When it feels like you are on reality TV as an autism mum

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I am not a big fan of reality TV despite the fact I am actually quite an avid people watcher at times. Sitting on a park bench watching people walk dogs, have a romantic stroll or push a toddler on a swing is much less intrusive than watching their every meal, their every move and listening to their every word.

‘Intrusive’ is a word often used about reality TV but it could just as easily be used to describe my life as a mum to two children with autism.

Since my children were young my life, my home, my children, my lifestyle, and even my marriage seems to have been laid open for so many people. Some weeks, even now four years since my son was diagnosed, my front door feels like a conveyer belt for professionals.

Just like a reality tv star I feel sometimes like my every move is being watched.
I have had occupational therapists, social workers, speech and language therapists and mental health nurses in my home when I have been making tea for my children or playing with them and some have even went as far as to watch my children eat. I signed up for support but my children never signed up to be watched like that. I don’t t believe it is healthy for them but sometimes it just can’t be helped. While professionals have been visiting my children have required their personal needs to be met as well. Although I remove my children from the room for this it is still embarrassing and upsetting for my children and disturbing for us all.

Just like a person on a reality TV show I know I am talked about lots.
While I get invited to many meetings I am also very aware that there are many meetings, emails and discussions between professionals that I am not privy too. People form opinions of me and even have a right to record these opinions in reports. Parents are ‘fair game’ simply because our children need extra support.

Like reality shows for the entertainment of others I am often given extra challenges and problems to face.
New forms to fill in, problems at school, fighting for transport or services, juggling appointments, lack of sleep, challenging meltdowns, or dealing with change: I am expected to handle these with patience, grace and professionalism as if there is some major reward to be gained from it all. I wish there was a reward.

Like reality TV not all my colleagues are actually for me.
Unfortunately in the current climate of cuts to services families that should be supporting each other are actually having to fight against each other for school places, funding or access to services. It is often a case of every man for himself when in fact this is not good for anyone. Sadly not all the professionals working with my children like me either. I am actually ok with that as long as they support my child. Some of the professionals I don’t actually like either!

Like reality TV we are watched and then forgotten.
Professionals visit, or see us in a clinic or attend a meeting about my children then the second we are ‘offline’ nothing seems to happen. We are yesterday’s news as they have long waiting lists, too many clients and not enough resources to go around.

Like many reality TV stars my name and face are now familiar to more people.image
There is a certain person who holds a pretty major role in our education department. Apparently he knows my name well now. I can’t imagine how that is! My children’s Head Teachers know my name well as do many Heads of departments and clinics.

Perhaps the reason I have little interest in watching reality TV is actually because I live it enough daily.
Or perhaps my life has enough drama, characters, emotion and challenges without any need for more.

Just in case you missed it earlier I had lasagne, salad and home made chips for my tea tonight!

Hundreds of vulnerable Lanarkshire patients now left without a dentist

Two and a half years. That is a long long time to be working on one basic skill. Yet that is exactly how long it has taken my severely autistic son to get to this stage.
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To let a dental hygienist put a toothbrush in his mouth.

Now that two and a half years worth of work is about to be undone overnight by the National Health service and cuts to the special needs dentistry service in Hamilton.

My son, and my daughter, are among hundreds of vulnerable patients who used the only public dental practice in Hamilton based in Douglas Street community health clinic which opened in 2010 at a cost of 4.6 million pounds. Almost all of the patients using the clinic are unable to access other local dentists due to having learning difficulties, complex needs or autism spectrum disorder.

This week staff at the dental clinic were informed that the clinic would be closed within weeks and all patients transferred to other clinics. To date patients have not received news of this but appointments for treatment are already no longer being booked.

My children, who both have autism, have been attending the clinic for over two years. For Isaac (pictured above) who is non verbal and also suffered from the genetic condition Neurofibromatosis type 1, it has been a long and drawn out process to even get him familiar enough with the building and rooms before he would even enter the corridor the dentists were based in. Due to his complex needs any dental treatment would likely require a general anaesthetic at the children’s hospital so it was of vital importance that his oral health was checked frequently. Isaac is unable to communicate pain and has severe sensory issues making tooth brushing a real struggle. The Douglas street clinic arranged for frequent visits for Isaac to build up his understanding and tolerance of the dentist and used a number of strategies to finally build up his confidence to allow a familiar dental hygienist to get a tooth brush inside his mouth. Appointments were never rushed and photographs of staff, the rooms and equipment were taken to help Isaac become less stressed.

It is patients like Isaac who will now be left with no local dentistry service in Hamilton as a result of theses cuts.

The next nearest clinic for Isaac is four miles away in a building he is not so familiar with and where his current dentist only works one day a week. His wonderful dental hygienist however will be located out with South Lanarkshire altogether and Isaac will no longer get to see both familiar staff in the same location. For Isaac this will mean returning to the same stage he was at over two years ago when he would not even leave the car never mind enter the building! It could be another two years or more before he feels able to see another dentist,

By which time who knows what damage will have been done to his oral health?

Isaac’s twin sister, Naomi, used the same dentist this week as an emergency to have two teeth extracted. Naomi also has autism and has significant struggles with eating and drinking. She reacts acutely to pain and as a result of a wobbly tooth she had refused food and drink for two days prior to contacting the surgery. The staff were familiar with Naomi’s anxiety and were able to help her relax and cope with what was a very traumatic experience for her. All this was due to the fact she sees the staff so often and they have taken the time to get to know her and understand her. Now with these new cuts all this has been lost.

No other local dentist will agree to see either of my children due to their complex needs. 

Patients will receive formal notice of the closure next week but there has been no consultation with staff or patients and no time for transition which is so vital with vulnerable patients such as my children.

How can the NHS close such a vital service to the most vulnerable in society?

I have no idea. Right now though I am very worried about the oral health of both my children and that of the hundreds of other disabled patients who used this service. And I am angry that the fourth biggest town in Scotland now has no special needs dental service at all. 

I am glad I took this photo today. It could be the last my son gets to see a dentist for many years to come.

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How a church changed summer for one special needs family

 

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One email.

That was all it took.

A lot of courage but just one email.

Last summer was so hard and I knew I could not face it again so I swallowed my pride and dropped my Church office a note.

‘Could anyone help me out?…’

They responded quickly. They responded lovingly. They reached out and changed my entire summer.

A few weeks before the schools broke up I was asked to meet with them. They had ideas and I had ideas and we discussed simple ways people, many we hardly knew, could help us through the challenges of seven weeks holiday with two complex needs children.

I suggested perhaps one meal a week that I didn’t have to cook or prepare. They went above and beyond and hand delivered up to three meals a week, some of them arriving still hot and ready to be served. Roast chicken, bolagnaise, curry, home made cakes, puddings, side dishes and sometimes even a starter too! That someone would take the time to buy ingredients, cook a meal and deliver it just for us is truly overwhelming. Every little pea, or grain of rice shared spoke of love in action.

It was suggested that people could sit with my children to allow my husband and myself an hour for a coffee. One hour during the holidays would have been amazing but once again they went one step further and my children looked forward with excitement to the two ‘best babysitters’ who came once a week for a couple of hours whatever the weather. Two hours out of their week but that time to me was like a wave of respite and sanctuary in a stormy ocean. It also had the added bonus that every Sunday my children ran to the two woman, desperate to see them again and connect with them even more. Every minute of time spent together sowing seeds of love that will change both my children and the precious ladies.

imageAnother couple invited me to bring the children to her house one day. Neither of us were to know it would be the hottest day of the summer and the children had a wonderful time in a paddling pool (well my son preferred a plastic crate!) and watering plants. Precious memories for me, the children, but also for the couple who also enjoyed a wonderful day shared with friends. My children were able to be themselves without imagepressure or stress and their needs almost disappeared as quickly as the water did from the paddling pool when my son decided to tip it out! One day; a million memories made.

I mentioned at the meeting that there was one day I could not even begin to face that summer. It was a day I had dreaded for months as I could see no practical solution in sight. I had a very important hospital appointment to attend in a hospital miles from home that would take hours. Due to the treatment I needed it was not possible for the children to attend. The appointment could not be cancelled and I had no idea how I was going to do it. In stepped the church once again with a plan. What did my children like doing? Where was their favourite place to go? What do they like eating? And so, with tears in my eyes, a plan was formed. My non verbal, severely autistic, lift loving son, would get to go on his favourite lift tour on a train to the city with three adults to support him. I would provide nappies, clothes, money and anything else and they would provide the manpower. Meanwhile my autistic, nervous, selective mute daughter would be looked after at home in the comfort of her own surroundings to keep her anxiety at bay. How do you ever replay people for giving you something like that? It would be no exaggeration to call them angels.

imageIn among this I received texts of encouragement, prayers, hugs and someone even delivered nappies that they saw advertised for free on social media and thought about me and my son immediately. In fact I felt so encouraged I began fundraising to build my children a sensory room and with the help of the church all the funds were raised within just four weeks. We are currently building that now.

This summer has been so different to any other. For the first time I have not felt isolated, forgotten or alone. My church changed summer for my special needs family and I can not thank them enough.

Matthew 25:40 (NIV) “The King will reply, ‘Truly I tell you, whatever you did for one of the least of these brothers and sisters of mine, you did for me.”

When you don’t feel ‘enough’ as a special needs parent

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By 4pm the panic was setting in. Later afternoon is the time it mostly hits. I begin to think about dinner, cleaning up, baths, stories, and hopefully bedtime, and I realise yet another day has passed and things haven’t changed. When my children eventually settle to sleep my mind will run through all the missed opportunities, all the forms I never quite had time to fill in and all the moments I left my children to entertain themselves. Did I do enough today to help them? Did I do any of the exercises the physiotherapist told me I should? Did I ensure my daughter had her insoles in to correct the turn in her feet? Did I teach them anything or encourage any social skills?

Even if I did something, was it enough?

If I read my children’s speech reports I am reminded of all the times today I forgot to use pictures to reinforce understanding, and why do I suddenly remember all about makaton signs the second my child has fallen asleep?
Then I remind myself I am not a speech and language therapist. Even more important I am not MY CHILD’S speech and language therapist. I am his mum. I can never be ‘enough’ for his speech and language development as that is not my speciality. So I could do more! What parent can say they honestly do all the exercises with their speech delayed child all the time?

If I read my child’s physiotherapy report my heart sinks. Once again another day has passed and we never did those leg strengthening exercises she hates, or invented games that required rolling. When I was busy cooking I noticed she was sitting in that ‘W’ shape again and I left her too it. I never did enough. Actually I don’t think I have ever done enough to satisfy her physical needs. I feel guilt about that daily but then I am sure all parents feel like this sometimes? Maybe it is just me?

I left my non verbal son to watch videos on his iPad today. Not the most ideal thing according to therapists I know, but sometimes I just can’t do it all. I even put my two autistic children in the car and went somewhere today without first reading them a social story about it, showing visuals and going through the route on google street maps! Oh dear, no brownie points for me today!

The fact is they survived. I survived. We lived to see another day, and yes I will always feel guilt at what we didn’t do in terms of therapy or research or exercises, but in many other ways I was more than enough for my children today.

They had more than enough of my time.
They had more than enough to eat and drink.
They have more than enough toys and technology.
They have more than enough clothes to wear.
They have more than enough access to medical and educational support.
They have more than enough love.

Fellow special needs mum, remember this: never let any professional make you feel less than enough. Never let your child’s struggles make you feel less than as a parent. You ARE enough! Your love, encouragement, support and dedication WILL be enough. Did you make it through another day? You were enough today and you will be enough tomorrow.

Never ever forget that!

This post first appeared here.