To hear my daughter cry

This afternoon my 5 year old went into her room, sat on her bed and broke her heart. She wasn’t upset at not getting her own way or being told off, or because her brother had taken her toys yet again. She broke down in tears because she believes she is a failure. At just 5 years old. How does a mother deal with that?
How do I balance my daughters tender self esteem and mental heath with the need to push her development on and challenge her?
Naomi has autism spectrum disorder. She is neither on the severe end of the spectrum or the high functioning end. Compared to her twin brother (severe asd non verbal) she is high functioning but in reality her autism impacts on her a huge amount. But she does not have learning difficulties and she has a good grasp of language (though a very literal thinker). She does have co-ordination difficulties and communication challenges and socially struggles a huge amount. But she doesn’t need to hear this.
Hearing her cry today, sitting with her and talking to her, I realised that so much needs to change. This little girl needs to feel secure, loved, accepted and believe in herself. She needs encouragement, rewards and a sense of achievement.
She watches while her brother, with all his profound needs, receives certificates at school for ‘star of the week’ for something she could have done three years before. But being in mainstream nursery with over 40 other children each session she just can’t compete. She listens while we talk to professional after professional about the concerns we have regarding her development. And this is going into her spirit.
It never has sat well with me that we take the children with us to see paediatricians, hospital doctors, educational psychologists, speech and language therapists, and many others. While I understand that these people clearly need to see my children, I find it concerning that little ears are hearing adults talk about them like they are not there, and in a way that only seems to address their difficulties and struggles. How would I feel if It was me being talked about? Hearing phrases like ‘struggling with toilet training’, ‘not able to make friends’, ‘still not talking to others’, ‘still not able to dress herself’. While professionals need to hear these things to be able to help it has to be affecting the child’s self esteem.
And it doesn’t just happen in clinic appointments. This week alone a health visitor and disability social worker have visited us at home. And as much as I try to schedule this while the children are out, they either stay until they come home or arrive so late the children are already here. It makes talking very difficult as this is the children’s home being invaded. And once again we are expected to discuss our concerns while having them in the room. For my son this isn’t a major issue as his understanding and comprehension is so poor. But he does hear his name getting mentioned and I am sure he senses he is being talked about. And no amount of distraction takes away from the fact my daughter knows we are talking about her.
And she has had enough.
She has had enough of us discussing how after almost 2 weeks of the nursery putting her in pants she has yet to manage to do anything in the toilet.
She has had enough of us telling people she struggles to dress herself and use cutlery and put on her own coat and the many other self help skills a five year old should be achieving.
She has had enough of the pressure to carry out tasks effectively just because she has been given a visual schedule.
She has had enough of hearing she has to be a ‘big girl’ because she is going to ‘big school’ soon.
It is all too much for a 5 year old.
I was told today that no matter how upset she gets, no matter how strong willed against something she is or the fact she seems to not be able to do something I still need to push her. The fact she is upset is due to her controlling me and not being willing to move on with her development.
But there is upset at not being able to achieve like you want to be able to and then there is damaging a child’s mental health.
I wish that professional could have been here today. To hear my daughter tell me how sad she is. To see the damage it does to a child to push them beyond what they truly are capable of doing. To hear my daughter cry.
I’m not entirely sure how we move on from here. We have more appointments next week where yet again we need to discuss some of our concerns about her. And she has to be there. But I am determined to protect this fragile butterfly from any more damage. I refuse to let professionals push her beyond what she can achieve and thus make her feel like a failure. I am determined to make her feel loved, cherished and to have a sense of achievement like her brother. She is beautiful, clever, funny, caring and sensitive. And my mission is to get her to believe this. And to get the professionals to see how talking about our children in front of them is not helpful to their self esteem or mental health.
Today I opened my eyes.
Today I heard my daughters heart.
Today I heard my daughter cry.

This is home

They say home is where the heart is. Home is the one place you should be relaxed, loved, accepted and free to be yourself.
It is where children should be free to play, relax, unwind, receive physical and emotional nourishment, be safe and be able to have fun. Where goofing around, laughing, tickling, cuddles, love and forgiveness should flow freely. A place where growing up and making mistakes is accepted both for children and adults. The one place where you can truly be yourself without judgement.
Yet so often my home is filled with screaming, tantrums, shouting, stress and tension. And sometimes the reason for this disharmony is because home is no longer becoming the place it should be, for my children or for me. The one place that should be free of judgement and pressure is becoming encroached upon by outside influences. In our case well meaning professionals.
Now before I go any further, please give me a minute to explain. I am the mum who writes daily in my children’s home/school diaries, I am on school committees, I attend every meeting about my children, I am continually fighting to get their needs met, and I spend many hours working with them both to help them achieve all they can be. I am a huge believer in working with the professionals and continuing where possible the work they are doing at home. My son has laminated photos all over the kitchen cupboards to help him communicate, my daughter has social stories read to her daily, I read books to them, sing to them and play with them both all the time. But there comes a time when I have to say that ‘this is home’ and we just chill watching a dvd or play tickle monster or just watch my son as he looks out the window watching the rain. Because as much as my children need therapy, and support and training, they also need to be able to be themselves and relax and be allowed to just be children. And home is the one place they should be allowed to do that more than anywhere.
So right now I am clashing with the professionals dealing with my daughter. Because for the first time I am not implementing the same strategies as her team of professionals are. This happens to also have been the first time her ‘team’ have discussed such strategies without us, as parents, having been invited. That could be another blog all to itself! But that outrage aside, the sheer intensity and stress of the current programme for Naomi is such that I have had to say ‘enough is enough’ and just let the nursery carry out the plan there alone. I know this will affect her development, her confidence and the whole continuity of the aims of the plan but I can not, and will not, allow anything that happens to one of my family affect the entire family in such a way as to cause my home to no longer feel like home for everyone.
You see, while I want to move my children on and support them all I can, I must balance the needs of one child with the needs of the entire family. And I need to remember that this is home, not school, or nursery, or a treatment centre or a training course.
Home should not be about constantly meeting targets, or analysing everything that is said and done, or recording every sound, or completing educational objectives. Home is fun, relaxing, and being yourself. My children should not be so stressed at home that they cry every time you look at them.
When I had a bad fall down stairs four months ago and required weekly physiotherapy I scheduled every appointment around my children’s school and nursery times. And I did the exercises as and when I could. Life did not stop at 4pm daily while mum does her 30 minutes of ham string exercises. Because the reality of home life is not like that. You don’t get a ticket at home, wait until your name is called and then have your half hour of therapy 1-1. It has to be worked around household chores, caring for children, hospital appointments, paying bills and phone calls. This is home.
So what is this intense strategy we are not doing? Well the professionals involved in my daughters care have decided to start an intense toilet training regime with her. She will no longer be wearing nappies at nursery and will be taken to the toilet every twenty minutes regardless what she is doing. Today that meant she was taken from a game she was playing with other children after much encouragement to join in, only to come back from the toilet trip to find the game had finished and she had lost. She was then taken during snack and therefore missed out on a drink (how ironic when this could have aided their toiletting plan!), and many other times that she can’t remember as her stress levels had escalated so much. In fact her stress became so high she had a fall in nursery and banged her cheek on the corner of a table. And you know what, never once did she manage anything in the toilet but she still had an accident. And she came home from nursery distraught.

I am supposed to be taking her every 20 minutes at home too. And nappies are only supposed to be for bedtime. And on top of this we are supposed to record on a daily chart when she is wet, or has a bowel movement, or if anything happens on the toilet. Every twenty minutes from waking to sleep. But I just can’t do it.
Naomi’s twin brother has severe and complex needs. He has seizures, is non verbal, requires support at all times and is also in nappies. I need to cook, clean, eat, attend appointments with my children, leave the house, and play with my children. And I need to keep my marriage going in all this too.
My daughter isn’t coping with the intensity. My son is not understanding mum always seeing to his sister every twenty minutes and not being there when he needs me, my husband is stressed trying to cook, clean and continue life around 20 minute clock alarms and none of us are happy. Home is no longer a place of safety, or fun, or laughter. And going out is a nightmare.
So to everyone’s relief the pull ups are back on. Toilet trips are worked around everyday life and if she isn’t ready, then so what.
This week it was toiletting, a few months ago it was my physio, the year before that we had to record every morsel my daughter ate for the dietician, and next year it could be homework from school shifting the balance.
Whatever it is, the value of home life will always stay strong with me. Home is where we should all be able to be ourselves, be loved and learn through play. Without stress, pressure or targets to meet. Without alarms ringing to call us to the next thing, or without filling in forms every 20 minutes or having to record everything your child eats or says.
It’s getting the balance really. School is school. Hospital is hospital. But here…well here is where you kick off your shoes, wear your pyjamas when you want, cover the living room in train sets, watch dvd’s of lift doors opening and closing as much as you want, make mistakes, be forgiven and be loved whatever.
This is home.

      

If my 5 year olds ruled the world…

I am the mother of five year old twins. They both have autism spectrum disorder but in many ways they are just two beautiful, funny, loveable children. And, as every parent of young children knows, children think they know everything (even when they can’t speak). So for a bit of fun I thought I would share what life would be like for us all if my two five years olds ruled the world:

1. Mr moon would only ever come out at bedtime and there would be stars every night irrespective of weather conditions.

2. The sun would shine whenever they wanted but never when they are trying to do something like look at a book in the car as then it should vanish so as not to get in their eyes.

3. Lights should come on every time you enter a room but never on full as too much light hurts their eyes.

4. Light switches should all be child level so they can play on and off lights any time they so wish.

5. TV channels should only ever show the programmes they like and never anything scary, naughty or too loud. And never any presenters or other boring bits like adverts in between.

6. Everyone should live in houses with automatic doors as they are much more fun than boring old conventional doors.

7. Everywhere should have lifts as there is nothing better to play with than lifts. They were only invented for the entertainment of children as adults can clearly just use the stairs.

8. As soon as a toy is requested by a child they should have it NOW.

9. Nothing should require being explained. Parents should know everything that ever happens to you, whatever everyone says to you and who you play with at school and nursery.

10. All restaurants should be like macdonalds and have toys with their meals and be ready instantly. No child should ever be made to wait for anything in life.

11. It should snow whenever a child feels like building a snowman. Seasons are something teachers talk about and not related to the weather in any way.

12. Toy shops, museums, soft plays and any children’s centres or clubs should be open whenever children fancy going not just during working hours. Do these managers not realise a child might wake up at 2am wanting to go to soft play?

13. Ice-cream can be eaten any time of day. Why stick to cereal or toast for breakfast? How boring is that.

14. Sprinkles can be put on anything. Fact.

15. Who invented socks with seams? Or lace up shoes? All clothes should be fluffy, warm, comfy and seamless. And have fluffy feet instead of socks or shoes.

16. Baths are for playing in not getting clean in. The more water on the bathroom floor the better.

17. No-one should be allowed to make loud noises without prior warning. Fireworks should be silent, dogs should not bark loudly, and people should never ever shout.

18. Adults should be sent to the naughty step for bad behaviour too!

19. Using picture cards to communicate is the way forward. There is no need for such other things like email, post, or telephones.

20. The answer to every question is yes. Not ‘wait and see’, ‘just a minute’ ‘not now’ or ‘ask dad’. Such vocabulary should be against the law!

21. Mums should be able to read your mind. They should know exactly what you want to eat, what you want to wear and where you want to go at all times without any need for communication.

22. Everywhere you go should be in the same direction, preferably on the route to school so as not to confuse them.

23. Homework should be abolished. Home is for fun and playing not learning! Who would ever learn anything from being at home?

24. Other children are only useful for having different toys to explore. After you have seen their toys and licked them or lined them up they have no other purpose.

25. Bedtime is when people are tired. If that is 4pm or 4am then what difference does it make?

26. Likewise getting up time is whenever you wake up. Why waste hours in bed when you could be playing? So the house is dark..that’s what lights are for!

27. Wifi should be everywhere: In the car, while you shop, in school and nursery and even at the dinner table. Do other people not realise you are watching something on you tube? How will you ever know what happens to the teletubbies if the internet goes off?

28. You tube should know your favourite 20 seconds of clip from your favourite video and automatically have it on repeat for you all day long.

29. Everyone should wear pull ups. Why would you want to interrupt what you are doing to go to another room just to pee?

30. Mummy should never ever leave you. What if you get scared, or have an accident, or randomly think of something you want to tell her about something you remembered from last summer? She should always have drinks and snacks available too wherever you are.

31. Nothing should need paid for. If you want it why should money and cost come into it. You just put it on the belt, get it ‘beeped’ then press numbers in a machine. How does that stop you having what you want?

32. Holidays should be whenever you want. If it is sunny you should go to the beach not to school. If it is snowing you build snowmen. If it is raining you splash in puddles all day. School is only for the times in between.

33. Made up rules are the best. Why go down snakes in a game when that means you might lose? Why turn only two cards over to match them up when you will never find the one you want unless you turn them all over? If you are losing just change the rules so you win. That works much better.

34. School and nursery should start when you have had time to finish playing first. And end when you get bored.

35. Washing machines are great entertainment, as are boxes, buttons, coat hangers and pegs of any sort.

               

36. Everybody needs a teddy bear. You never know when you might need a cuddle.

37. Bubbles should be everywhere.

38. Wall paper should come with colouring pens so you can make it any colour you want whenever you want.

39. Floors should be made of rubber so you never hurt yourself when you fall.

40. It is still ok to want to be carried. Sometimes life gets too overwhelming and we all need picked up and carried to safety.

Maybe the country really should be run by 5 year olds after all. Anyone fancy a game of snakes and ladders…

Ten things I have learnt as a special needs parent

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!

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.

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.

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.

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

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