I’m sorry I’m failing you my son

I’m doing my best son. Honestly.

I’m phoning, writing, applying for things that you might like or that might help you, searching the internet for anything that might encourage your development. You are known to social services, you are known to education, occupational health, your additional support needs nursery, the special school you are going to soon, the health visitor, your genetic support nurse, friends at church, the neighbours. But still I feel I am failing you my son.

I applied in February this year to get a carers assessment and an assessment of your needs completed by social work. I want to help you. It took months for anything to happen but finally the social services sent an occupational therapist out to the house to do an assessment. I know you have no idea who that was when she came son but I asked her to try and help. She came up with some real ideas to support you. She promised me so much son. She was going to get the steps outside painted at the edges so you see them better and don’t fall over and hurt yourself any more. She was going to get a small handrail on the inside stairs so you have support when trying to walk up them rather than crawling. She was going to look into getting something sorted at the windows so you don’t fall out them. Yes, son, I told her you love sitting up and standing up at them. She wasn’t impressed but I begged her to help.

But nothing has happened. The promises came to nothing. She failed us. I’m sorry I failed you my son. But I tried. I really thought they might help us.

Once we got allocated a social worker and they started the assessments I told her everything about you. I told her all about the fight I was in to get you the right school. I told her they wanted you to go to a school with stairs you could not climb, and that you could not cope with having lunch with 200 other children. But she couldn’t help. She didn’t really want to know. She said that fight was with education. They failed you too son. They refused our appeal and turned down our placing request for the local special school. I want you to know son that you now have a brilliant school to go to in August. I know you might never understand what happened but I fought and I fought for you my son. And with the help of strangers you and I might never ever meet we won. I know it will be tough on you having to travel 22 miles back and forth to school every day. I know it will make your day longer than you or I want, but I’m doing my best son. And the authority only have two special schools. The other one was full. This was the best I could do.

I know you are really struggling to communicate son. I have pushed and pushed for speech therapy. I have cried in their office. I have made so many calls to them. But still there is nothing for the 7 weeks school holiday. Apparently everyone needs a holiday they say. But you don’t get a holiday from your frustrations. And I don’t get a holiday from your head banging, screaming and crying. If we went private by the time anything was in place the summer would be over. I’m sorry I am failing you again my son. I’m doing the best I can. I have told them it isn’t good enough for you. But there is a system. That’s what they call it. I know that means nothing to you. You just want help. I do too.

I told the social worker you like to walk outside. I told her the bushes in the street are amazing to you. I told her you like to wander down the dual carriageway at the end of our street. She suggested strongly I need to stop you. She said I must watch you more. That what you are doing is dangerous. I told her I did know that but I only need to turn my back for a second and you are out. She suggested locking the doors and alarming them. She said you need to be a prisoner in your own home. I did tell her all children need fresh air. She just said that if I can’t watch you because I have your sister to watch too then you need strapped in your buggy. I know you hate that. I know that’s why you bite me when I put you in it. You don’t understand the danger of walking up and down a main road with two lanes of fast moving traffic in each direction. You just see we are hurting you and spoiling your fun. And you will just try doing it again the next time, and the time after that. And every opportunity you get. I need to keep you safe son. I’m sorry you might never understand that.

I told her you love sitting up at the window. I explained that you find a way to climb up them no matter what I do to stop you. I told her you now like to stand on the windowsills too. She didn’t look amused but it is very funny for you. I did tell her how funny you find it but she never really understood that. I wish I knew what you find funny too. Perhaps it is the people walking past, or the fun of the chase or the fact you get a different angle on the world. I don’t want to always spoil your fun. I know you have sensory needs that we need to meet. I know it relaxes you. But you really have no idea how stressed it makes me feel. You think it is fun that your window opens. Wow. How cool that you can get to feel fresh air and hear sounds louder from outside. The social worker told me yesterday that as your bedroom window is a fire escape we can’t lock it. And she said new windows cost too much for social services. I am sorry they see the cost of new windows as more than the value of your life son. I don’t make those rules. And apparently it is my fault for letting you climb up there. I don’t think they understand your autism.

In fact I know they don’t. Because I have cried and cried and cried for respite. The latest excuse is that you would have too much change with starting school soon. You would love respite son. They take you to fun places all on your own. You get undivided attention that I can’t give you because you have a twin sister at home. And the people that take you have energy that I don’t have. They get to sleep at night. Yes you would love respite. So would I. But they won’t give us it. I’ve failed you yet again. And I’ve failed your sister because she needs a break too.

I’m sorry that I don’t play with you at midnight and 3 o’clock in the morning when once again you have climbed up at the window or went searching for your favourite toys to chew. I wish I was a robot that didn’t need sleep so I could be there and be bright and energetic at all hours of the day and night like you are. I’m sorry fatigue and exhaustion make me shout at you sometimes. I feel like I am failing you but really I am doing the best I can.

I need to take you to hospital tomorrow. You have tumours that need to be checked. You won’t like it. Neither will I. They will ask me questions son and I wish you could help me answer them. They will want to know if you are in pain with your tumours. You squeal and cry a lot but are you in pain son? Or just frustrated? They will be feeling you to see if the tumours have grown. You might not like that. Please don’t bite them. Please. They will be checking for other side effects of your condition like scoliosis, eye problems, and cancer. You will like the bit where you get stripped off. Sadly we need to dress you again. It would be good if you didn’t poo when we do it this time!

Today your nursery had a sports day and graduation. I know you hated every minute of it. You cried and fought and got very upset. I don’t know why they made you do it. All I can say is that these places like putting events like this on and it isn’t about you. It’s about them.

It never seems to be about you son. But I am trying to make it about you. I am trying to stop the system from failing you. I am desperately trying to get you the help and services you need. But right now I feel I am failing you and I am sorry it seems like that.

So I am going to let the world see you having fun at the window. You don’t know the dangers. But why would you? You are only 4 and have classic autism, severe learning difficulties, global delay and neurofibromatosis type 1. The system should be helping you but they are failing you.

And I’m sorry I am failing you too. Hopefully one day you will understand I am doing everything I can. And I love you.

I could sleep on a bed of nails

Over the years I have done many jobs and worked long hours. At one point I had 3 different jobs at once cleaning, working for the council and doing catalogue sales 6 days a week. But no job has ever had such demanding hours, such little breaks and as little sleep as being a mum! You take your work on holiday with you too! Yes the perks are fantastic and the rewards amazing but right now I am so seriously sleep deprived I really could sleep on a bed of nails.

The twins attend nursery 5 mornings a week for a few hours. That’s on the days when they can go. There is hardly a week without hospital appointments, clinic appointments, check ups or meetings to attend that require us to have them both out of nursery as we can not guarantee to be home in time for the other one getting out at 11:30. We currently have eye clinics every 8 weeks, the optometrist every 8 weeks , developmental paediatrician every month for Naomi, medical paediatrician every 6 months for Isaac, health visitor visits once a month, social work visits, multi-discipline reviews, speech therapy meetings, school transitions and lots of other meetings and check ups to attend. It is exhausting just writing them never mind attending them all.

Then there’s the phone calls from the nursery, the genetic nurse, the educational psychologist, social worker and whoever else needs to keep up-to-date. It’s only June but already the diary could do with being replaced!

We have our own health to attend to as well as the children’s so I too have hospital and doctors appointments and check ups and prescriptions to collect. And now and again the odd blood test to fit in.

It is all so exhausting. But the most exhausting thing of all is the 24 hour care the children need. Last week Naomi was diagnosed with bowel and bladder problems and she is now on daily medication. It would be easier if it was a simple spoon full like her antibiotics for her ear infection the previous week but this is a dissolve in juice affair and she has to drink it all. Time consuming and stressful to get a four ear old to drink a cup of yucky tasting liquid. Every single day. And everyday the same battle. There is no easy way. At four she still needs dressed and her nappy changed too. And as all children do, she needs our time and attention to grow and thrive. But the most incredible thing about this girl is the fact she sleeps. And until you have to survive on the minutest of sleep you have no idea how much of a blessing that is. She naps during the day too. I mean this girl must have her twin brothers sleep gene too since he seems to have no concept of what sleep even means!

Isaac puts a new meaning to the term demanding. From the minute he is awake (assuming he has slept at all that is)he is high maintenance. He wants and requires a high level of routine including still drinking milk from a baby bottle at 4 and a half (but only ever for mum!). He is fickle, and depending on his mood or the amount of sleep he has had he will refuse all food some days except chocolate or ice lollies. Of course, he can not be allowed to do this so you face him biting you, screaming, hitting and head banging some mornings even before he has his clothes on! This is autism. This is everyday life for more people than you might ever know. It is like walking on eggshells every minute of every day. You are just waiting on the next meltdown. The next high pitched squeal. The next attack on his sister. Frustration, sensory overload and sheer annoyance at not getting his own way cause him to change from a placid settled child to an angry upset physical 4 year old in seconds. And you can not reason with him. You just can’t send him to the naughty step. Shouting and getting angry has no effect on him. Your tears would only make him laugh. But he still has to learn. Despite his disability he has to know that sometimes the answer is NO. Two minutes later he will repeat his action again. And again. And again. Repetition is his ‘thing’ so even if the action appears to have a negative reaction he will still repeat it. So we get bitten and bitten and bitten. You have to give this boy credit for determination though. I mean, if mum has said no to chocolate 6 times you just never know she might just give in on the seventh time. You might just wear her down! He does but I just can not give in.

At church he likes to walk. That’s ok you might think. Except he HAS to hold my hand. And walk up and down in straight lines over and over and over and over. Until my head is dizzy and my feet ache. But he won’t let you stop. Unless you want the entire congregation interrupted by high pitched screaming, yelling and a head banging child. What would you choose? Who needs the gym eh? It’s the same in the garden. I seriously know every minute detail of our garden hedge. My husband missed a branch 3 metres down half way across the top when he was trimming it. I have walked miles up and down that garden. The other day he replaced my hand with a flag. I could have kissed that flag. Although after Isaac has tried eating it and chewing it I think I will give that a miss actually.

You would think with eating everything and anything he would wait for his meals. No. He cries and pulls at you and makes all sorts of upset noises until you have finally cooked that meal and put it in front of him. The despite all the fuss and upset at the waiting he will mix it around, chew and play with it, eat about half to three quarters of it and then lose attention and start putting his hand in YOUR dinner and helping himself. Which rather puts you off your meal somewhat. An hour later and we are back to the screaming, demanding and going into the kitchen wanting food again. Sigh. His latest is opening the fridge, licking things and putting them back in. So have I put you off dinner at mine yet?

Dressing is a problem, nappy changes are a problem, chewing things he isn’t supposed to is a problem, trying to escape out the house is a problem, constantly wanting to access water is a problem, and did I say he doesn’t sleep? Oh he has no trouble wanting to go to bed but actually sleeping, well that is another thing altogether! A good night would be 5 hours sleep. But not always altogether. Where’s the fun in that?

These children bring me joy unimaginable. Their every achievement, every new milestone reached brings me to tears of pride and joy. The love I have for them can not be quantified. The lengths I would go to help and support them knows no boundaries. I think about them, pray for them, dream about them (in the few hours sleep I get) and want to spend my time with them. But I have to be honest. And I am exhausted. I could honestly sleep on a bed of nails…but I need to get Isaac to go to sleep first!

Even God had a day of rest you know!

smiling Naomi

garden Trying to eat the garden flowers!

fridge licking the contents of the fridge

flag I was exchanged for a flag…Thank goodness!

cereal Even breakfast is not a simple affair!

The most beautiful girl in the world

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Have you ever had a stranger do something so incredibly awesome it just makes you want to cry? I have. And it happened just this week. I pray the kindness and power of what the stranger did for me and my 4-year-old daughter impacts you the way it has impacted me. Some people make a mark on others lives that can never ever be erased.

We had went out as a family to a local place to eat. Everyday events like this have their challenges for every family but more so for mine due to the complexity of my sons needs and the fact we need to balance his needs with that of Naomi’s and somehow all need to get some chance of eating at least part of our meal. We could have chosen anywhere to eat but that night we opted for the local carvery. No waiting to get orders taken, the kids can see what they want on their plates and we can attempt to eat together without the usual demands for nuggets and fries.

Naomi is a challenge to feed in such places as her diet is so restricted and no-one wants a battle or tantrums in public. But a little mashed potato, a few selected vegetables and a little gravy got her picking at her dinner while quietly colouring in. Isaac had his usual loaded plate and was firing handfuls of food into his mouth like a child who had never seen a dinner before. I promise you they are twins but you would never believe it to see them eat!

However, even with food, Isaac’s attention span can only last a limited time and he was soon clambering over dad with food all over his face and fingers, wanting off to run around. A knowing look and wink of the eye was my signal that I was willing to take the strain tonight. To Isaac’s flapping, smiling delight he was getting mum. He brought a smile to my face even though I was missing out on a hot and delicious dinner yet again. But then I glanced at Naomi and my heart sank. Eyes bunched up with tears ready to explode at any minute, and a tender voice so timidly saying through her beautiful blue eyes ‘I want you to stay mummy’. Oh. This isn’t fair. They both need me so differently. And whatever I do one of them is about to protest publicly. I really must get that cardboard cut out of myself done. It’s the only way I can think of being in two places at once. And tonight I so want to be with both my babies.

I chose Isaac but prayed my daughter would know she wasn’t being rejected. I kissed her cheek quickly as Isaac vanished out of sight. ‘Come find mummy baby when you have finished your dinner.’ Oh Lord, this little girl is going through so much. She shouldn’t have to live like this. No wonder she has such tangible confidence issues and low self-esteem. No wonder she never wants to let mummy out of her sight. It must feel to her like she is second best, her wants and needs don’t matter, mummy prefers her brother. None of this is true but how do you balance the high needs of one child physically and communicationally with the high needs of the other socially and emotionally? Who is going to help the siblings of children with high needs? How can I let her know she is beautiful, clever, wanted and loved when my actions tell her I am walking away to see to the needs of her brother? Dad reassured her and encouraged her but it just wasn’t enough.

So my eyes were on my son but my heart was with my daughter. And God was about to use a stranger to impart a truth into her little life that would go deep into her inmost being.

As Isaac ran up and down in a little garden outside a group of strangers watched on as they drank and ate and talked. You could hardly ignore Isaac’s wild flapping, whooping noises and funny walk. But one young couple were watching him with smiling faces and pleasant eyes. And then little Naomi appeared and held my hand in the warm sunshine as we stood side by side watching her energetic brother. The smiling strangers asked if it was her brother to which she smiled and nodded. They invited us closer and handed her two coins, one for her and one for her brother. So very very kind of them. And without prompting Naomi said thank you.

We exchanged a brief conversation that her brother had special needs and that the children were twins. The lady reached into her handbag and fished for something. I hoped it wasn’t more money. She found what she was searching for and beckoned Naomi nearer. Looking my precious daughter in the eye she spoke lovingly and tenderly to her as she asked her a question.

“Would you like to see a picture of the most beautiful girl in the world?”

A whispered “yes”

To which the stranger opened a little love heart make up mirror and showed Naomi her reflection. To see my daughter smile and touch her reflection as she realised this stranger was talking about her was incredibly touching.

“You are so beautiful. Inside and out”
“Every time¬†you look inside here remember you are special”

The words of a stranger. But exactly the words of God as well. Not to mention the exact words she needed to hear that day.

The lady gave her the mirror to keep and Naomi has barely let it go since.

I thanked the lady and her partner for the coins, the gift and the joy they had brought to my heart. But how do you truly thank a stranger for saying exactly what your 4-year-old needed to hear? I thank God once again for putting people across our path in exactly the right timing. And I thank God that the next time we go out it is mummy who will be staying with Naomi too.

I believe we all need to hear this message too. We can all feel left out at times, or second best or not loved. And every one of us needs to know that we are beautiful inside and out. We are special. And Naomi now loves to tell me “Mummy I am the most beautiful girl in the world”. Yes, baby girl, you are indeed.

mirror

Special mummy to a special child

isaac pjs
I’m a special mummy to a special child
Many a day he drives me wild
The endless screaming, the lack of sleep
The strangest things he has to keep
God grant me patience for this beautiful child

I’m a special mummy to a special child
So many forms that need to get filed
The constant meetings, the daily calls
Recording his biting, his seizures, his falls
God grant me strength for this beautiful child

I’m a special mummy to a special child
I will never forget the day he first smiled
The day he said ‘mum’ and looked in my eyes
The day he first walked was a lovely surprise
God grant me joy for this beautiful child

I’m a special mummy to a special child
Other folks looks can get me riled
When he’s spinning and flapping and licking the floor
When he’s finished his meal but still screaming for more
God grant me grace for this beautiful child

I’m a special mummy to a special child
Hence my grass has grown long and my washing has piled
I’d rather spend time with my wonderful boy
While we run in the garden and he shows me his toy
God thank you for giving me this beautiful child.

Just Watching

Sometimes as a parent the best thing you can do is just watch. Take a step back and not always lead the play. Just be there and watch. It is so beautiful and makes me so proud just watching my children. Sometimes I watch them quietly playing, or engrossed in a dvd or splashing in the bath. Even the simplicity of watching them eat makes me smile so much. I’ve loved watching them and looking at them and savouring every minute of their presence since the moment I set eyes on them over 4 years ago now. I watch them and cry. Watch them and smile. Watch them and feel so utterly blessed. Watch them with pride and joy. And sometimes watch a miracle unfold right in front of my eyes.

By just watching I saw Isaac do something utterly amazing last Sunday.

I had taken the children along to a church service and brought with us the usual loads of toys, snacks, nappies, wipes, in fact pretty much everything two 4 year olds could possible need for a few hours. Including the portable dvd player! I set up a space at the side and set up their beloved Peppa Pig dvd playing very low and spread some toys out before them. I was enjoying the church but was also carefully watching my children too. Some of the toys were related to Peppa Pig as Naomi likes to often reenact parts of the dvd in her play. Pretty normal four year old stuff. But Isaac has classic autism. He is nonverbal and has severe learning difficulties and global developmental delay. He is more like 2 than 4 and a half. He normally eats Naomi’s Peppa Pig figures or scans the toys across his eye line. But as I stood watching him that Sunday evening he picked up a few figures and used one to pretend to climb the stairs of a toy slide and then slid the figure down the slide. He then repeated it a few times with some of the other figures. I wanted to scream from the highest rooftop I could find. I wanted to dance with joy. I had just watched my child for the first time ever in his life use a toy appropriately! He knew the toy represented a slide and he knew what the figures were supposed to do. He had watched clips of them doing it so often on his dvd, he had even used a slide many times himself but up until that moment he had never reenacted anything he had seen before or used a toy for it’s intended purpose. His special moment lasted barely a minute before he started to once again chew the slide and figures. He hasn’t suddenly discovered how to use all his toys for their intended purpose or stopped chewing and biting everything he sees but I watched him do something amazing and I will keep watching him and encouraging him and playing with him until I see things like this more often. I’m watching out for more progress.

Naomi doesn’t like to be watched though so I sometimes have to be sneaky. She is incredibly self conscious and has a sensitive nature. She gets distressed if I watch her make a mistake. I would love to watch her reading books to herself and retelling stories we have read together at bedtime so often. But she freezes up and gets distressed at this so I watch from a distance and enjoy hearing her voice from afar or listening to her through the baby monitor. She has the sweetest voice and is such a natural storyteller.

But Naomi gets great enjoyment from watching other people. Her nursery comment regularly that rather than join in activities she prefers to stand aside and watch. She learns so much from watching others at play, watching the teachers explaining things and watching others join in games. Social interaction of any sort is a real struggle for her and she needs that time to watch how others play together to learn the social skills that other children gain so naturally. She loves watching people. But then again so do I.

I love watching other parents fighting for their children and winning battles. I love watching parents just enjoying their children and grandchildren at parks and swimming and soft plays and having fun. I love watching children laughing, joking and playing in the warm sunshine. I love seeing couples so in love strolling hand in hand. I love seeing older people sitting on park benches remembering precious memories. I love watching mums with their young babies, fathers kicking balls with their sons, neighbours talking to each other over fences. I love seeing people happy. I enjoy just watching.

I am getting so much comfort from the fact God is watching me too. He loves watching me and savouring every moment of my presence the exact same as I do with my children. He watches over me and cries. He watches over me and smiles. He watches over me with pride and joy. He watches me to teach me and instruct me. He loves watching me because I am his child and he loves me. Like I am with my children he just loves to watch me and listen out for me.

“The eyes of the Lord are on the righteous, and his ears are attentive to their cry” Psalm 34:15

I love just watching moments like this with my precious children:
sand pit