In The Genes?

I rarely write about my big girl, my 18-year-old, if you have read my previous blogs you may be aware that she has not lived with me for 11 years now, it has been a hard slog to get to the point where we are now, that she has made the journey alone to come and visit is something I have waited many a year to happen, and I never thought it would.

My daughter has complex needs, at 18 she finds general life hard to cope with, going shopping is an extremely difficult thing for her to do, her self-esteem, her nervousness due to being unable to count change or follow a shopping list, makes day-to-day life a struggle. Until recently she was unable to take a bus alone.

She has in the past self harmed, and at one desperately low point, made an attempt to take her own life, thankfully it was a feeble attempt, more a cry for help and attention then having thought it through.

My daughter’s diagnoses is still a mystery to me, perhaps on the autistic spectrum, definitely  some severe mental health issues.

She struggled for years through the school system, could never keep up with the work and had little or no friends.

For many years, and still today I hold myself partly to blame for the person she has become and the struggles she faces, even if I am told over and over, even if I rationalise with myself that even if she had been bought up in a stable environment she may still have difficulties I still hold myself partly to blame. When she was a very young child I became very ill (mentally) and she lived with a family member following my divorce from her father, living there, even as a small child she was always aware of her difference, knew she was not one of them, she then went to live with my ex and his new wife, again she felt that they to would reject her, they tried their best but sadly the professional help and support both she and they needed did not arrive for many years, by then the damage had been done. Over the years people have asked me why I did not go to court, why would I sit back and let her live with my ex in another town, seeing her only every 4 months or so, just for a day trip.  I did not have a choice, from the very beginning at a time I was unable to care for myself let alone my daughter I was told this was the best for her.  Due to my mental health decline,  I knew that if I had indeed gone to court to fight for custody I would not stand a chance. There have been so many times that I wanted with all my heart and soul to grab my daughter and run away with her, but I have known that she can not handle change, that it was best for her to stay there, and so for 11 years I have put my own pain and hurt aside and have done what all parents would hopefully naturally do, the best for the our children.

Around a year ago, after a drastic few months when my daughter walked in to a main road in the hope of being knocked over, she was finally accepted and funding was found for a specialist college, a place where each student is given the chance to be the best person they can, gardening, music, life skills, making mugs, bags etc to sell are all part of the daily timetable, for the first time in her difficult life, she is happy, she feels in her own words ” she has come home” when attending college, she is also the most able in the college which has contributed to her self esteem slightly rising.

Today, as always when she leaves I am full of a heavy sadness, saying goodbye to her, after spending just over 24 hours with her its always painful.

she has been on medication for a while now, after a bout of self harm her step mum realised she needed to be on medication and thankfully it is helping, but I see myself in her in so many ways, last night she noticed a book I have on Bipolar and she asked me to get it for her as her Dr has begun to suspect she may have it.

It was a mixture of relief and sadness for her when she told me this, relief that finally things may start making sense for her, and sadness that I have passed my mental health issue to her.

I have written a blog re Bipolar and obsessive thinking, and this was confirmed for me during a conversation with her, she explained to me that she went through a period of not sleeping, not eating, crying non stop as she struggled with obsessively thinking about a boy in her college, she could not concentrate on her lessons, she began to self harm again.  It was as if I was hearing someone describe my thought process when having an episode of obsessive thinking.

Whilst the pain for her is still there, so is the hope for her, the fact that she has a diagnoses, the way she thinks and acts explained via the Bipolar “label” will eventually make her life a lot easier, she has the advantage of knowledge so young, and even though it is not something any average 18-year-old would want for themselves for her it has given her courage, she can accept her diagnoses, and work with the experts to encourage her to lead the best life she can.

Interestingly, it has given me a sense of closeness to her that I did not have before, it is sad for her that she has experienced in her life so much pain and suffering, but I can now help her, through my lived experience of bipolar I can help her, empathise with her, know that with the correct help and treatment there is no reason she should not live a happy, fulfilling life.

How I wish that my daughter did not have any mental health issues, that she would never have to struggle with her thoughts and feelings, that her self-esteem was high, that she sees what I see, a beautiful young lady with so much to give, a girl who has a bond with children whom have special needs, a teenager who has had to fight for everything and has accomplished so much ( for example teaching herself sign language so as to be able to converse with a little girl she looks after, something she hopes to continue doing and eventually having a profession as a sign language interpreter in a hospital etc), but as she grows I see a positive future for her.

Till recently having a diagnoses of a mental heath disorder such as bipolar was a shameful secret, but now, I see how happy she is to have been given an explanation of how her mind works, and this is an attitude we can all take a lesson from.

“Keep him at home” she said ….

Usually I write about what I know, basing my writings on knowledge gained through life experiences, but today, and forgive me if I come across as ignorant I feel the need to write about something I do not know very much about, and that is autism.
I have a daughter who is somewhat on the spectrum, but as you will know if you have read (and thank you if you have!) any of my previous blogs, the relationship I have with my daughter is so complex, and therefore I am not fully aware of the intricacies of her needs, but I do have a very good friend who has a child with autism.
Today I spoke with her, she told me about how the long holidays have been an eye opener for her, how as her son grows and  his needs become more complex  people  she meets react to her, she sadly related over an experience she had today whilst in a park with her son, whilst he was playing in the sand a lady rebuked her for her sons behaviour and informed her “children like that should be kept at home”.
 In my mind, it is irrelevant whether her son was sitting quietly, or throwing around sand, or acting out, what is relevant however is how people reacted to this little boy, a young child whose appearance shows no sign of having an extra need, or as we often say a “special need” he is a tall, well built boy, with beautiful eyes, and a beautiful soul, yet when he goes out there are certain things he needs, again I am not an expert and am not fully aware of his needs, but for example if things do not go in the way he expects he will react, in a more extreme way than some children will.
Till a little while ago he could not go on a bus, he would fuss loudly and my friend became used to the stares, and the disapproving shakes of the head, she became used to having to push him in a specialist buggy, she became used to people judging, and making comments to her, but however used to something we are, the reality is, it hurts, it hurts so much when you give and give and give, and then one unkind, insensitive comment takes all the hard work that you are so proud of and grinds it in the mud.
He has come so far, when I saw my friend with her son today, he proudly told me ” I went on the tube without my buggy” he was so proud, he felt a million dollars at his achievement, and we shared a high 5 in happiness. He managed to walk a distance and made it to the park feeling great, yet whilst playing in the sand he noticed, and my dear friend noticed, and was aghast at an adult, pointing her finger, laughing and showing her children the little boy who was not acting in a way she considered “normal”, and all the pride and joy both he and her felt was cast aside and the crushing sadness replaced the joy.
Autism is in general an “invisible” disability, upon seeing my friends son he looks like any other child, but he is not, he is different, yet that difference makes him sweet, kind, caring and so loving, I know that I will always get a hug from him ! , sure it also makes him act out when he experiences something unexpected, or becomes upset, but which child does not?
Yes his reactions may be extreme, but to him routine is so important and so is knowing that he is loved.
I have seen my friend give her all to him, I have seen the love, care and pure, unadulterated devotion in every way possible she gives to him, from never giving up on him being accepted in to a school that was perfect for him, even though it seemed financially impossible, to patiently replacing household items that have been damaged when he is upset. I have seen my friend gently tending to him when he has lashed out, and never has she stopped, she carries him in her arms and heart.
We often complain about the behaviour of our children, but if others criticize their behaviour we will do anything to defend them, imagine the hurt if our child could not regulate their emotions, and lashed out in frustration, if we knew that our child was trying as hard as they possibly could to live the life they were given but struggling from the moment they woke to the moment they slept, imagine others shaking their heads, telling us to keep him at home, that he should not be let out in public.
She tells me, that people are so good, how they came to her defence in the park, how they told her “your doing a great job” and she appreciates those people, those are the people who give her the push to carry on the amazing way she is looking after her son.
I guess my message would be, we don’t know, we cant know, because someone does not look like they have a disability, because the person may not be in  a wheelchair, or have a special need such as downs syndrome, which is easily identified it does not mean we have the right to look, to shake our heads at a child’s behaviour, we can not judge we should not judge.
I have utter respect for my friend and so, this is dedicated to her, and to the millions of other parents who tirelessly work to give their children with an “invisible” special need the best life they can have.
Lots of love
Sara

Blog at WordPress.com.

Up ↑

%d bloggers like this: