1 I dropped a breast feed and used a slow teat as he was aspirating as a baby. I did this my instinct. I was told to then not breast feed at all by hospital as he had fluid on his lungs but it took the NHS 3 months to diagnose all that.
2 I spent a long time at playgrounds as he enjoyed the twirling around play equipment.
3 I spoke to him through his cranium and also read to him through his skull again done by instinct for which I was hugely praised as I had instinctively used his skill as a hearing aid. He learnt to read at 5 despite no hearing aids and hearing on 50 to 80 variable decibels.
4 I learnt to do emergency first aid for choking and fits etc This made me feel more confident and on many times I had to get balls of stuck bread out of his throat.
5 I became a master at cleaning up wet poo from legs and the floor caused by overflow.
6 I read lots of books on speech development. I would follow his conversation such as it was and then remodel the language correctly and never correct.
7 I learnt to mentally switch off when asked for the 100th time in an hour ‘how was your day mummy’
8 I devised and ongoing saga of the Guinea pig hotel in which our pigs wrote letters to the management and complained about the hotel. My son was the hotel manager and had to talk letters back. This encouraged him to talk.
9 We played secret sky on a mission to convey a message daily to build up working memory
10 I learnt to not try to queue but buy a radar key for the toilets when he was having issues with his bowels.
11 I allowed him to hypofixate on a topic of conversation and frankly I would switch off but then would reel him back to language practice and to and fro. Our conversations still have elements of this where I will suddenly step in and reconfigure back into a to and fro as opposed to his diatribe on the development of say the Indian State.
12 I cleverly got him to hyper focus on things I like eg History but even so —— I can’t like that much History.
13 I developed his talking skills with 1:1 Drama lessons.
14 I told the most fiercest but loveliest drama teacher who only took the best drama students that he came as a package with my drama scholar daughter. She loved him and called him ‘package’ thereafter. He went from nursery rhymes at aged 10 to winning a coveted place at National Youth in 5 years.
15 I learnt not to be hurt when he reassured my constantly that he would resurrect my mother by digging up her body and sticking electrodes into her.
16 I learnt that there are alpha parents at schools and not to fret. My daughter was an alpha pupil and in high demand and my son was unwanted mostly. You learn who the good people are and you will always cherish those who included you and your disabled child.
17 I learnt to avoid places eg fun fairs, amusement parks, bonfire nights and some loud shows. Oddly he enjoyed some musical and loved the theatre but he was trained young. City centres are tough but manageable at nights if my husband was there Recently my son has become more resilient and can now walk ahead even without clinging but it’s variable. I learnt the hard way that city break holidays are not ideal no matter how many museums there are. He can just put on one of those VR giggles and see the pictures. So best stick to quiet holidays eg beach or countryside and maybe dip into towns.
18 I would take opportunities when things were quiet to train him to queue and pay for things but not when things were too busy.
19 I learnt to love bus drivers who put people in their place eg told someone to give my son a seat after my son had repeatedly got on and off the bus to avoid being touched. The bus driver refused to carry on driving and said ‘can someone give this lad a seat.’ They are the best at helping eg telling someone their shopping can go on the floor and does not need a seat.
20 I learnt to walk miles when the bus was not on the agenda as they were too packed
21 I learnt to cook well so that people wanted to come to my house and we could have a great social life
22 I never expected much but was touched when friends prepared quiet rooms and plates of food for my son. You learn who the good people are.
23 I learnt to say thank you a million times for peoples kindness and generosity eg people will run to stop a bolting child. Friend helped my with tribunal. Friends have had my son overnight even though he wakes them at 4 am to go home. I would be lost without my friends.
24 I learnt to love teacher who really try hard and don’t get the resources or funds they need. We are on the same page and parents need to work with teacher. I feel guilty for not still having sent a lovely head a present but the lest time we spoke my son was throwing shoes across the corridor. In the main, teacher are kind people who are trying their best.
25 I learnt not to beat myself up. I can switch off and not have to teach my son all the time.
26 I learnt that exercise was key also for him and we have lots of exercise built into his timetable
27 Obviously I learnt his mannerisms and when he is in distress. I learn to cut things off at the pass or before they go into table throwing mood. I learnt to deal with his talks of suicide etc by redirection to positive thoughts. I have also learnt to manage my own expectations of what he might achieve or manage and then be pleasantly surprised when he has achieved more.
28 I have learnt that what seems unobtainable or unachievable can actually be both obtainable and achieveable. I have recently watched a wonderful video of a boy reading who is almost non verbal or really challenging. How his mother got him to read I have no idea but she is a tiger mother and fought for her son. They achieved that as a strong unit.
29 Don’t expect too much from some parts of Jo Public he those who huff when you go ahead of their priority boarding. queue. They lack any understanding. They have no idea that we would be in trouble for not priority boarding with said son.
30 Try to find solutions and not make demand eg
. There was one almighty mess up on a plane and the panicked air hostesses had a meeting before my son boarded as the airline had forgotten to put son next to me despite that being logged on the system.
They wanted to move someone but I did not want people put out. So I asked the person adjacent to my son if he could just introduce himself so he would not be a stranger. Oddly this worked and they even shared a bit of a conversation. It was a fantastic learning opportunity for my son and we felt very proud of him. ( he was going though an ocd issue at the time re dirt as well but luckily the person was very clean).
31 I am learning not to look ahead to when I die. I worry so much about who will look after him and where he will be. Who knows what will happen but having panic attacked does not help him or me. I worry about my husbands health and want him to stay healthy for as long as possible not only because he’s my husband but also because he is my son’s anchor against the world. At times the pain or worry is huge but I have learnt to call friends who will even drop work to come and be there for me . It’s not often but sometimes the panic is overwhelming. Yes I have spoken to the GO who thinks that I have a problem solving brain to the problems and can talk myself back into shape .