I think it’s a matter of recognising the grief for the children you hoped to have but did not have but also realising that you have to plough on. It’s a hard juggle but you are entitled to feel as you do to a degree but then your kids need you so you just have to brush yourself down and get on with it. I did this my taking myself mentally away from conventions ideas of successful parenting and giving myself my own goals. By ploughing my own furrow I was able to cope mentally with things better.
For me, to overcome any negativity, I had to accept and celebrate my son’s differing achievement. At an early stage Portage helped me with this, so when other kids were doing jigsaw puzzles at aged 3, I celebrated the fact that my son could put a ball though a toilet roll.
Up until the age of 11/12 things were a blur as he was hugely developmentally delayed eg intermittent speech with gobby gook and poor motor development eg not learning to touch his nose until aged 11. However, as I had been told that most likely he would have global delays, the fact that he could talk, walk and sort of run ( if not alternate feet at that time) was a brilliant thing.
I sacrificed everything to educate him. Due to a clear and ambiguous NHS report ( he needed 5:1 class size) we were offered funding for SEN schools but thy were boarding schools miles away. So I kept him in mainstream but taught him at home in the evenings/ early mornings.
I read about the positive impact of Drama and persuaded a Drama teacher to take him on. This was better than language therapy that I struggled to access privately and his scant direct SALT was not that useful/ they turned up late / did half the session and then at review wrote the SALT out and said he would never get better.
I read about every OT exercise and did those at home with him as his scant direct therapy was inadequate, I paid for 1:1 swimming lessons to help build up his muscles even if he could not improve his muscle tone.
I spent hours doing memory exercises with him. I walked him home ( over an hour each way) and we did mental exercises including writing imaginary letters to his pets ( to encourage language skills, memory and social understanding).
He went from P level poetry recitals ( nursery level) to learning Shakespeare in 5 years. He got into National Youth Theatre.
Throughout this, I was constantly told by school that my ambitions for my son were unrealistic and to accept that he might end up with no qualifications. He got GCSES and one good and 2 poor A Levels and is now at university.
Things can change. Some things can improve, some thing can worsen. My son’s moods at times and obsessions have been exhausting. He is having private counselling as it’s beyond our ability to sort it out. His bowel issues have sent me demented. On the positive front I got him a bit of equipment to unblock the loo and he is learning to deal with this himself to a degree.
He is currently obsessed at aged 22 in trying to make cakes [ not cook proper food ) so we have to supervise / support him ( he needs help with cutting, opening packets etc ) There are times that I want to scream when he talks endlessly about what cake he wants to make. I dread him going near the kitchen and feel obligated to supervise or DH has to otherwise he will burn something or chop his finger etc. ( it’s almost blackmailing ie I’m going to try to cook regardless so you had better help me) He had been out all day with me but decided at 9pm that a cake had to be made!
You take what success you have and celebrate it and brace yourselves against the negative. My son expressed an opinion or a need that his PA was too busy on his phone to tslk to him. This was a first that he expressed a need, so a cause for celebration even if the conversation was a sad one. He has been known not to clean his teeth for months because he could not find the charger and I did not know this. ( I felt dreadful when I discovered this as I should have been more vigilant and actively checked everything eg is he shaving / is he properly brushing his teeth) So I now know thst I have to supervise more closely his routine and not just prompt ( he will say he has eg changed his t shirt but he had not). The fact that he expressed a need/ opinion about his PA was therefore huge.
You have to find your own sense of achievement and your own ideas of ‘success’ as a parent, I hear parents talking about their kids struggles at school when they are heading to top universities and let it wash over. I’m not in the same space as them.
It used to hurt me so much when my son was young but now it does not hurt as much. It was hard to see all the boys form friendships over football and see the parents form attachments that way. It felt like a club that I was not part of.
I think that the exclusion and isolation you feel as a SEN parent is the worse thing. It’s not only your kids but you who are othered.
Eventually you go to groups and as others say you find your own tribe and support each other.As your kids grow up they will find their own groups maybe and that also helps as they feel happier in themselves knowing that they are not alone. There is a lovely disability group my son goes to and looking at them all together I think it’s a nonsense when they talk about invisible disabilities - maybe at some level but not at this level. They are an obvious disabled group but all lovely together.
For me, it’s still rubbish at times, it’s exhausting having to arrange the PA times, the therapies, work experience and mentoring sessions. It has defined my life - I tried to go back to work but I had so many endless meeting for my son’s transition it was impossible. My son still needs weekly counselling. We can’t have a holiday without DS without getting social services panel approval for PA hours. I feel trapped at times. I have a DH who is relatively successful but his work is long hours. I feel lonely at times.
However, I try to get comfort from all that my son has achieved which to many might not seem so huge but to me has been a miracle. He most likely will never live independently but I will make sure that he has a rich and rewarding life full of interest and try to make his future as secure as possible.
So I guess what I am trying to say is that you set your own notions of success as a parent and give your own self a pat on the back when you achieve those levels. My advice is find other things you enjoy and you can do eg I have been learning a language. Surround yourself my positive and caring friends who accept you as a package. ( My friends ensure there is a quiet room for my son to visit as well and give him food there etc). Celebrate the good job you are doing as a parent.
You are a refreshingly honest parent who speaks candidly about your feelings. That in itself is a huge achievement. You are doing a great job and to recognise how tough it is and to speak about it is a great thing. I bet that you have many other achievements and successes. So please don’t be hard on yourself ever. We have all felt miserable, low and trapped. It’s normal but it does get better.