services you and your child are entitled to, some of them are even before you have a diagnosis.

Why am I entitled to support?

You may feel guilty about living a life never accepting or receiving any benefits or you may be use to the system, either way, if you have just entered the world of special needs parenting, or caring for a special needs child, you become eligible for benefits and services that you were not able to apply for before.

Don’t feel bad about taking these benefits. This is the purpose of the benefits system, to provide support to those who need it. As long as you are not abusing the system and taking something you are not legally entitled to, then you must accept that the benefit is there to help you, and helping your child get the best services available ,will help them and you in the long run.

First Things First

In the UK every child is assigned a Health Visitor a few weeks from birth, when the support is moved from the midwife, who supported you during your pregnancy. A health visitor oversees your child’s development and provides support up until your child is around five years of age, then they are transferred into the school system and under the support of the educational nurse.

In the case of a special needs child, they can be assigned a Special Needs Health Visitor. This will provide support and become the main point of contact to ensure you and your child are getting the supported needed, and any referrals to additional assessments or needs. A Special Needs Health Visitor supports you and your child up until the age of twelve.

To be assigned a Special Needs Health Visitor you need to speak to your GP who will arrange this for you. Your child does not need a diagnosis to have a Special Needs Health Visitor, they just need to be demonstrating a delay in two or more areas of development.

Your Special Needs Health Visitor will become your doorway to referrals and support needed, and if lucky, will have a pillar of information.

DLA – Disability Living Allowance

Disability Living Allowance or DLA is paid as a monetary amount on a weekly or monthly basis, and is to pay for the additional care needed for your child. It is not means tested (i.e. no restrictions if you are on a higher income or working full time).

No diagnosis is needed for application and award of payment. The assessment is based on mobility and care elements, with the assessment of these elements on a low, medium or high requirement.

The form for applying is very lengthy and can take a lot of time to complete. There are agencies who can assist with this, and my advice is to complete as if it were an example of your child’s worst day.

For the mobility element, in regards to autism diagnosis’ or anxiety, it is important to remember that becoming immobile is not necessarily a physical impairment, a child can become rooted to the spot unable to move due to a meltdown or anxiety. It is important to detail these scenarios.

To apply for DLA, you can access all the details and application forms at the government website below.
https://www.gov.uk/dla-disability-living-allowance-benefit

When your child is older, they will become eligible for PIP.

Carers Allowance

If you are the sole carer for your child with special needs, you can be eligible for a payment of Carers Allowance. There is a number of criteria to be eligible for this benefit, this is specifically around the care to be given and the number of hours, and existing benefits being claimed.

You cannot claim if you currently earn more than £128 a week from other income.

Carers allowance can be applied for via the government website at the below link.

https://www.gov.uk/carers-allowance/eligibility

Council Tax Reduction

You can apply for a reduction in council tax if you need to have an extra room in your house for your child’s needs. This could be a sensory room due to their needs. The room however cannot be their bedroom and needs to be a specific room set aside for this need.

You will get a visit to your house to check the eligibility and the use of the room to check it meets the reduction criteria.

This benefit is not means tested.

You can check your specific local authority’s criteria at the following link.

https://www.gov.uk/apply-council-tax-reduction

Watersure

If there is a need for your child, or anyone with a disability within your household, to use more that the standard households quantity of water for medical reasons, you can get a reduction on your water bill.

In the case of sensory processing needs, this could be for a swimming pool, hot tub, or additional washing requirements.

More details and application for a reduction can be found at the below link:

https://www.citizensadvice.org.uk/consumer/water/water-supply/problems-with-paying-your-water-bill/watersure-scheme-help-with-paying-water-bills/

Family Fund
There are a number of grants available from Family Fund, from vouchers for holidays, to payments for additional equipment or toys and gadgets for specific requirements for your child.

There are qualifying criteria which are clearly stated on their site, which can be found below:

https://www.familyfund.org.uk/blog/received-a-diagnosis-of-autism

Blue badge

In 2020 the blue disability badge was made available for hidden disabilities. There are many advantages of the blue badge, from being able to park directly outside the place you have communicated to your child, which reduces any anxiety or communication difficulties, to the short distance you need to walk for safety reasons.

The blue badge also becomes a great resource for “proof” of a disability when needing to queue jump, or demonstrate to attractions of specific needs.

It is important to clearly state the needs for a blue badge when applying. State the immobility due to your child’s difficulties, whether this is the probability of a meltdown, safety due to flight risk, or to aid in communication.

Application for a blue badge can be made at the link below.

https://www.gov.uk/apply-blue-badge

Radar key

The RADAR key is a universal key to unlock disabled toilets nationwide. These are vital when your child will not “go” in the bush or behind a tree, and you need access to toilets easily. It also means no queues when your child is unable to wait-their-turn.

There is no requirement to prove disability or need, and these keys can be purchase for a few quid from a range of outlets, but would suggest getting one from disability UK, link below:

https://www.disabilityrightsuk.org/shop/official-and-only-genuine-radar-key

Max card

The max card is available to foster families or those with children with special needs. It provides you discounts to many major attractions and days out across the UK.

New discounts and venues are continually being added. Find details at the below link and how to apply.

https://mymaxcard.co.uk/

School transport

Not a benefit you may immediately think about, but you can get school transport if your child’s educational setting is more than two miles from their primary residence.

Being a distance from your catchment is quite common, especially if they have gone out of catchment to attend the school applicable to their needs.

Going to school in a designated school transport or taxi arrangement may sound extremely daunting at first, but it is a great opportunity to allow your child to gain some independence within a controlled, organised process. Transport also gives you support and help with the school run, especially if you have other children in different schools or childcare settings.

Contact your education authority or school to get details on applying for school transport.

Home Amendments Grant

If you need to make changes to your home as a result of a disability, you could get a grant from the council. This may be for example to:

  • widen doors and install ramps
  • improve access to rooms and facilities – eg stairlifts or a downstairs bathroom
  • provide a heating system suitable for your needs
  • adapt heating or lighting controls to make them easier to use

A Disabled Facilities Grant won’t affect any benefits you get, more details can be found at the below.

https://www.gov.uk/disabled-facilities-grants

Respite

We all need respite to let us parents or carers recharge and give our children the best care we can. Often families do not have the support from grandparents or friends to take their children for a few hours or overnight. To arrange respite from the council you need to have a support worker. A support worker can be assigned through discussion with your Special Needs Health visitor.

Alternatively you can get payment from the council to provide to a person of your choosing to look after your child.

Queue Hopping

With a diagnosis you have the benefit of queue jumping at many major attractions. This is great for the whole family to get on the most popular rides and venues.

Normally you need to provide proof of the disability, which can be a letter from your GP or more easily, the presentation of your Blue Badge.

Young Carers

Having a child with special needs often means that their siblings miss out on some of the “normal” stuff. Across the UK, there are young carer’s programmes where siblings can go on outings they may not be able to do as a family, and also share their worries or questions with other children who are going through the same things.

Speak to your Special Needs Health Visitor for options in your area.

Wrap around care / Holiday clubs

There is funding for 121 support for your child when attending standard wrap around care or holiday clubs. This is a great benefit to allow your child to go to standard care settings, but with the support of a 121 carer who meets their needs.

This differs per council and worth speaking to your Health Visitor or local education authority as to what funding is available.

Mobility/strollers etc

As your child gets older, the standard stroller which allowed you to go places, will become too small for their needs. For many reasons including safety, ability to walk long distances, and your inability to constantly carry your child, you may need a specifically adapted stroller.

There are grants to provide equipment like strollers for approved needs. There are a few methods of applying for these grants, but in general they come after an occupational assessment. A referral to a Occupational Therapist once again will come from your Special Needs Health visitor or GP.

There are many other benefits, whether monetary or not. There are also many different ways you can apply or obtain these, I have only detailed one method, and tried to provide an awareness of what is available.

Please comment below if there is anything I have missed, or documented incorrectly, I will then update and build on this to ensure we can all get what we are entitled to.

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Guest Post

Is This Our Forever?

Guest Post by Ellie Whetzel

A good friend recently asked me what kinds of things Leo was interested in these days? 

“Toy Story, like always,” I responded, chuckling at the thought of how often I’d responded similarly over the years.

For as long as I can remember, Leo has been transfixed by the popular series of films; his love for Sheriff Woody, Buzz, Andy, and the rest of the Pixar gang, have stood the test of time, resulting in a most impressive collection of Toy Story merchandise; from figurines, to plush dolls, books, t-shirts, and the like…But more importantly, they have provided a sense of connection and belonging burrowed within a world of characters, and friends that have bestowed comfort and companionship onto my boy for years…

“Cool Sheriff Woody doll,” I heard someone remark, as I turned to find two young men appearing to be in their mid to late teens, walking past us in the grocery aisle. I quickly scanned their expressions, as best I could with half their faces covered, searching for any signs of malintent, while my boy vocalized loudly, squealing as he twirled his Woody doll around furiously with excitement. 

As my gaze met one of the young men’s, he nodded knowingly, 
“Sheriff Woody is my favourite.” He commented, genuine kindness reflected in his tone as they continued on their way.

I looked over at my sweet boy, carrying his pal Woody securely within his grasp, just as he has since he was a young child.

I marvelled at how much my boy has grown since the day I bought him his first (of many) Sheriff Woody dolls; that moment etched in my memory, always. The joy radiating from his beautiful smile some 8 years ago remains woven in my now 10 year-old big boy’s being, personified by the clickity clack of Woody’s boots, each morning upon Leo waking.

Andy and I had a conversation a few years back about the future for Leo. At the time, Leo was primarily non-verbal, with a myriad of challenges that stifled any hopes that he might one day be able to live independently as an adult…Yet, as my amazing husband pointed  out then and continues to today, the future isn’t set in stone for any of us; Leo included, and we simply don’t know where Leo’s journey will take him years from now. 

It certainly isn’t up to us to write his story..

And while we still operate in many ways with this mindset, there comes a point where hope, and reality intertwine-

Leo’s Speech/Language delays remain immense. And while there is so much hope and pride in what he has accomplished, the reality is that along with Autism, progress is often paired with new and unexpected challenges, creating an ever-present roller coaster of thoughts and emotions…

Hope and pride is never extinguished, yet the years trickle by, and I find myself facing the stark realisation that in 8 years time, my sweet Leo will enter adulthood. 

My mind wanders to the reality of Guardianship once he turns 18…of Special Needs trusts, and all that looms in regards to caring for an adult with disabilities-

I worry about services- of how scarce they are once children like Leo “age out.” He will likely be able to attend school until he is 21 or 22. And then what? The options are limited and the worries associated  with how I will help my boy as he grows into a man, daunting.

8 years…

I have time, I suppose.

Yet, the memories of my boy holding his very first Sheriff Woody doll 8 years ago, are as vivid and clear as if they occurred just yesterday…

And I think once again of my friend’s question…

Will my answer remain the same 5 years from now? 10?

Will Leo still insist on taking his pal, Woody along with him on outings when he’s grown…and will there come a time in the not too distant future when thoughtful glances will turn to judgement, from those who don’t understand?

My 4 pound 9 ounce newborn, who now stands at eye level with him Mommy, holding out his hands and requesting “up” as he did from the time he could stand-

Despite the fact that to my dismay, I can no longer physically lift my boy, I’ll always be there to wrap my arms around him…even as he towers over me, I’ll be there.

To love and protect him…To advocate and teach the world about the beauty and wonder that is my boy.

If this is our forever, what a beautiful forever it will be.

About the Author: Ellie Whetzel is a wife, Mom, and blogger who writes about the ups, the downs, and everything in between of life with her extraordinary son, Leo, who is on the Autism Spectrum.

You can follow their journey on FaceBook at https://www.facebook.com/mylifewithleo/

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