I don't really know where to start. I've "ummmmmed" and "aaaaaaahed" about writing this post for several days, and then tonight something happened which made me think that I really needed to write it all down. To share with you what it's like here, for us, all the time.
I have two wonderful daughters. They are both delightful, funny, bright, lively girls who make my life an exhaustingly spectacular and marvellous experience. I can't thank them enough for their generosity of spirit, kindness and general good nature and how that makes life so much more pleasant for me, their mother.
However, they are very different children. Firstborn is outgoing, easygoing, musical, academic, sporty and seemingly rather popular with her peers. Lastborn is also quite popular with her peers, but her story is somewhat different.
When Lastborn was several months old, we went to visit my grandmother. She has a lot of experience with children and when she exclaimed that she'd never heard a noisier baby and that I should have her hearing checked, it confirmed what I had been thinking. Lastborn rarely cried. So rarely that I have no memories of her having cried although she must have done. What she did do was shout. Normal burbling baby noises but at a very high volume. So I had her hearing checked and the Paediatrician told me all was well.
Since then, I've been fairly certain that the Doctor got it wrong and Lastborn did indeed have some hearing loss. She is very difficult to communicate with from a distance, and if you want her to pay attention to you, you have to insist on eye contact, something which she often finds challenging.
Recently Lastborn had another hearing test, at my request and against the wishes of her father who believes that this is all in my mind. They discovered some hearing loss in her right ear and have asked to see her again in 6 months to determine the next step, whether or not to consider hearing aids.
At the time of the test, the audiologist laughingly drew my attention to the manner in which Lastborn had completed the test, noting that the excessive ordering of the beads she had been asked to thread together was not entirely "normal". She assumed that I was also having Lastborn tested for behavioural and developmental issues, specifically Autistic Spectrum Disorder.
From very early on in Lastborn's life I have been aware that she is "different" from other children. At first I put this down to the naturally occurring differences between siblings, but gradually became aware that some of the "differences" were beyond what could be considered to be usual for a child of her age.
During her short life, she has experienced a lot of extreme changes. Her father moved out of the family home before she was two, and later we moved countries and houses in order to be closer to both him and my family. However, Firstborn also experienced the same changes and has responded in a way much more closely affiliated to the textbook responses.
I didn't wish to jump to any conclusions, but when the nursery I paid for Lastborn to attend suggested that they might not be able to keep her after only two weeks, I began to take more notice of her behaviour. I began to think that it was me, the parent who was at fault. After all, when she was with her father he reported no odd behaviour and in fact told me that it must indeed be either a response to me, or entirely fabricated to suit some purpose of my own. This shook my confidence as a mother, and led to me seeking to remedy Lastborn's behavioural "tics" by being a better mother, a more vigilent parent. To an extent this appeared to have an effect, and together with a strict contract drawn up with the nursery, Lastborn appeared to be adjusting better.
Over the following years, I observed Lastborn playing, both alone and in groups or with her sister. I noticed that she found it very difficult to play any game in which someone else determined any of the rules. This might have just been considered bossiness, but it seemed to be more extreme than that. If the rules were broken she simply couldn't continue to play the game. She enjoyed repetition, so much that she even wore out her sister's impressive patience, insisting that they play the same game, the same way, over and over again with the same outcome.
At the same time I noticed other traits too. Lastborn seemed unable to process instructions of more than 2 parts and would "freeze", doing nothing at all rather than attempt the first part. She has no fear of danger and is still in a position where I must explain that roads are thoroughfares for motor vehicles and therefore not safe to run out into. She will quite happily run in front of traffic even so. Holding her hand can be problematic since she has an oversensitivity to touch on her palms and will therefore pull away sharply and run off - often across busy roads, or in supermarkets where I will find it difficult to find her.
She has no sense of the appropriateness of touch and will hug strangers suddenly in the street. She also can hurt her friends by being overly strong in her hugging of them. At the moment they put up with this because they like her other qualities, but I can sense a time coming soon when that allowance will fade, and Lastborn may end up feeling very isolated when her friends reject her for her behaviours.
There are many other "symptoms" I could list of Lastborn's differences. Her almost total refusal to eat using cutlery, instead using her hands. Her withdrawal can be total if faced with a large group of noisy, or fast moving people. In supermarkets I have to confine her to the trolley so that she doesn't either run off or destroy the displays because she can't tell me in words that she can't cope with any more visual stimuli. Her conversational difficulties because of her frequent use of non sequiteurs, it seems quite charming at the age she is now, but soon it will be yet another sign of her "difference".
Lastborn is now 7, although her behavioural differences mark her out almost as a toddler. She shares many toddler characteristics and it is for this reason that I have waited until there is a significant gap between her chronological age and the age of her behaviours before asking for tests to be done by the Paediatrician. There are some behavioural traits which she happily seems to have outgrown. She no longer attacks me physically because of her own frustrations, and I am hopeful that some of her other behaviours will follow suit.
I would be happy for her father to be right, and for it all to be in my head, but I fear otherwise. And I want my daughter to get the help she needs to continue keeping up developmentally with her peers. I will fight like a lioness for my children. I will ensure that they both have everything they need to equip them for their adult lives. No matter what.
So that is the short synopsis of the background to the events of today. The events which spurred me on to write this post. They centre around an activity which I saw as a saving grace in Lastborn's life outside of school. She loves school because it is very regimented, everything is clearly set out using a visual timetable, and day to day not a lot changes. Everything happens at the same time, she is required to sit in the same seat at the same table, hang her coat and bag on the same peg and sees the same people in the same setting every single day of the school term.
After school life is less straight forward. Lastborn likes structure, she likes activity, but until this year it was hard to find places in which I felt she would be comfortable.
A dear friend of mine suggested Karate, but there was no class offered nearby. There was however, a Taekwondo class for her age group which had places. We went along for a trial and Lastborn immediately adored it. It was structured and regimented and had all the attributes which she found simple to get to grips with. It also gave her a legitimate outlet for her need to be physical, but within a safe and controlled setup.
The second week, there was a game played at the end which involved a lot of running around and shouting. Lastborn simply shut down. Thumb in mouth, staring at her feet, she became utterly withdrawn to the amazement of her teacher. Fortunately one of the other members of staff has an autistic child and was able to recognise what was going on and "save" her.
It sparked off a conversation between me and the mother of the autistic child which led me to feel that we had found somewhere where Lastborn would be welcomed and understood and her differences tolerated happily.
I was so relieved.
This week is the last before the Christmas holidays, we are all tired, and persuading Lastborn that she wanted to go to Taekwondo was very difficult. She mislaid her attendance book, her uniform and was not keen on going into the sports centre. Eventually she came in with me. The hall was empty and silent, apart from the teacher and the helper with the autistic son.
We greeted the teacher, but before we could get any further she replied with the put-down, "Nice of you to join us!". I was dumbfounded and could think of nothing to say. "You're 25 minutes late!" she continued. I apologised and tried to give a quick resumé of how difficult it had been to get Lastborn through the doors. She simply tutted and tsked and looked at her assistant. By now I was rather cross and asked where everyone else was. It transpired that we were the only people to have shown up for the session AT ALL, but while they were being excused for presumed end-of-term activities, we were criticised for having turned up late.
I felt ridiculously betrayed on Lastborn's behalf. So upset. I couldn't muster a smile when the teacher then told me I was misunderstanding her "humour". Some humour. She knows my child and is in a singularly good position to understand the difficulties I have in getting her do stuff when she doesn't want to. The sense that Lastborn no longer had a safe place to come to was overwhelming. Lastborn had already left the hall by this point, having ascertained that being there was the "wrong thing" to be doing. There was no way I could have got her to go back in without a huge tantrum. I was so close to tears. It felt like a removal of a safety net for my lovely daughter. Yet another place which we couldn't really relax in. I was very cross and upset for both of us.
Lastborn doesn't get upset by events like that. She doesn't really notice them. When I asked her at bedtime if she had minded not being able to do Taekwondo, she looked at me as if I'd asked if she minded not being able to go to the Moon today. She is lucky I suppose. I minded though. I minded for her as well as for me. I minded for all those children towards whom adults have behaved in an equally unthinkingly unkind manner. I really REALLY MIND.
Next term we will start afresh. I will try to put the teacher's words behind me because in reality they are not that dreadful. I was hurt by them because I am supersensitive to the differences and difficulties we face all the time. Lastborn wasn't hurt. She came home and watched a film. To her, the evening was a success. But it could have gone very differently. Doing something outside of her normal pattern could have meant that we had a very difficult time indeed. I suppose I should be grateful for small mercies.
This time, at least, there were no overt repercussions, but I have sadly learnt that there are also no truly safe places for us.