Here are some suggested organisations that offer expert advice on special needs.
This is a Premium feature
Feeling sad for my Daughter and me(3 Posts)
I am feeling sad for my dd and for me. She is 4, goes to mainstream preschool and has cp, diplegia affecting lower limbs only. She has a twin who is "normal" I think when we are in our own house and our own environment I think she is doing well and making progress. Today we had an end of term event in her preschool. Compared to all the other children it was obvious that she was miles behind the other children and she would be one of the older ones in her class. She was very reliant on her classroom assistant and while all the others joined in and sang she just sat there for a vacant expression on her face and looked lost.
They are one of three sets of twins in their class, the other two perfectly normal and healthy. Today I felt quite emotional and weepy about it that they had what I thought I had and what I should have. I feel it isolates me too. I am not the most outgoing and confident of people at the best of times but it makes me different too as none of the rest of them have to deal with the crap that we do like appointments, statements dla etc. I don't talk to people about her condition. I bury my head in the sand and pretend everything is normal and ok when I'm sure it is perfectly obvious that it is not.
I thought probably naively that it would get less noticeable as she got older but this is not the case. She is due for primary school in September and I am so worried for her moving to a new environment with new children and a class that has nearly double the amount of children that she is used too. I felt growing up very lonely and very much on the outside of things and I can see the same thing for her as she won't interact or engage with other children. I know especially girls form wee groups and can be bitchy too. I know I have been there.
Sorry this has turned into a bit of an essay. When I was pregnant none of this even entered my head that I would have a child with a disability. It just feels very cruel and unfair especially in a set of twins that I have a direct comparison of what my dd should be like.
I understand how you you feel.
I had really bad social anxiety as a child. Then things seemed to go well for me. I met DP and we had two children and I thought finally everything was going perfectly.
The one thing I hoped for DS1 would be that he wouldn't have any of the problems I had making friends. Then he was diagnosed with autism. He's high functioning but has big problems making friends and paying attention at school. It just feels really unfair.
Like you, I'm not confident. I'm unsure what to say to other parents. I feel like I'm having such a different experience of being a parent than them. I can't really relate to them. I feel cheated that we don't have their more care-free life. I don't want to be the one going to appointments with the school to talk about DS's problems.
Also like you, I often feel reassured that things aren't so bad with DS and then I see him in another context and I shocked at how different he is. With certain people he is very 'alive' and engaged- but I took him to a birthday party recently and he played by himself while all the other children ran around excited to be together. Also, I thought he was doing ok at school as his reading and writing are really good but I had a meeting with the school this week and it seemed so negative - there's tantrums, lack of attention, can be a bit rough in the yard, no real friends, etc etc. I left feeling really down.
Sometimes when i see other boys his age I look at them and how normal they are and think how unfair it is on DS1 that life is harder for him
It can be hard. I think I'm slowly coming to terms with it... Very slowly
I relate to so much of what you say. I feel it too. You might remember me from the CP thread. Dd is also 4, starts reception in September.
I am dreading starting reception too but I realise this is down to my feelings and issues. DD is so excited about her new school. She had a visit and has talked of nothing else. I try to remember that DD is happy and that should be all that matters.
I don't want dd to be disabled, I want her to be as able bodied as her peers and not struggle with mobility and the things we take for granted. I want life to be easy for us. It should be now she is 4 but it's still bloody tough. I try to tell myself there is no point feeling like this because what I want and what I have are completely different but it is still an overriding feeling. I do find it comes in waves, there was a longish period of time when I felt like I had accepted our situation but over the last few months the negative feelings have resurfaced.
I too find Seeing DD with her peers tough, although all her reports speak highly off dds progress, seeing her alongside typical 4 year olds really highlights the differences and this makes me incredibly sad and worried. I worry about what people think of DD, I don't want them to judge her. I find I tell people very early on about her cp but I feel I have to as to justify why she isn't able to tear around the playground and play like the other children.
I know I must stop comparing but it's difficult not too. I even compare to her older sibling. Having a twin must make this doubly hard for you Albaba.