Source: The Insignificant Mother
It started before the meeting even began. Emails, phone calls and discussions between you all to synchronise diaries and finalise a time and location that suited everyone. Everyone, of course, except the insignificant mother. My diary was never checked. No-one asked if the time suited me or if the location was convenient. As long as the ‘professionals’ are fine with it that is what matters apparently.
You all had weeks of notice. I received the letter in the post just days before. You all knew the agenda, I didn’t.
So here we are all sat around the table. I notice you all smartly dressed, folders and pens at the ready and reports all prepared, while I sit there in yesterday’s clothes trying to remember if I got around to brushing my teeth this morning or not.
Introduction are done and apologies made, yet a few chairs still lie empty. It seems some of you have not turned up, again. I realise that every person in the room is paid to be there, except me. This is everyday stuff to you all. Meeting are your norm. Not for me. I am not sure what you all think I do all day or even what you all think of me at all. What I do know is that none of you feel I am important enough to be given a title. The sign in sheet asked me to list my profession and just as I went to write ‘parent’ one of you says ‘you can just leave that bit blank’.
You all get your turn at discussing my child like you know them so well. I want to scream at you when you don’t even say his name right or know his age. I am told to wait my turn. Each person talks about my child like he is a number. He is just one of your case load, a child you will soon move on from, either by discharging or he moves on to another class. I guess I am at least thankful you made the effort to come. Sadly some of your fellow professionals never even gave my son that honour.
I wonder if I will ever get to speak. I have no prepared report to give you all or targets I have achieved. He made it to school today, does that count? He even had breakfast..that surely gives me bonus points?
“Mum, do you have anything to add”, so you actually noticed I was there after all! I have lots I could say but does it really matter? If I disagree with anything said it gets recorded as ‘not engaging with professionals’, if I talk about home life I am reminded ‘we must stick to the points in question’, if I ask to be reminded of something that was discussed ‘we have covered that point and you will be able to read it in the minutes’. What do you actually want me to say? What you really want is me to tell you all how wonderful you are and how grateful I am for your input. You want me to pat you on the back and boost your ego and bow down to your authority. You all hold the power in these things and I am just the insignificant mum.
The meeting closes. You all return to your cosy offices, your clinic appointments and your computers.
I return home to the non verbal screaming child. I return home to the little girl refusing to eat. You can tick you box to say you had your meeting, you can record who attended and who didn’t. Please do send me the minutes to file away with the large pile of reports and factsheets I have already.
One day I may get around to reading them. Right now I have a diary full of hospital appointments and two children who need a huge amount of support. You may like to record at your next meeting that the person providing all this support day and night, unpaid, and out of love, is the insignificant mother.
Insignificant to professionals maybe, but hugely significant and loved by the two people who count the most.
We have waited 5 months to see a dietician as my daughter’s weight kept dropping and the list of foods she would eat became less and less. With a complex diagnosis no-one seemed to know exactly who she should see to help her, so as usual we were passed from pillar to post. We had high hopes that finally we could get some help and support.
The appointment went well. We did everything we were asked in terms of listing all she eats and drinks and giving a comprehensive background. All seemed good.
Yet once again all we left with was…a leaflet listing foods of different colours she may like to try!
Really? Do you not think I have googled similar in the last five months of waiting?
Dear dietician, my daughter needs help, not a leaflet.
A similar thing happened when her brother was referred to physiotherapy last year. We were added to a waiting list and it was months before we heard anything. Finally we were offered an ‘initial assessment’ which, in this case, was a home visit. Once again we went through all the motions and assessments and gave a full medical background. The therapists talked about how delayed our child was and suggested lots of things that could possible be done to help. I was getting excited. My child needed this service and it looked like we could finally see some progress. After all this is a child who was so physically delayed he never started to walk until three years old. She left without giving us another appointment. I should realise what that means by now.
A week later we received the report in the post with a leaflet with some exercises to do with our son that may help. A leaflet? She said he needed therapy yet all we were given was a leaflet!
Dear physiotherapist, my son needs help, not a leaflet!
Waiting to see a dietician and a physiotherapist was nothing compared to the wait we had trying to get both children diagnosed with autism. My son was first verbally diagnosed at just 21 months but it took until he was three years and nine months, two full years later, before he was officially diagnosed. His twin sister was first picked up at aged 3 but it was 23 months later before she had her formal diagnosis. That sort of wait is not uncommon. When you wait all that time to then be formally told your child has a life long communication disorder, and in my sons case significant learning difficulties too, you want and need so much. You want signposted to organisations that can help, to support groups, to professionals who can support your children. You need people to be there to support your children and yourself as you start this new journey.
Instead I left both times with just a leaflet in my hand.
I am not sure what I thought I would get but that leaflet seemed so little, so pathetic and so inadequate.
My children both desperately need speech and language support. My son is now seven and a half and still non verbal. Neither of them have received any direct support for almost two years. Of course, if you asked the service why, they would say they have helped us. In what way? Why of course they sent me out some leaflets!!
I have a huge collection of leaflets now. I feel fobbed off by them to be honest. The money spent on these leaflets could so easily go towards real therapy that could make a huge difference to my children and so many more.
If I make a formal complaint I know exactly what will happen. I will be posted out another leaflet on my rights as a patient and where to complain to.
I haveaccess to the Internet. I can work Google and I am able to find this information myself.
I do not need another leaflet!
Dear health service,
I love you dearly but I feel so let down sometimes. You seem to have a love affair with leaflets and I don’t. There are times when they have their uses but please remember something very important:
My children need real help and that will not come from a leaflet.
Could we get more support from professionals and less leaflets please?
Source: Let them play
Let them play!
My heart is happy. My son is sitting on the living room floor with a large canvas bag and a pile of teddies. He fills the bag full of teddies, takes them out one by one and then refills the bag once again. It may seem very different to what other seven year old boys do but he is playing.
So I let him play.
Sometimes I get right down on that floor beside him and name those teddies. ‘This is Elmo’ and ‘This one is a panda’ and so on. I almost feel pressured to turn his play into a learning experience or a speech and language therapy session. When your child has significant disabilities and delays the pressure to use anything to ‘bring them on’ is overwhelming. But sometimes they just need to be children. Sometimes we need to allow them to explore and learn and enjoy being in their own world.
So let them play.
When the weather is more favourable we like to go to parks. Sometimes we walk about, or have a swing or venture down a little slide. I have to be so careful that any places are fully enclosed and have equipment that can take the weight of an older child still using frames build for younger, much lighter, children. But mostly our biggest problems is the general public who see my child licking the equipment, or flapping or running around in circles and they mock. And while he knows no different, I do. So he loves the baby swings, so what? He takes a whole lot longer than other just to climb up a few steps and manoeuvre his body down a slide. So what? He is enjoying the park, the fresh air, and learning from others.
He is playing.
I can’t let him be in the garden alone. He can’t join a football team or a drama club. He can barely balance enough to run never mind ice skate or dance. But boy does he love a good tickle! Or some rough and tumble play on the bed. He loves nursery rhymes with actions even if he can’t do any of them himself yet. He loves stories and videos and Peppa Pig. He loves sensory activities like lights and repeating sounds. He likes buttons to press, tummies to squeeze, toys that pour out and anything with water. His toy collection is all things for under three year olds. I am totally fine with that because they make him happy.
And they enable him to play.
We haven’t reached the imaginative play stage yet. Or the social play. He can’t read or write or even speak. He can’t kick a ball or throw and catch. Cars are just something he puts in his mouth to chew on. But fill a ball pull full of toy plastic food and he will sit there for ages exploring, looking and rummaging. He loves his iPad. He loves a DVD player. But most of all he loves his mummy.
So before he gets bored of those teddies I am off to play with him. It is one of the most important and most beautiful things a child can do.
However they do it…let them play!
Source: Being mum to an anxious child
What is it like being mum to a child with severe anxiety?
It is helping her downstairs every morning despite the fact she can do it herself. It is reassuring her, yet again, that she won’t fall just because once, several years ago, she heard mum fell down the stairs and hurt herself.
It is encouraging her to dress herself when she is afraid she may fall over because that happened once before and she never forgets.
It is reassuring her that her clothes have been washed and that she has worn them lots before and said they were ‘OK’. It is showing her, as always, that the labels have been removed so they won’t hurt her, the trousers are soft enough and the socks have no sharp bits. It is telling her she is beautiful so often in the hope she will one day believe me.
It is letting her see the breakfast cereal in the box otherwise she will refuse to eat it in case you have somehow bought another brand by mistake. It is pouring out just the right amount in case some accidentally spills over the bowl because she lives in fear she may somehow get in trouble even though she never has.
It is brushing her teeth religiously because the dentist said she should do it twice a day and she worries what will happen if she doesn’t.
It is walking to school making sure we avoid uneven ground because she may just fall and hurt herself and that would be a disaster.
It is going over and over all that the day at school holds because she is worried you may have forgotten her PE kid (we checked three times before we left the house) or she may have done something not quite perfect in her homework the night before. It is the heartbreak of watching her become mute as she walks through that school gate holding your hand like you are sending her into the lions den.
It is watching her walk (never run as you may be pulled up for that!) to her line, avoiding eye contact or body contact with any other child in the playground in case they say something that upsets her or they accidentally touch her. It is looking at her standing facing the front, arms straight by her side like a soldier as she lines up, terrified she may lose points for her class because she is not forming a straight enough line.
That was just the first hour of our day.
My daughter will bite her lips, chew her tongue, barely eat or speak but conform to everything school expects of her. She will inwardly break her heart if she spells one word wrong in a speaking test (and break down about it that night at home), she will freeze during gym lessons when they ask her to stand on a bench for fear of falling. She will take a school dinner as she doesn’t want to be seen as different yet she will hardly touch it. She would never ask for someone to help her cut it up as she is too anxious she may get in trouble for doing so. She would even eat something she was allergic too if she felt it would make a teacher happy.
Living with that level of anxiety is not healthy yet so many children experience anxiety on that level daily.
I can reassure her. I can encourage her and prepare her for change, but I can not take her anxiety away.
Watching her refuse to eat because she had a wobbly tooth was awful. Hearing her cry because she can not read a word in her new reading book breaks my heart.
Sometimes you may see me climb on soft play with my seven year old and think I am crazy. Sometimes you may hear me say I laid beside my child until she fell asleep and you may feel I need to let her grow up. You may see me lift her on and off escalators and think I am keeping her a baby. If you knew I held her in my lap and cradled her and wiped her tears last night would you perhaps think I was over protective?
I am not an overly anxious person and it is so hard to parent a child who fears every moving animal is out to bite her, every child is out to hurt her, every adult is wanting to get her into trouble and every broken toy is her fault.
Her anxiety is huge. Her worries are real.
Today I will do my best to help her as I do every day. Tomorrow she will be just as anxious and I will try yet again to help her. We get through one day at a time.
I acknowledge her anxieties but I also help her overcome them.
That is the role of a mum to a child with severe anxiety.
That is what it is like being mum to an anxious child.