Christmas for Autistic Adults: What is it really like?

Three weeks ago my husband received a detailed written report which stated clearly that he was indeed autistic. Of course he always has been autistic but as this is his first ‘official’ Christmas as an autistic adult I thought I would dedicate this special blog to the millions of autistic adults who inspire me, encourage me and motivate me to do the best and believe for the best for my two autistic children always.

I have to be honest and say both my children struggle with Christmas and I wondered if that got easier as a adult.

I asked Lisa how she manages Christmas both as an autistic adult and a parent of two children with autism.

I love Christmas and spending precious time with family. Family that I’m comfortable with. I love the events we have over Christmas but at the same time seeing people I have not seen in a while can fill me with anxiety.

It’s like I try so hard, too hard for it to be perfect. And that’s when my obsessive behaviour kicks in. I have to have everything looking just right. I want to attend so many sensory related events with my close family, the ones I’m comfortable with. When they don’t share my enthusiasm it brings me down.

I like to have set people around me and if they aren’t, it makes me anxious.

So as much as I love Christmas and everything that goes with it, i am often accused of trying ‘too hard’. Trying too hard to organise everyone, and pleasing everyone. I build myself up and sometimes I get overloaded with it all.

Social expectations and anxiety was something Chris from (http://autisticnotweird.com) also touched on too:

As much as I love Christmas Day (and speaking as a practising Christian too), it’s surprising how little I love Christmastime. The day itself is usually wonderful, but it’s preceded by a boatload of expectations- some of which you can’t match, some of which are unclear.

Worst of all is the expectation that everyone MUST be happy in the run-up to Christmas – including those with mental health issues. And not only that, but you must express that happiness in very specific ways. (Even on the day itself, it’s a time when getting drunk at midday is seen as acceptable but if you check Facebook to see your friends enjoying themselves, you’re being “antisocial”.) And having to do a hundred things “because it’s Christmas” has never struck me as a good reason to make yourself stressed- honestly, I’d rather celebrate Christmas in a way that helps me to access the beauty of the season rather than the social expectations. I’m pretty sure that’s what Jesus wants too.

Social events can be a struggle for many with autism at any time of year but the extra pressure of so many events can be overwhelming even as an adult. I love how Nikki from http://www.spectrumgirls2.com describes the after effect of so much socialisation as a ‘social hangover’ as this is something I see in my own kids regularly.

I do love Christmas, I think it’s magical and it reminds me of fond memories when family all got together when I was a child. I must admit I do get very overwhelmed with it all as there’s a lot of preparation required on top of being a very busy parent carer.

I find the shops so busy this time of year, music, crowds, lights and I try and avoid taking my girls into crowded shops as many people don’t realise I’m having my own sensory overload as well as trying to cope with both my girls getting overloaded. I do a lot of online shopping. With events like Christmas fairs, nativities, meals, I will cope during the event but will feel emotionally drained afterwards, I often need to go and lie in a dark room and find it difficult to talk after busy events. I’ve heard this being described as almost like a ‘social hangover’ amongst adults on the autistic spectrum. I do a lot of avoiding if I find something quite heavy going, I’m not keen on the wrapping of presents so I do put it off a lot! One of the more unusual feelings I get every Christmas time is a slight depressed feeling of ‘fear of missing out’ which is something that I’ve only just recently found out about. It’s a feeling that my children are missing out on experiences such as visiting Santa, etc but then I have to take a step back and think that experiences like this are not always positive due to my youngest having a fear of Santa, we have to do what is in their best interest.

Helen from http://www.lifeandasc.com echoed some of those same thoughts:

I love Christmas but in small measured social doses (I prefer to limit social events to 1 or 2 over Christmas). I have a set routine for Christmas . In fact the way we decorate the tree and the meal I cook is the same since I was about 10. The hardest thing for me is present giving – I am bad at keep a surprise or waiting till Christmas to open things. For me the greatest thing about Christmas is the ability to stay at home without having to do much – as I tend to use it as complete downtime.

Surprise presents was something Nigel struggles with too:

I’m not a big fan of Christmas. I find it stressful, it’s hard to do the weekly grocery shop when everything has moved around. The whole pressure to socialise, shops being busy, roads full of traffic and the same old songs every year! I’m glad when it’s all over. I much prefer people to give me vouchers or money so I can buy what Iwant when Iwant it and not have to pretend what they have chosen is anything I even like!

I went on to ask Lee if he had any coping strategies that worked well for him:

Ear plugs/defenders, regular breaks to a quite area that others know are out of bounds (safe area/place) try and know structure of the day in advance like a timetable and also knowing who’s coming.

Which leads me nicely to the hope that Matt had for me:

As an adult I find christmas not to much of a problem to be honest, it makes a good excuse to drink and throw money up the wall lol. When I was younger it was a totally different storey though…

I hated the change of routine, things happening on different days, people turning up, tv programmes being cancelled,being so excited about the presents I was getting and staying up all night being sick and then being sick again when I didn’t get what I wanted and working out there was no such thing as Father Christmas and then feeling compelled to tell every other child I saw!

As I expected some autistic adults actually look forward to Christmas and I really hope that one day what Riko from http://www.dragonriko.wordpress.com thinks will be true for my children too.

I love Christmas and having loads of decorations, loads of presents, going shopping, going to parties and having people around.

As I debate whether to put a Christmas tree up or whether this change will once again be too much for my children I am filled with hope that while they will always have autism they may actually one day love putting their own tree up for themselves.

Thank you to all the autistic adults who not only helped me write this but give me hope daily. I hope by sharing your personal perspectives it helps more people understand and accept you all and makes the world a little more tolerant both for you all and for my children too.

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Ten Seconds That Prove You Should Never Underestimate A Non-Verbal Autistic Child. 


People don’t expect much of my son. 

Speech and language therapists have all but given up on him, encouraging me to just accept he is non-verbal with limited understanding.

School take him on ‘environmental excursions’ rather than reading and writing because…well he can’t hold a pencil despite having been in school for four and a half years so he is never going to read and write is he?

The learning difficulties mental health team wrote to us explaining his challenging behaviour and long spells of screaming are just part of his complex diagnosis and are unlikely to change.

The public looks down on him in distaste.

Children his own age mock him in parks and soft plays when they see he can’t talk and is still wearing nappies.

Even as his mum I sometimes find myself wondering what the future holds.

It is easy to understand why. My son has a long list of diagnosis all of which are life-long conditions. He development is years and years behind what is ought to be and he requires support for all his personal care. He is a non-verbal severely autistic 8 year old who is still very much living in his own world. 

Well that is what I thought too. That is until I happened to turn my iPad video recorder on this evening while he was playing with his iPad. What I captured changed everything.

He had been handing me his iPad on and off for the last half hour. He was pressing the ‘google’ app wanting me to type things in to let him scroll though images. It was exhausting trying to guess what he wanted to look at with no eye contact, no words to tell you and no clues. In the end, frustrated myself, I handed him the tablet back and said ‘Isaac google something?’ I never for a minute even thought he would understand let alone google something so incredible it had me in tears:

He clicked on the search button and within seconds he pressed the ‘i’, quickly followed by ‘s’, then without hesitation he pressed the ‘a’ right beside it twice, before pausing for a few seconds then finishing his search with a ‘c’. In total it took less than 10 seconds for him to prove you should never underestimate anyone!

He just typed out his own name and I had no idea he even knew it let alone how to spell it!

The speech therapists may be right about him not speaking but he clearly understands far more than they realised.

School thought he would never be able to read and write…well he may not be able to hold a pencil cold but he just wrote his name using a keyboard on an iPad so who know what else he may be able to type?

The learning difficulties health team may be right about his behaviour being part of his comprehensive and complex diagnosis but what if so much of it is frustration at understanding but unable to communicate back?

Maybe this ten second video may help the public see that you can not judge anyone by lack of speech or lack of eye contact or lack of social skills. 

It only took my son ten seconds but in that ten seconds he has proved to so many that we must never, ever underestimate anyone, especially those with non verbal severe autism.

Does my son still have difficulties? Absolutely. Should I ‘not expect too much of him’? Never!

Behind the flapping, you tube on repeat, screaming exterior is a brain hard at work piecing things together in his own way in his own time. 
People don’t expect much of my son: I do. He just showed me why.

Why is it so hard to hear what you already know?

imageSometimes you already know something. Your mind has already gathered all the facts and knowledge and came to its own conclusion. Circumstances have been leading up to things and you *think* you have it all worked out.

That is until someone else says what you have been thinking out loud. Then suddenly your world crumbles and you go to pieces, even though you kind of knew it anyway!

In one of our many meetings this last week a professional who has seen my children regularly for over six years voiced out loud my inner thoughts on the subject of my sons inability to speak. Isaac is now six and a half. And he still has no speech. He makes noises, he screams, he takes me by the hand to things he wants, and now he is older he sometimes just helps himself. He has only been pointing for around a year.

I swallowed hard and asked her for her honest opinion. “Will Isaac ever speak?” I *thought* I was ready for what she would say. I already know deep down that the older he gets the more unlikely it is he will talk. I live with his frustrations and anger everyday and hold him while he cries every night. I celebrate all his efforts at communication in every form yet still long to one day hear his voice. But the realist in me knows that time is passing and he still has yet to master the tiniest of words that babies less than a year say with ease. We haven’t had the ‘ta’ or ‘hiya’ or even the basic ‘goo’ and ‘gaaa’. We have no waving goodbye or clapping in glee. Eye contact and joint attention that comes naturally to the youngest of children is still a mystery to my six-year-old. I am not in denial.

Yet when she told me my boy is unlikely to ever speak to me it still broke me.

Why is it so hard to hear what you already know?

Next month marks the three-year anniversary of his first major diagnosis: Classic autism with global developmental delay and severe learning difficulties. He had only recently mastered walking at that point, had no language and was very much locked in his own world. We had been told he had autism since he was 21 months and had yet to meet any professionals who disagreed with this in any way.

Yet on the day we took him to that clinic assessment there was still a tiny part of me hoping everyone was wrong. My world fell apart when I left that appointment hearing what I already knew spoken back to me by someone else.

Isn’t it strange how hard it is to hear someone else say what you already know?

Maybe when no-one else confirms it we just try to somehow forget about it? Maybe we don’t really face our own worst thoughts? Maybe the reality of someone else saying it just makes us realise it is true after all. But then they add to the pain and harsh reality by sending it to you in writing. And we find ourselves mourning in our darkest moments all over again.

I sort of knew deep down there was more going on. He had other ‘symptoms’ children with autism didn’t really have. But I never wanted to hear someone mention that out loud. At least not to my face. Yet one day five months later we heard the doctor tell us our baby also had neurofibromatosis type 1. Combined with his other conditions (and we may yet hear more as we wait for full genetic blood results to come back) the future is not the brightest for my son.

I know he will need care throughout his life. I know it is unlikely he will ever drive, own a house, have a successful career or go to university. But am I still not quite ready for someone to voice those things to me.

Why is it so hard to hear what you already know? Because it means you have to finally face up to it. It means others know your worst fears and concerns. It makes you vulnerable. It brings emotions to the forefront you would rather others never got to see. It is like stealing away that tiny shred of hope you held on to for dear life.

Someone asked me how the meeting went. I told them we were just told some stuff we already knew. They looked at me in wonder as the tears ran down my face.

Why is it so hard to hear what you already know?

It will get better, I promise

“Blood mummy. Blood mummy.” she cried just as I was trimming her finger nails.

The tiniest nick. But lots of tears. And plenty of blood.

If there is something sure to get my baby girl upset it is blood. She becomes hysterical at the sight of it. I just know it will be one of those stories I will hear repeated and repeated and repeated and will never be allowed to forget. But in the meantime I have to clear up blood that is pouring like a river and comfort a little girl who has gone into overdrive.

So dad wraps her finger in some kitchen paper. And I get some plasters.

“No mummy, not a plaster” she screams.The sight of the first aid box just made her ten times worse.

She doesn’t want a visual reminder of her pain. She wants it gone. She doesn’t want anyone else to see her wounds. She just wants to get better. I don’t have time to sit and explain or prepare her for the fact a simple plaster will make it all better. I even try a children’s plaster with lovely pictures on. She pulls the finger away dripping blood everywhere.

And the tears keep coming as fast, if not faster, than the blood from her finger.

We don’t do unpredictable very well in our house. We do routine, structure, preparation, This isn’t as much the pain that is causing her stress this is the look of blood, the not knowing what we are doing, the people being too close to her, the mass of sensory feelings her body is getting bombarded with. This is fear. This is the thought that things will never ever be better.

Plasters don’t work. So mummy held her 5 year old baby in her arms and firmly held kitchen towel over the small but highly distressing wound. To her this is massive. And I understand that.

“It will get better, I promise.” I whisper.

Slowly but surely it does of course. But her emotions and heart beat and adrenalin need to catch up with reality. That takes time. The comfort of being held and spoken to softly help. She is holding onto that promise. Though she has no visual sign of the reality she is trusting.

“It will get better, I promise.”

A little cream, a firm wrapping of kitchen paper and some micropore tape to hold it down does the trick. For now though she knows she is different. She feels that everyone will stare at her. She feels emotionally vulnerable and ready to cry at the slightest thing. The pain is still raw. Her mind can not yet think of anything else other than that cut. Everwhere she looks is obvious reminders of the pain. Drips of blood on her pyjamas, on the seat and on mummy’s clothes. Drips that right now seem massive. But to someone who has no knowledge of the situation they may even go unnoticed.

I remind her clothes can wash. Chairs can be cleaned.

“It will get better, I promise.”

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Two bedtime stories later and a little more reassurance and she was asleep. Tomorrow that little cut will be much better. In a few days time it will seem much less dramatic. The memory will be there of course. The trauma will still be there too. But in time that will fade a little. As I promised her, it will get better.

And I can promise you things will get better too.

Sometimes life is like tonight and suddenly something traumatic and overwhelming happens. And you may not be prepared. You child got diagnosed with autism, your marriage ended, you became ill, you lose your job, your landlord wants to sell your house, there is a death in the family.  Life has a way of throwing things like this at us. And just like my daughter when she saw that sight of blood, panic sets in.

Although my daughter is too young to voice it, she was probably thinking, like we all do,

‘How will I ever get over this? How can I stop this from happenin?. Can someone help me? Please just let this stop!’

It is ok to feel like that. It is natural.

Let people help. The right person can come along with that first aid kit, and that reasurring loving voice and tell you,

“It will get better, I promise.”

At first you see the plaster, that visual reminder that something is wrong, and you might panic more. You think everyone will see your pain. You feel vulnerable, insecure, broken. We all feel like that at times. It is ok to cry. When it all seems temporarily overwhemling crying is instinctive. It is part of the shock release. Sometimes it is the pain that is the issue and other times it is the thought that everything has changed, the not knowing what to do now, the sensory overwhelment of it all.

In that period of being wounded, of needing comfort, of being confused and emotionally vulnerable we all need the security of resting in someone’s arms. In my times of need I am so thankful for the loving arms of my Father God. Of being able to find refuge in the shelter of his wings. But we need people too. Friends to comfort us and keep reasurring us that it will get better. We need helped. Supported. Loved.

You may have to go through a period like my daughter of knowing you are different. I know when my children were both diagnosed with autism I suddenly realised how different life was for me. I thought my ‘wound’ was so obvious to everyone. I felt the pain and hurt would never go away. It felt like everday I was reminded of the fact my children were not like others. I felt like everyone would see that ‘cut’ and ask all about it. I seemed like I was dripping reminders of autism everywhere I went. I felt sad, alone, confused, vulnerable.

But time heals so well. I rested. And one day the wound was no longer raw. My children still had autism, just like my daughter still had that cut. But the diagnosis day became a memory. Sometimes, like Naomi, I want to replay it and talk about it. And that is ok. We just need to find the right people to listen. But things have moved on. When Naomi wants to talk about the day her finger got cut I will listen and comfort once again if the momory restirs emotions, but I will be reminding her that it got better.

She can’t keep that bandage on forever. It would not be healthy. I can’t keep going back to diagnosis day either. It happened. And things changed. But you know what? It got better. I grew as a result. I learnt, I became more compassionate, and I found new friends along the way too.

In the year I have been blogging; In the 13 months since we found out my son and husband have an incurable tumour condition; in the 18 months since Isaac was diagnosed as classic autism, global developmental delay and pica; in the 3 months since my daughter was also diagnosed as having autism; in the 4 months since we found out Isaac is visually impaired: these words have been my comfort, my strength and my hope.

It will get better, I promise.

Let them comfort you and bring you hope today too, whatever you are facing.

It will get better, I promise.

It doesn’t take much

Life, for me, is a very delicate balance.

The balance between meeting the needs of my very different 5 year old twins. The balance between being a good mum and also being a good wife. The balance between keeping my house clean and tidy for the many and varied professionals who visit but also allowing my children to be free to play and be at home. The balance between trying to move my children’s development onwards but also being very aware of thier need for sameness and the huge anxiety that change brings. The balance between encouraging my son to speak when he has no language but also facilitating him by providing a means to communicate that does not involve speech. The balance between wanting to teach my children social rules and conforming to social norms but also allowing them to be the unique autistic individuals God made them to be.

My selfish desires for quality photos of my children on the wall, to celebrate Christmas as much as possible, to see them in nativity plays and shows and to take them to interesting and educational places like museums and castles, to go out for family meals sometimes and visit family. But balancing that with the fact neither of them do social activities, they have serious sensory issues that make going out a challenge,what is interesting to me is maybe of no relevance to a 5 year old who is really just a 1 year old developmentally, accessing places with a disability buggy is a major challenge, and sometimes the best thing for everyone is just the safe haven of home.

It’s a fine balance.

And it doesn’t take much…to upset that balance.

Somedays we get it right. And others we don’t. For example:

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Since he started school in August and started wearing a red jumper as part of his uniform Isaac has insisted he wears red jumpers every day. And every weekend I try and break some of this rigidity by once again attempting to put on other clothes. He screams, bites, cries and becomes very distraught until the battle becomes more than it needs to be. Sometimes as a parent you need to be willing to lose the battle in order to win the war. So the red jumper goes back on.

It doesn’t take much …for calm to be restored.

But some days you really would prefer he wore something else. Like the day I decided to try and take the children and my mum to a photo shoot. A huge risk but something that was a dream for me for years. But also a major hurdle for the children. That delicate balance between my desires as a mum and thier needs as special children. Compromise..we will book a photographer used to dealing with autistic children and take items with us the children really love. So Elmo DVD and DVD player, wooden farm set and Naomi’s favourite cuddle toy of the day, and biscuits! We only lasted 30 minutes in the studio but I got my hearts desire:

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It doesn’t take much…to make my dream come true.

The balance between both dad and myself longing to attend Isaac’s first ever school parents night with the fact that both children would be upset at the change of routine. It would take a military operation to prepare them for the fact gran would be here at dinner time and the need to have a dinner both children and gran would eat, prepared and ready to serve, prior to Isaac having a meltdown because he sees someone cooking and Naomi screaming ‘I don’t like that!’ Oh and not fogetting a 26 mile round journey just for a 20 minute meeting with his class teacher. But the report and pictures and video clips we saw were worth all the effort it took.

It doesn’t take much…to make me a very proud mum.

When we were out at a local shopping centre and for the first time Naomi asked to see Santa. To see her overcome her anxiety and sensory issues to walk into a dark grotto and talk to a stranger. And to hear her being asked a question I knew she may not feel confortable answering. ‘What would you like me to bring you for Christmas Naomi?’ I gulped, held my breath and waited to see how she would respond. “A toothbrush please!”

It doesn’t take much…to please a child.

When we finally got a letter in the post with details of a proposed respite plan to start in the new year. Once again we had to break the children’s routine of going to church every Sunday to take them to a new centre to meet new people who hopefully will look after them both for a few hours once a fortnight starting next month. I could have found myself dealing with two anxious, upset and screaming children. Instead Isaac took great delight in exploring the windows of the room and examining close up a mural on the wall. And Naomi sat and drew a picture with beautifully lined up ordered pencils. While I filled in forms in duplicate giving every little detail about my children and life imaginable. It isn’t easy admitting you need a break. It isn’t easy dealing with disability times 2, 24 hours a day, whilst trying to keep your marriage strong and your bank balance healthy. Knowing there is a chance of a little break next year spurs me on though.

It doesn’t take much…to give me hope.

Naomi being given the nursery teddy bear to bring home and look after for a day. A box full of cuddly toys already but there is something wonderful and special about this nursery bear and all that they sent home with it. So ‘Sarah’ came out for lunch with us because her brother was having a school trip today.

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It doesn’t take much…to make a child feel special.

Recieving an e-mail from Romania from someone who reads my blog. Knowing someone has been encouraged. Knowing you might have got the balance of humour, reality and the sheer joy of raising two wonderful children with special needs. Just knowing that someone cares. Realising that there are other families facing the same delicate balance of raising special children in a society that does not always celebrate them. Knowing you are not alone. Appreciating the time and effort it took someone else to contact you.

It doesn’t take much…to touch another life.

Life is a very delicate balance for us all. Raising special needs children just makes that balance a little harder to achieve some days.

I’m thankful that tomorrow is a new day!

As well as blogging I have been trying to keep a little journal of thankfulness recently. Some days it is very easy to think of plenty to write and other days I have to really dig deep to see the good that has happened that day. But I can now look back at almost a month of written thoughts of thankfulness and I wanted to share some of the things I have been so grateful for and the little tiny seeds of progress that give me hope for a brighter future.

For those of you who haven’t read previous blogs or my history it will make more sense to you to know that I am a mother of 4 and a half year old twins conceived through IVF after a ten year struggle with infertility. Both twins are on the autistic spectrum and one of them is diagnosed severely autistic with global developmental delay, severe learning difficulties and neurofibromatosis type 1. He also has eye problems. Both are still in nappies and one is completely non verbal. During the last month we received difficult news regarding my son’s eye sight, my daughter has been referred for further tests regarding bladder issues and I have been struggling with my own health problems. We are also in a battle with the local authority regarding my sons future education. It is in the midst of all this that I want to share some of my notes on thankfulness. Because it is in the midst of trials that we most need to have hope and stay thankful.

So here are a few excerpts from my thankfulness diary from the last month:

I am thankful for the NHS and for people who choose to work unsociable hours to be able to treat myself and my children.

I am thankful for friends who call, text or e-mail and just say they are thinking of me.

I am thankful I can see my children smile.

I am thankful my son went 24 hours without biting himself today.

I am so thankful my son allowed us to measure his feet in a shoe shop for the first time ever without screaming. This is progress.

I am thankful for a husband who sees all my faults but still chooses to love me and be with me. And thankful that I have a God who is just the same.

I am thankful for the fact my son appears to have good vision out of one eye and has no sign of tumours on that eye either.

I am thankful for transport to be able to make appointments even when we have snow in Spring!

I am thankful to know what is affecting my children and causing them to behave the way they do. Understanding brings knowledge and helps me focus better on how to help them and pray for them.

I am thankful my son said ‘mum’ for the first time. He isn’t saying it consistently yet but it WILL come. Something like this gives me hope.

I am thankful I can hold my children at the start of every day and at the end of every day. Whatever happens in between I can still hold them close and kiss them and whisper “I love you” in their ears.

I am so thankful for my daughter who gets so excited over the little things that others overlook. Her thrill at getting a new dvd makes me thankful for her simplicity and gratitude and love.

I am thankful I got to use the bathroom in peace on one occasion today.

I am thankful for people who have walked similar paths before me and who are willing to guide and help me through challenging times.

I am thankful today for a warm comfortable house, a bed to sleep on and food in my cupboards. 

I am thankful for a God who hears my cries and knows my inmost thoughts.

 

I think being thankful this last month has really helped me cope when things have become challenging at times. On the days when my son screamed for hours, bit himself until he bled and slept for only a few hours. On the days when doctors reports seemed bleak and the children ate very little other than chocolate. On the days when the snow kept falling, the bills kept coming and the pressure seemed immense. On all those days I tried to be thankful. And I then found myself finding a shred of positivity, a glimmer of light and a ray of hope that allowed me to face another day and look at life a little differently. Even if all I could write was:

I’m thankful that tomorrow is a new day!

 

 

I just heard him say ‘mum’!

I’ve just had my mothers day present 4 days early. And it was priceless! My 4 and a half year old just said his first word and it was ‘mum’. Excuse me while I cry.

It’s not like it’s the first time I have heard ‘mum’ said today. His twin sister says it more times than my little ears can cope with some days. But this is the first word Isaac has said. I can not guarantee he will say it tomorrow, or next week or any time after that. But he said it tonight and that is something I will hold onto for the rest of my life. You don’t ever forget your child’s first word. And you especially don’t forget it when you have waited 4 years and 4 months to hear it. This split second will remain in my heart forever.

And the hope it gives me is incredible.

To get to this place Isaac has had learning support at home and at nursery, 14 months of weekly speech therapy, I have attended a four month course on how to communicate with my autistic child, and he has had daily one to one with countless nursery staff and other professionals. I have sang with him, read to him, played with him, prayed for him and did everything I could think of to help him. I have simplified my language and praised him for trivial things like ‘good sitting Isaac’, ‘good walking Isaac’ and ‘super waiting Isaac’. I have rolled balls to him for hours, ticked him to get a reaction, named all his favourite toys, whispered in his ears, stroked his hair and held him close. But most of all I believed in him.

Even though he has been making some slow progress recently I still wasn’t expecting tonight’s miracle outburst. Sometimes you just find yourself in a place where you continue on and wonder if any of what you have been doing is getting you anywhere. And then it happens: breakthrough!

And often when you least expect it.

Tonight was just an ordinary Wednesday night for us. The kids had been to their regular kids club for families affected by autism. Isaac went through his usual transition routine on coming home and the house was pretty calm. Dad started running a bath for the kids and I told them both it was bath time (Isaac’a favourite time of day as he just loves water!). Isaac understood the cue and began walking up the first few stairs to head to the bathroom. I followed behind and on the third step he stopped, turned, looked me in the eye and just said that magic word every mother longs to hear. “mum”. That was it. Nothing else. I could have kissed him, held him, never let him go. But that would have overwhelmed him. Instead I held his hand and we climbed together and headed for his favourite activity of the day. He was totally oblivious to the tears forming in my eyes and the faster beat of my heart. He had no comprehension of the miracle encounter that had just taken place. He was just happy to have my full attention and strip off and get in the water. That’s my boy!

Just two nights before this,when out in the car, his twin sister had asked, out of the blue, when her brother was going to get better and not have autism any more. And despite the fact she caught me unprepared (are we ever really prepared for the questions our kids ask?) I did my best to reassure her that her brother would always have autism but he could still learn to do lots of things she can do like saying words, playing with toys and going to school soon. With her usual 4 year old faith she replied “He will talk to me one day mummy. That’s what children do.” And then she went back to talking away about her favourite DVD characters once again. It wasn’t appropriate or important to correct her or break her faith. If she can believe her brother will talk, then so can mummy. So of course, she wasn’t even phased one bit by tonight’s miracle. She was expecting it so allowed her brother his moment of glory and then, like any child her age, took advantage of mum’s good mood and asked for extra toys in the bath! And the evening continued like any other.

Except something miraculous happened in my house tonight. We had a breakthrough. We reached a milestone. We shared a treasured moment. We overcame autism and neurofibromatosis type 1 and any other name you want to say my son has. He said a word…in context…with eye contact…with meaning. He touched my heart. He just called me “mum”.

Breakthroughs come when you least expect them. Never give up believing. Image