Just don’t ask my neighbours!

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Most of the time I am happy that people don’t know what really goes on behind my front door. I live in a quiet dead end street in an end terraced house with neighbours either side of me. Ordinarily that would be fine but I also have two children with additional support needs. Between them both they have diagnosis as long as my arm including autism, global developmental delay, neurofibromatosis type 1, anxiety, visual impairment, learning difficulties and a whole heap of sensory issues. One of the twins is non verbal.

Maybe one day I will tell my neighbours some of their issues. But right now I am having fun wondering what they might tell you about us.

The lady two doors down might tell you about the morning she saw me wave my daughter goodbye to nursery on the bus while she happened to look out her window just as my son was running down the street flapping wearing nothing but his red school jumper! If you are going to talk to my neighbours it may be best to avoid that one.

The previous neighbour to my right that moved out last year may not have been a good choice to talk to either. He might tell you about the time he caught my son standing at his camper van licking it clean! Thankfully he sold up and moved out a few months later so I might not hear about that one again.

Mind you the couple and their son who moved in after him may be best avoided too. They would only tell you about the screams they hear from my children most nights like they are being killed. I could tell them I am only cutting heir nails or washing their hair but somehow I doubt they would believe me.

The neighbours the other side are not the best choice either I’m afraid. They could tell you about the time they had friends over for a BBQ and turned around to find my son helping himself to the food while they were all busy chatting. Please, please avoid the wife! She was sunbathing one day and as she looked over her hedge she saw my naked son running along side the hedge with his eyes right up against the bush peering through it. I maybe should tell her he is visually impaired but unfortunately she isn’t, so she probably thinks the naked child requires more of an explanation. She hasn’t been sun bathing as much this year for some reason.

The elderly lady across the road could tell you a good few stories. Like the time she saw us manhandle our child into a taxi and wave goodbye to him and he screamed in sheer horror. One day I might explain it was a different colour car that day and he could not cope with but in the meantime it maybe best to keep your distance. She has also saw us a few time wave our hands in glee as the children left for nursery or school and I have a feeling she thinks we look too happy to see them go. There could be some truth in that some mornings.

When we moved into this street we were reliably informed that it was quiet and that there was very little movement in terms of people selling up. It was seen as sought after. We seem to have pleased the estate agents though as since moving in at least three houses on the street have changed hands. We must be a good influence I think.

I’m quite sure my neighbours wonder why my son always wears the same school jumper everyday. Or why we have so many ‘visitors’ who come for around an hour a time and then go again (Social workers, occupational therapists, speech therapists, physiotherapists). They are maybe suspicious of the plain white van that drops huge boxes to us once every two months (nappy delivery month), or wonder why we get our refuge collected once a week when they are on a fortnightly schedule (that’ll be those nappies to blame again!). If they knew where we were going they may wonder why we take the kids to hospital appointments so often or why if they come to the door it is always locked and the key hidden away (think back to the half naked child escaping). They may wonder why my son never talks to them or my daughter won’t look them in the eye. They may even wonder why they see me regularly carrying six year olds who are screaming and trying to bite me. They have no doubt not seen many parents hang out bedding that is half eaten before or hear a child so distraught because you dared peg an item of clothing out without the pegs matching. If they saw my weekly shop they may even judge us for buying only the same select few things every week. A balanced diet in this house means a biscuit in each hand sometimes!
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I’m not sure my neighbours have heard of autism. But I do know they have heard my children! If you want to find out about me please talk to me and whatever you do…just don’t ask my neighbours!

I’m still a mummy

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I watched the little girl shuffle across the floor on her bottom the exact same way my daughter used to do. So pretty, innocent and delightfully happy. I approached her mum and commented on what a wonderful way it was to get about. Mum didn’t seem so sure. The baby was only just over a year so I shared with her how my own daughter used to do the same and what a smart way it was to get about as it allows you to see where you are going and take things with you in your hands, both of which are much more difficult when crawling on all fours.

Mum seemed reassured when I spoke about how my daughter walks, talks, goes to school and is doing well academically. We smiled at each other, looked at each other and the conversation flowed. And then something changed. I mentioned, almost without realising, soon after, that my daughter has autism. And the conversation pretty much ended there. Any confidence and reassurance I had offered about her daughter seemed to vanish instantly. Somehow I wasn’t in a position to support or encourage because my child had some sort of disability. I am sure she probably just didn’t know what to say or felt awkward or maybe thought that somehow her daughter’s shuffling in the same way as mine may mean I was suggesting her baby may also have autism. Who knows. It just changed things the moment that word was said.

It isn’t the first time that has happened too. Neither of my children are potty trained and I find other parents avoid even talking about that when I am around. And some even find it strange if I offer to take their child to the bathroom if they require help. Maybe they think I won’t know what to do as my own children are still in nappies or maybe they feel it may upset me. Neither of those are true. When I mentioned to another friend how my son also loved being in a ball pool as a baby and still loves them now she seemed to want to change the subject. Maybe the thought my six-year old was still enjoying what her one year old likes felt weird. I am not really sure.

I sometimes want to say to people that just because my children have difficulties does not exclude me from the mummy club. I am still a mummy. My children still breastfed, had wind, were sick, went through teething, cried though the night, spat out solid food when they first tried it, learnt to sit and stand, walk and crawl and drove me crazy with noisy toys. They still pulled clothes out of drawers, fell asleep when I least wanted them too, loved throwing food from their high chairs and needed nappies changed at the most inconvenient of times. They were still children. And I am still a mummy.

The only difference is my children did these things at different times. I remember the breaking back pain of having to hold your babies hands to help them learn to master walking. It is just I was doing that with a heavier, slightly taller three-year old rather than a lighter, smaller one year old. But I still did it. Because even when children have a delay or a disability they mostly still have to go through the same stages of progress. They still have to master standing, balancing and confidence before they learn to walk. They still have to master sounds and listening skills and facial movements before learning to talk. It’s just my six-year-old got stuck somewhere when the one year old sailed through that. They still have to go through toilet training whatever age that gets mastered.

Identifying with you in your child’s progress does not mean your child has the same thing as mine. It just means my children are just as normal as yours. I still had to enrol my children at school. I even saw one take part in a nativity this week. And my children will still hate the sprouts for Christmas dinner like most other children.

I guess I just feel sometimes only going to things for disabled children, or ones with autism, or neurofibromatosis, or whatever, isn’t helping. It is often the only way we can access things and so I am all for making accommodations for families like mine. But it has the negative effect sometimes of making people think we are different. In some ways, of course, we are. In the community I live I would find it very hard to find another non verbal six-year-old or a six-year-old still in nappies for example. But I could easily find another six-year-old just like mine who doesn’t like doing what he is told, likes playing on an iPad and hates wearing a hat. I could easily find a six-year-old like my daughter who likes books and Thomas tank engine and baking cakes.

This Christmas please see my children the same as yours. Children with dreams and hopes and a bright future. Children who will wake up on Christmas morning to new toys, whatever they are, and who may end up playing with the box longer than the toy. Not because they have autism or developmental delay, but because all kids love boxes!

And just like every other mummy I want to make my kids happy. I want to hear them laugh and I want to have quality time with them. I want to be included with other parents too. Everyone is different but kids, disabled or not, are still kids.

And I am still a mummy.

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Because it never ends

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I woke up this morning. Once again it was far too early. One again the alarm clock never got a chance to ring as screaming became my wake up call. My mornings, like so much of my life, are very predictable.

In a few weeks it will mark six years of it being like this. I thought children were supposed to sleep through the night at some stage?

I guess that is one of the things about my children having special needs. The early waking never ends.

So to stop the screaming I dress him. In the exact same things he wore the day before. So it may be a school day but it really doesn’t matter because he wears the same jumper whatever day of the week it is. Sometimes I can shrug that off, laugh at it, even smile at the predictability of it, but other times it gets to me deep inside. We’ve been doing the jumper thing since August 2013. It is one of the hundreds of things we are ‘working on’ just now but getting nowhere. It just seems relentless. And sometimes pointless.

On a positive he has still been saying his first word ‘on’ that we spent an entire week learning last week at half term. It still isn’t fully pronounced but he is trying. And with massive prompts he is using it for the DVD player, the iPad, and his jumper. But like everything, it is all consuming, all encompassing; exhausting. I can’t let it go because if I just do things without having him try and talk I will be training him that there is no need to speak; no reason to communicate. So now we have started it has to continue. And if we manage to, by some miracle, add in a new word, it will be the same again. We HAVE to take every opportunity we can to help him. It’s just sometimes I would like a break from it all.

We’ve had some problems with the national oral health programme. Not surprising when the simple task of daily teeth brushing is a battle for both children. So now both children have to attend a specialist dentist every six weeks for ‘familiarisation and treatment’. For one of them that means dragging him away from the lift in the waiting room every six weeks. And sometimes that is just another battle that never ends.

It just adds to the myriad of appointments we have anyway; Eye clinics, paediatricians, clinics, home visits, school meetings, training courses, genetics, opticians, and regular GP visits. And unless we want them to have hair like Samson then we have six weekly hairdressers visits too. For most of these we are still struggling to get past the lifts and the automatic doors. Sometimes I could punch the person who invented such things.

I know, I know, this is my life, and I need to get on with it. Lots of folk have it worse. I know that. And I am not depressed. In actual fact I had fun tickling my son and watching lifts with him on his iPad at 4:30am.

It’s just that knowing that this is for life: Autism, genetic conditions, learning difficulties, neurofibromatosis type 1, developmental delay. They are relentless. They put stress on families and make everything seem massive. They add strain to marriages and test the patience of saints. They require more energy than the national grid can provide. They can’t be cured. I can’t walk away.

Forgive me for blogging in a negative way. Please understand I am not feeling sorry for myself. I am exhausted. I am surrounded by battles many of which I may never win.

I now understand why so many marriages struggle when there are children with special needs involved. I know understand why so many parents of children like mine are on anti-depressants. I now understand why so many are begging for respite.

The reason is this: because it never ends.

Come on son, I know you can do it!

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When you have a child who is seriously struggling you would expect therapists, teachers and support staff to do everything they can to help. You put your faith and trust in them. They have years of training and experience behind them and have skills that a humble mother couldn’t possibly have. You send your child to school believing they will push him, encourage him and motivate him to bring out the best in him. You are in fact handing over your most precious possession to them in the belief that they have the necessary skills to help them. They have expensive technology, highly trained staff, a vast array of agencies at their beck and call to support them and the facility to give my child undivided attention.

If only life was that ideal. The reality is that budget cuts, lack of interest and time restraints often mean that some children fall by the wayside.

So when my son’s school notified everyone that the speech and language therapists were no longer going to give my child one to one intensive therapy and direct support, when his individual education programme showed no signs of pushing him to learn to speak and was heavily leaning towards getting him to point and use some pictures, when even his legal support document was threatened with being closed I decided I had no choice but to show them what I believed my child could do.

It seemed impossible.

While the staff and professionals working with Isaac all have the luxury of a full nights sleep, I am functioning on a few hours a night and some night less. While they are entitled to regular breaks, have the support of other staff and get paid a salary, I am balancing life with two children with autism, have very little training and get paid nothing more for working intensely with my child. They can go home at the end of a frustrating and emotional therapy and forget about it. I have to wipe my own tears, internalise my own fears and deal with the heartbreak of knowing this is not just any child I am working with, this is my beloved son.

It may not matter to them if they never hear my child’s voice. But it mattered to me.

Just weeks before his sixth birthday, not having spoken any recognisable word for over a year and a diagnoses of classic autism, Neurofibromatosis and global delay, the odds were not on my side.

But I had to try. It helped that he took a sudden interest in hand dryers and hair dryers but could not work them. So during half term week I decided to do some intensive interaction with him to try and get one word. I found him one day on my bed pointing to the hairdryer. Now was my chance. I modelled the word lots and let him see my mouth. I said the word and then turned on the dryer. His excitement showed I had a motivator. So every time he went on that bed I got into the room with him and worked with him to say a simple word. One syllable, just two little letters, not much to ask. But a massive mountain for my boy to climb.

Here is what day 5 was like: he was trying so hard:

But I wanted to show he could actually speak. I want to prove to everyone involved it is worth continuing to teach him to speak. I want them to see he is worth believing in.

And here is day 7:

It may not be too clear but he certainly vocalised a sound not unlike ‘on’. It may only be for the hairdryer, but it’s a start.

I am exhausted, physically. mentally and emotionally. Some days this week I could have easily given up. But love carried me through. And it was so worth it.

Don’t stop believing. Every child has potential. Despite funding issues, staffing constraints and time pressures I refuse to let anyone stop believing in my son.

He has so much potential. And I intend to prove that. I just need Isaac to do this with me.

Come on son, I know you can do it!

Am I crazy buying my 6 year old a smart phone for his birthday?

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It seems the shop assistant thinks so. When I payed for the item and told him it was for a six year old’s birthday he gave me that ‘look’. You know that look that shows he thinks you are clearly deluded and should he be calling the doctor on you? I know that look too well.

So I am sitting here asking myself what is wrong with a smart phone for my six year old?

I KNOW he will love it.

He will be able to work it way better than some adults I know.

He will be able to teach others to work it.

It will amuse him for hours and I already know it will be the highlight of his birthday.

It has an incredible ability to help him learn.

It is portable so can be used in the car to keep him occupied on long journeys.

Provided we limit the amount of time he is on it everyday it should not cost us too much money.

He will be the envy of his school friends.

But most of all it will probably give me some quiet time where he will sit alone and play.

I will be judged. I know that. I am used to that. And the same people will also judge the fact he is also getting a CD player too. He broke his other one dropping it down the stairs so like all good parents we are just replacing it and saying nothing. No sitting on the naughty step. No time out. We just replace it because he liked it. He was so upset about it after all and no-one likes to see their child upset. I never even had him ask for a new one. He just knows he will get a new one soon.

So you probably think he is spoiled. And that I have more money than sense. Some people may even be calling me unkind things by now.

So what if I told you he dropped his CD player when he was at the top of the stairs because he had a seizure? What if I told you he hasn’t asked for a new one because he can’t speak?

Here is the CD player in question:

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It is designed to be played with by young toddlers. My almost six year old is so behind developmentally due to neurofibromatosis type 1, autism and global developmental delay that he is only just starting to play with toys like this.

And here is the smart phone the shop assistant was so shocked I was buying for a child his age:

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A baby toy!

It lights up, it plays music and it gives instant feedback. Just his sort of toy really.

It’s easy to judge when you don’t have all the facts.

Am I crazy buying my six year old a smart phone for his birthday? When you think he can’t speak, is still in nappies, can’t dress himself and still eats with his fingers…baby toys and toddler toys are exactly what he needs.

In fact here he is on his first birthday having no idea how to play with a toy he received:

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20140217-224411.jpg5 years later he would just love this toy again. I wonder if there are any keyboards with dancing drumming bears on sale…

The crazy thing was I threw out all his baby toys and now I am buying them again five years later. At least now he might play with them.

Have you any idea how excited I would be if my six year old actually asked for and was able to use a REAL smart phone?

Call me crazy but if that happened I would be right back at that store buying him one tomorrow!

There is more than meets the eye

 

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It is the first day of the new school term here and my daughters first ever day at school. I took the standard parent ‘first day back’ photos and posted them on social media. The usual comments ‘they look so smart’ ‘good luck’ and ‘have a great day’ all touch my heart.

There is so much that has gone into today, way beyond the simple purchasing of new school wear, shoes, washing and ironing uniforms and packing bags. For weeks now I have had to prepare these children for this major change in routine, even though it was previously familiar to Isaac. Seven weeks is a long time in a child’s life to get used to going out with the family, eating lunch at home and playing with toys and technology.

So my autism mummy mode took over and prepared social stories for Naomi, visuals for Isaac and lots of walks to Naomi’s new school even though it was closed. Both of them have books all about their summer to take into school. And we have read about Topsy and Tim, Biff, Chip and Kipper and everyone else you can think of starting school!

Isaac has a photo album full of stories and photos to share with his teacher. He has no other way to share his experiences from the last two months as he can not speak. I sat with him for days going through all the photos we had on his Ipad and having him point to the ones he especially liked. Then I sent them off to get printed. There was no surprises that the majority featured food! But it is his story and if he was able to talk these are the things he would want to tell his new teacher about. As his teacher is brand new to the school and only knows about Isaac from information the school has (assuming this has been read), I so hope someone will sit with him and take a few minutes to allow him to share his summer with them. This is as much about transitioning from home as it is to school. We are all in this together.

Naomi’s new school had given the children a summer scrapbook to do at home. The pages were blank which immediately caused Naomi huge anxiety. She needed guidance and instruction and clear boundaries and pages that could contain ‘anything about your summer’ where far too vague. So I helped her structure her ideas and we had a lovely time together as she drew her family, stuck down photos of some things she enjoyed and cut pictures from magazines. Once again I hope someone takes the time to get to know my daughter and puts no pressure on her to speak if she can not yet overcome her anxiety to do so.

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We hit some very real challenges when we found out that transport arrangements for taking Isaac to school were all changing. I sighed. If only the ‘powers that be’ had any idea how change affects my babies. For the sake of saving pennies they change contracts and providers taking no account of the needs of the children. How would they feel to watch their child bite himself, bang his head and run back inside the house when he has to meet a new driver and escort and see a new taxi? I bet their heart would break like mine. But I swallow hard and do what we can. Take photos of the people, the taxi, and his school. But still we have the screaming and the self harming. And all I can do is pray; pray that he might one day understand, pray for patience for these new people in his life and pray for a way to help my baby understand. And then I realise our fatal mistake! We arranged for them to visit at dinner time! It really was that simple. We had been saying ‘see taxi’ and ‘new driver’ and ‘school taxi’ to him and in his mind he never gets in a taxi at that time of day and he certainly doesn’t go to school after his tea! So when it came to the day, the one you all see the photo of, off he went. Because that was right: first taxi, then school! And the promise of a school dinner had him flying right out the house. (was my cooking for the last seven weeks really THAT bad?) Can you tell any of the trauma we went through just from the photo?

There’s more than meets the eye.

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As I took Naomi to her school for the first day and finally left her in her classroom sitting at her desk with all the other children I had the same emotions as all the other parents there. What you don’t see is the fact she is the first child to go to that school who isn’t toilet trained. She is the only child in the room wearing a nappy. And she drank her milk that morning from a bottle too. But as all the other parents made their way out of the building a line of adults waited to talk to me. Then I suddenly realise there is more going on: An autism outreach worker, two classroom assistants, the class teacher and the new Head teacher too all waiting to introduce themselves. Though they were not in today there will also be speech and language therapist, occupational therapist and various other professionals involved too. Because I have pushed for as much support as I can get. She may be going to mainstream but she will jolly well be supported.

There will be meetings, reports and iep’s written up within weeks. There are still some unknowns but she went there today, and she held it together. And I am so proud of her for that.

This afternoon and tonight we will have the aftermath of the first school day. The stress doesn’t end for these children at the school gate. Autism, nf1 and developmental delays are 24-7. We will have it today, tomorrow and forever.

The photos are a great memory of one special day. Thank you for liking them, commenting and loving us.

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Please remember though that behind those photos there is more going on than meets the eye.

And that will be the same for so many families of special needs children too. 

Ten things I have learnt as a special needs parent

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My children have extra needs. Isaac has classic autism, global developmental delay, neurofibromatosis type 1, vision impairment, learning difficulties and he is non verbal. Naomi has motor difficulties, delay in some areas of development, high anxiety and autism. In the five years I have been learning and growing with them I think I have learnt just as much as they have. Here are some of the things I have learnt about parenting special needs children:

1. Get as much help as possible.

From charities, support groups, financial advice, therapists, and people who will pray. I can’t do this on my own. My children need intensive and on-going support. I am only one person. I can not possibly know all the ins and outs of any benefits they are entitled to or what help could be available. Going it alone when there are people willing and able to help will not benefit my children. And it will only exhaust and frustrate me trying to be everything to my children. Asking for help is the first step to getting help.

2. Listen to advice of others.
Yes I know my child better than anyone. No, not all the advice from others is going to be of use or work for my children like it did for them. But I am not the only one to have walked this journey. Sometimes being teachable and humble enough to admit what I am doing may not be best is what will bring the breakthrough. Being willing to change could be what brings the answer I need. Learning is part of growing both for my children and for myself.

3. Make myself and my child known.
Self refer to professions and agencies wherever possible. Keep in regular contact with the team working with your child. Know their names and the targets they are working on. Call charities and support lines for advice. Make people aware of your child’s needs. Ask the supermarket for a suitable trolley for your child, or if they could possible turn the music down. If you don’t ask, you won’t get. They have no idea why he is screaming so if they can do something to help, just ask them. It helps me and my child, and it educates others too. It goes along with asking for help. Don’t be ashamed of telling people the needs of your child before you go somewhere. We know our children but others don’t so share your knowledge with everyone who works with them. My son is non verbal so he relies on me to tell people his likes and disikes on his behalf. And others don’t always know the signs of anxiety in my daughter.

4. Educate yourself on what professionals do.
I used to think the speech therapist would get my child to talk within a few months. I was devastated when she first mentioned thinking of other ways for him to communicate. I was sure she would teach him to speak, after all she was called a speech therapist? I thought the educational psychologist would educate my child, not just observe. I expected the paediatrician to give me a way to stop my child head banging. Reality is that their jobs are so different to how I first perceived them. Now I understand the difference between an occupational therapist and a physiotherapist I know best who to speak to when my child has issues and I know who to chase up for adaptions to my house. Even knowing wether they work for social work, health, education, or a charity makes a difference to how much authority they hold and how much they can help.

5. Do what you need to do to get sleep!

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It was a huge issue for me to think about giving my child melatonin to help him sleep. But he was suffering from the lack of sleep and so were we all. It was cruelty to continue as we were doing. They say to ‘sleep when they sleep’ but what do you do when they just don’t sleep? I remember when my children first started nursery; there was so much house work to do, so many things I wanted to do while they were out, but my body just yearned for sleep. And I still sleep when they are out if I can. I am no use to my children if my body can not function and my mind is not alert. It is ok to admit you need rest and sleep. If it takes co-sleeping with your child, or having a light on all night, or even having to use the television to get them to sleep, in my book that is ok. For us it takes my son pulling the duvet cover off before he will go to sleep. We all need sleep, parents included! I never valued sleep so highly until I had children!

6. Try and avoid the path of isolation.
Oh that is easier said than done. When your child has no understanding of social rules, has sensory overload and high anxiety when leaving the house, or you have safety concerns taking them out, it is easy to become isolated. There are online support groups for those times when getting out truly is impossible. But nothing beats a hug from someone who understands. And fresh air is so invigorating, even when it is pouring with rain. Even talking to a neighbour makes you feel stronger. Ironically since many children with special needs get transport to and from education the parents are less likely to get out that other parents. Yet these are the very parents who need to get out and make friends at the school gate. Isolation leads to depression and loneliness. I have been there. And I could easily go there again. So I make us go out sometimes. And most times it is worthwhile. The majority of times it is to groups with other families in similar positions, but by going to these things you feel part of something. You feel someone cares, you see others dealing with the same things and you feel far less alone. And that is priceless.

7. Learn about your child’s diagnosis.
Do what you can to get to training courses. If child care is an issue tell the course provider. They may be able to help. If they can’t at least they will know why people are not attending. These courses are wonderful for meeting other parents and hearing information and strategies to help your child. Knowledge is powerful. Read books, study online and ask those working with your child. Every child is unique but knowing how your child understands the world or possible future issues to look out for is invaluable in knowing how to care for your child. I knew my son was vision impaired but I had no idea how to prepare visuals and know what he would be able to see. I knew he had a tumour condition but as he is non verbal I had no idea where, if at all, this could be causing him pain. Learning about his conditions has made me a fellow professional in caring for him. I can advocate better for his needs when I understand those needs better. And it helps to know the ‘lingo’ of the professionals too. I can now explain to others who ask why my children are struggling with toilet training. They are not just lazy!

8. Don’t sweat the small stuff.
I fight big battles every day with my children. So some battles really pale into insignificance. It is all relative. My son will only wear his red school jumper every single day of the week. Other than pyjamas he wears his jumper at all times. He would sleep in it if he could.

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Would I like him to wear other clothes? Of course! Does it really matter? No. He has seizures, he is non verbal, he can not care for himself at all, he has very limited communication, he eats things that are not edible, and he is developmentally only 18 months old at aged 5. So on the grand scale of things the clothes he wears are not that important really. My daughter has a very limited diet and last week she had chocolate for breakfast one day. It is far from the healthiest of breakfasts but when she is underweight, has food anxiety and does not recognise hunger or thirst at aged 5, I would prefer she ate something rather than nothing. We can work on her choice of food another time. For now she is eating. As a parent of two special needs children if I fought every battle I would be exhausted, crazy and overwhelmed. So some things get left for another day. And that is ok. It may never be perfect.

9. Don’t dwell on what your children can’t do. Celebrate what they can do.
Life is so negative. Disability forms are extremely negative. To get your child the support and help they need often means dwelling on the negatives. Seeing what other children their age (or even younger) can do can be depressing. It is one of the hardest things for parents of special needs children who attend mainstream schooling as you are faced daily with children achieving effortlessly what your child has been struggling with for years.
One of the ways I counteract this is to look back on my children’s photos regularly. It reminds me that although my daughter did not walk until 2 and a half, and my son did not walk until 3, they did walk. And now they can run, climb, sit themselves and hold a spoon. I look at developmental milestones as achievements but ignore the ages. And I celebrate everything. I got excited when my boy first pointed just before his fifth birthday. I got excited the first time my daughter told me another child’s name. Realising both my children know how to turn the pages in a book and now know when it is upside down brings me great delight. I could easily get depressed every time the nappies get delivered and I realise they are for my 5 year olds. I could cry thinking my son can not speak. But that doesn’t help them, or me. So I take delight in them instead. And enjoy playing with them and having fun with all the things they can do. I chucked the shape sorters in the bin and let them pour magnetic letters into cardboard cups instead. Much more fun.

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10. Enjoy your children and have fun.
With all the therapies and courses and medical appointments it can feel like everything you do with your child has to help them communicate, or get them to eat something new, or help them develop a new skill. But what does your child want? They want you to play. I spend more time on the floor playing trains than I do on the phone somedays. There are times when three hospital appointments in one day is just too much. So I reschedule one and spend time playing with my children. Yesterday they climbed into bed together and I became the tickle monster. It wasn’t speech therapy, or physiotherapy, or intensive interaction. It was play. When my son goes into his own world staring out the window I sing about the rain. And we have fun together.window

For all their disabilities and challenges and additional needs they are two little children who need love, laughter and fun.

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And the most importand thing I can give them is my time and love. Together we will keep on learning and growing.

Ignore, challenge, accept or embrace?

This trip was planned. The sat-nav was set, the kids in the car, the mobility buggy packed, and a toy train in my daughters hand. The long awaiting launch of a charity called Funny Lumps, supporting children with neurofibromatosis type 1, the tumour condition both dad and Isaac have. We were looking forward to it. A chance to meet other families coping with the same condition, the chance to hear information on the condition and a great opportunity for the children to explore the Riverside museum.
I never saw one exhibit. I never spoke to one other family with NF1, and we didn’t get any more information about the condition. What I did see though was a reflection on how the world sees my children. As I witnessed some ignoring them, others challenging them, some accepting them and a few precious strangers embracing them, it opened my eyes to the world outside my own.
Here is the story of the trip to the museum:

I’ve stood here almost 20 minutes now and you are just as excited and enthralled as you were the moment we arrived. Over 50 people must have passed you by now. One or two of whom have actually pushed you aside. An innocent, happy, excited child just engrossed in your own little world fascinated by the simple opening and closing of the doors others are just walking through and ignoring. Doors, two sets, one after the other. Automatically opening and closing as people enter and leave. A little piece of heaven to you.

You notice the exact spot that triggers the mechanism to work, you notice the tiny red flashing light above, you feel the breeze and the drops of rain and the difference in temperature as both doors open at once. You love the passing from one terrain to an other, the transition from inside to out and the change in flooring. You get excited as you see that an approaching stranger is going to cause something to happen that you can predict. And even though you knew what would happen it still brings you delight. Again and again and again. Over and over, time without number. Oblivious to others reactions, oblivious to the cold, or any danger, or even where you are.

I want to be like that. I want to embrace the wonder, the freedom, the awe of it all. I want to accept that this is what you love. Not the fascination of the old trains, buses, taxis and trams. Not the contents of an old campervan. Not the old noises of previous fire engines and police cars. But the opening and closing of automatic doors.

A elderly couple passes by. They ignore you. Families rushing in and out of the pouring rain ignore you too. Coach loads of strangers ignore you. Tall men and short women ignore you. Why pay attention to a flapping, vocalising, strangers child? Why bother with someone clearly different?
In life so many people will ignore us. But keep on going son. Keep on loving life. Don’t let the fact others are not paying attention affect how you are or what you do. It is better they ignore you than hurt you or laugh at you. Let them ignore you. Mummy isn’t ignoring you. God will never ignore you. As others carry on with their life you carry on with your love affair with your doors. And may we all get excited about something and find joy like you have.

A family with a young baby challenges you. You are in the way of their pram. Your world momentarily clashed with theirs. The same with those teenage girls. You just happened to be in front of them. With a little encouragement and physical prompting the challenge was resolved. Sometimes lives collide. People clash. People can get in our way. But patience and encouragement go a long way. Not everyone likes what you do my precious. Everyone is different. In those challenges we all learn though. You had to pop out your bubble for a bit. They all had to be more aware too. A little inconvenience perhaps but life goes on. Think of all those people that haven’t challenged you though. Because the world really is full of love. And there will always be people on your side. Life has many challenges but may we all learn to grow and be better for them. Move on, keep flapping and keep laughing son.

A mother smiles at me. That knowing smile from a weary stranger. The 15 or 16 year old with her is hooked under her arm, held close while he grunts. ‘Autism’, she whispers with love in her eyes. The look of a fellow special needs mum who has found herself in a similar place in the past. Acceptance that life isn’t always as you thought it would be. Acceptance of difference. Acceptance that life goes on and you make the best of it. She gives me hope that one day we might get further. We might get to show you those exhibitions after all, even if your arm is tucked in mine. I wouldn’t be standing here still if I didn’t accept your autism son. I’ve walked the embarrassment, the worry of what others think, the concerns for your safety, the feelings that this isn’t ‘normal’. Dad is walking around the museum worried about you. Concern and stress is eating at him. Because this isn’t how trips out ought to be. But it is what it is. And here we are. We accept you for who you are even when others don’t. Because God accepts you. Just like he accepts me.

A member of staff starts talking to me. She has been watching you and smiling. There to hand out maps of the museum and you are entertaining her. And she is embracing it. You stop as yet another stranger runs through the rain towards the door. Your laughter and excitement as the thing you predict happens once again. In all the noise of the crowds, through the splashing of the rain on the building, the chatter of hundreds of people, through the ding dong of announcements I heard her laugh with you. A little boy made her laugh. She embraced the wonder and love with you. Then she told me something amazing. ‘Did you know’ she said, ‘that these doors cost thousands of pounds? Many of these vehicles on display were donated, or found, at very little expense but these doors cost thousands.’ She paused. ‘It’s nice to see someone appreciate them. That’s all.’

You did more than appreciate them son. You embraced them.

You are priceless son. And we need to embrace that.

Some might ignore,some might challenge, some might accept, but the more people embrace you in life the better all our lives will be.

Maybe we should all try having fun with some automatic doors! And maybe we need to embrace those who are different more too. Because everyone who passed through those doors that day is special. And everyone is different. Wether we ignore it, challenge it, accept it or embrace it is up to us.

In the irony of the fact we never quite got to be part of a charity launch set to support you and others with nf1, you taught me more than any speaker could.
Thank you Isaac.

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We went on holiday…and autism came too!

Ah, holiday time. Time to get away from all the stresses in life, chill out, relax and get away from it all. Ermmm…I am a parent carer of two children with autism so I went on holiday..and autism came too. Very few people would dream of taking thier full-time work on holiday with them but I had no choice. There is no respite breaks and no other family came with us to allow us time away from the 24 hour needs of the children. There was no holiday from sleepless nights, 4 am rises, sensory issues, communication difficulties and obsessions.

But we had a great time and made great memories. And I treasure time spent with my children however hard and challenging it is at times. And it really was a break from constant visits and appointments with professsionals, dealing with letters and daily phone calls and chasing up never ending referrals and such like. For 7 days we were not fighting for our childrens rights, not doing some sort of therapy or other with them, not preparing them for the next visit or appointment or filling in any paperwork about thier ever changing needs. For 7 days we were just mum and dad. And that was a holiday enough.

We had to choose our holiday carefully though. After all autism was coming too. No loud evening entertainment, no waiting on planes or trains, no visits to theme parks with loud noise and flashing lights to trigger seizures. No sailing or open seas for Isaac to dive into, no hotels full of people to complain about his sceaming. Nowhere too isolated in case of medical emergencies (Isaac has pica where everything goes into his mouth, seizures that could at any time requiring medical care and tumours, so we always google the nearest hospital anywhere we go) but nowhere too busy that crowds and noise would be an issue. Oh, and even for 7 days Isaac would still require his own bedroom. So we settled on a quiet caravan park…well, quiet until we arrived that is! It is one of lifes ironies that my children do not tolerate loud noise but yet their screams can be heard for miles around!

So what is the first thing you do when you arrive at the caravan? Put the kettel on? Unpack? Have a good nosey around? No when you have autsim you might do what Isaac did…lick the caravan!

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And as you can see he had flags with him too. His current fixation is things on sticks. Lollypops, icelollies, flags (especially flags!) and umbrellas. It all goes hand in hand with his utter fixation with straight lines. So you can only imagine his absolute excitement and joy when we drove up to the caravan to see it had decking…rows and rows of neat straight lines. Boy, he could have spend the entire week on that decking come rain or shine. It really is one of the delights of this child that something so simple, something we would hardly even notice can bring him such joy and amazement. It is one of the most enteering aspects of his autism/learning disabilities and neurofibromatosis type 1 that for all his difficulties, he can actually at times be so easily entertained.

He sat like this for hours, cuddling his favourite blanket and running his hands along those beautiful and fixating lines. Who needs kids clubs and expensive enterainment?

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He walked up and down that decking with flags:

ImageAnd with an umbrella:ImageWhile his sister read her books over and over and over:

Imageand played with her trains in the exact same way she always does:

ImageBecause you don’t get a holiday from autism. You go on holiday…and autism comes too!

But we went swimming, we ate out (ok so mcdonalds and pizza hut and a fish supper at the beach count right?), we went to soft play, we went shopping and we even went to the local police station!

Yes, my anxious and sensitive daughter got very upset when we went to a local swing park and found an abandoned cuddly toy dog. She creid bucket loads at the thought of this poor dog being left out in the wet and cold at night without a child to cuddle it and she was equally insistant that the ‘rules’ are you must never take anything that isn’t yours. So mum’s solution was a little trip to the local police station where a kind and perplexed policeman was happy to reasure my tearful daughter that they were well used to looking after dogs (I am pretty sure he meant real ones but don’t tell her that) and that lost little puppies were usually claimed very quickly. It might have been nothing for that policeman but boy have we heard the story of the lost puppy in the park over and over and over…mummy does it have a little girl or boy yet? mummy can you hear it barking? mummy how sad it would have been if I didn’t find it? 

Yip, autism came on holiday!

And autism came home with us too. And it screamed when we came in the door. It seams they preferred going back to the caravan than a house full of toys. Or maybe my boy missed that decking and it’s awesome straight lines? Or the life size plastic ice-creams outside shops that he screamed and strectched his hand out for everytime we passed them (perhaps the seaside has it’s diasadvantages after all!). Or maybe they just liked us being mum and dad for 7 days. But most of all I think they just miss being children and not being constantly talked about, dragged to appointments, watched and assessed and having to perform and work with people or thier agenda all the time. Sometimes it is nice to just sit down, cuddle your favourite blanket, suck a pacifier and watch a dvd. After all even autism needs a holiday! 

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(P.S. Don’t ask the kids about their holiday. Isaac is non verbal and Naomi will only tell you about the night she had a nose bleed, the nightmare she had about a cow coming into her room and that story about the lost puppy at the park! She might also tell you about the fact she was in a magazine too which is also true but she won’t belive you if you tell her you have seen it as she only thinks it was in a magazine at the seaside! For those of you in the UK her story appeared in take a break magazine this week)