I love that this blog has created a place to bring these families together.
Sometimes, despite our family & friends we feel so isolated.
Surrounding yourself with those that relate…
Is comforting & fills us with the strength needed to carry on with the daily …
battles the system brings!
I’ve heard so many horror stories from parents who in some way or another have been dragged through a system that leaves them both physically and mentally exhausted. Many will tell you, “It’s not their child’s condition that takes them to the edge… But the length’s they have to go to get that condition recognised and provided for!” Most will come out stronger for it… what choice do they have? These are our children and we only want what’s best for them! Every child deserves an education, an understanding environment, a chance to succeed & be valued for the person they are.
Today’s post is not written by myself but from a dedicated reader who I’m so pleased contacted me to share her journey. In so many ways I related to her story, like I’m guessing many well… Helen is a single mother of three. Her eight year old son Max has a diagnosis of Asperger’s syndrome and ADHD… She talks of her challenge to gain his diagnosis and have him educated alongside his peers. Though Helen has been fighting this battle for a few years she still has some way to go… Here she tells us why…
I am a single mum with 3 great kids Lydia 11, Imogen 10 and Max 8 and a half. I’ve been bringing up the kids by myself since Max was 9 months old. I suppose I’ve always known Max was different but things started to go wrong when he started school. I’d already expressed my concern to his reception teacher before he started but this fell on deaf ears and they wouldn’t even consider a statement even though his pre-school teacher had already recommended one. To cut a long story short, every time I picked him up from school I’d be taken to one side by his teacher with a look of horror on her face and asked to explain his behaviour which of course, I couldn’t do as I’m not a child physiologist. I couldn’t understand why they seemed so shocked and surprised as I had already stated that I thought there was a problem but still they wouldn’t request a statement and I felt they were laying the blame on my parenting skills. The pressure became too much and soon i was overwhelmed. i was already being treated for depression(postnatal after Max was born and after the breakdown of my relationship) eventually i had a complete nervous break down and the children went to live with my parents for a few months while i recovered. they went to a brilliant school while staying with my parents and Max’s teacher was sure that he was on the autistic spectrum. When the children returned to me and back to our local school Max was referred to the schools pediatrician who diagnosed him with DAMP. Things still didn’t improve and by this time he was regularly being excluded. He was seen by the ED physic and she very helpfully suggested that Max’s issues were down to him not feeling he had control in his home life(he was 6 at the time) and that mother was known to have mental health issues! Thank you! Although we’d had our problems, the children have a very stable upbringing and the girls were model pupils with no issues at all, in fact they were excelling and still are! At every meeting (and there were loads)! Some teacher/armature physiologist would suggest that Max was emotionally disturbed so I went to my GP and told him that if my son was going to be labelled emotionally disturbed then I would want a qualified physiologist to tell me so and offer him and me( as they were so convinced it was my fault) some support. I asked for a referral to CAMHS but was told it was a school issue! This went on for years with endless pointless meetings and bad advice and opinions from people who had not even met Max. In the end it took me to break down in tears with snot everywhere after being summoned to the school again when max punched the head mistress in the face(and by this point, can’t say I blame him)! And beg them for help. He was finally referred to CAMHS and diagnosed with aspergers (heavily affected apparently) and ADHD. Just after this another expulsion and after that I was expected to take Max to school at 9, pick him up at 10.30 take him home, take him back at 1 and pick him up again at 2.30. After the ADHD diagnoses I felt the pressure from the school to medicate Max and he was prescribed Ritalin. I was very uneasy about this and it worried me that the school seemed so keen. It may have made a slight difference in his concentration but I saw little evidence of this, it did however decrease his appetite and have him bouncing off the walls at night. Max has major food issues probably due to his amazing sense of smell and it’s a real struggle to get him to eat at the best of times and I probably don’t need to tell you about sleep issues! All I know is that the Ritalin made his senses and anxiety go into overdrive and was making him ill so after long discussions with the GP and CAMHS took him off. This was frowned upon by the school and he was excluded that day. I went back to CAMHS and agreed to give another drug a go. Straterra. he took it for the first time on Thursday which was also his first day back in school after me keeping him off for a week because of the latest exclusion. While I was in the heads office discussing the new arrangements a TA came in and told us Max was being disruptive and seemed very tired and was told to take him home for a rest. He was up most of the night the night before because he didn’t want to go back so took him home and laid with him in my bed to try to get him to get to sleep. He suddenly started pointing at mid-air and asking me what was going on because he was seeing flashes of colours! I immediately referred to the literature that was given to me about the drugs but couldn’t see anything about it in there so I looked at the leaflet that came with the drugs in the packet. CAN CAUSE HALLUCINOGENIC EPISODES AND PSYCHOSIS!! I phoned CAMHS and was told not to worry and keep going and told the school about it and they dismissed it and said it would take time to get used to the drug. OH! That’s Ok then! When I took him back this afternoon he started seeing colours again and seems very lethargic and this is frightening him. He describes them as scary /pretty colours. Again the school are not at all bothered. Is it me?? Am I losing the plot to be concerned about this? Does it make me an over protective and neurotic mother to be worried that I might be giving my otherwise healthy child a drug that could make him mentally ill instead of a drug that made him physically ill just so he fits in with societies rules and makes their job easier? Nothing makes sense to me anymore, maybe I’m the one that’s ill! His statement was still 5 months away at this point and by this time I’d found your blog(a god send by the way) this helped me to realise that the statement would probably come back and bite me in the arse anyway so I told the school that I was very unhappy with the way things were going and was concerned about his lack of education so I wasn’t sending him back. On top of all this, I’d been offered a place on an early bird+ course arranged by CAMHS and specialist teaching but was told by the head the day before that I wouldn’t be able to go because they didn’t want Max in school for a whole morning. I was devastated. I desperately need to meet other families like us and need to learn as much as I could. Thankfully early birds have offered me a place in the summer and recommended a book by Tony Atwood which I’m reading at the moment. A meeting was called at the school last Monday where they persuaded me to hang on until the statement comes through and have promised to arrange to have Max until 11.30 and then for me to home educate in the afternoons. I suspect they were given a bollocking by the specialist teaching service for not supporting me. Ok, I’ll give it a go, but I’m not convinced. He didn’t even make through the doors this morning before I was asked to take him home and bring him back at 1.
My issues are that they have treated me like I am the worst parent in the world for long enough. I have done everything that has been asked of me and it’s them that keep moving the goal posts. I’m sick of being patronised by them and it really annoys me that suddenly everyone’s an expert on aspergers ADHD and Ritalin when they clearly haven’t got a clue. They keep telling me that they have never had a child in school like Max and refuse to believe that I do not have the same problems at home. Max is a funny, loving, good-looking (he gets that from me) charming little boy with a brain the size of a planet and he deserves much more than this. He’s being treated like an outcast! How the hell is he gonna come out of this with any sense of self-worth or prospects? Fast coming to the end of my tether and don’t know where to turn next. They treat me like I’m stupid and incapable of making informed decisions. Max has been badly let down by the system because they were too busy judging me! I am beginning to realise that we are at the beginning of a very long and exhausting journey and we will have to fight for everything. I feel very alone and isolated especially with the school timings, I feel like I’m under house arrest! Trying to take one day at a time at the moment but I lie awake at night worrying about the future. At the moment I think Max is shielded by his aspergers, he doesn’t seem to notice or care of other people’s reaction to him. I’m sure this will change in the near future as he gets older. Friends with kids have moved away from us and friends without kids just don’t get it and just see him as a naughty boy. Basically we keep ourselves to ourselves now and pretty much don’t see anyone. I couldn’t be more proud of Max, he’s such a brilliant kid! Him being diagnosed with aspergers came as a huge relief but it has also broken my heart as I’m sure you will understand. Another, unexpected twist has come of this as well. The more I learn about this condition, the more I am convinced that I have it as-well. Not to the same degree as Max but it explains a lot about my life. I have always felt like I’m on the outside looking in. I have always wanted to fit in but never quite managed it. Now that I’m older this doesn’t bother me as much. I find most people superficial and selfish. I’m quite happy in my own company and quite often go out by myself and just people watch. Even when I’m surrounded by people I still feel alone. It has never occurred to me before because even though at times I can be quite reclusive when I’m out and about I have a whole other person and I’m very charismatic (or so I’ve been told) and out going. It appears on the outside that I’m quite confident and comfortable in my own skin but actually I have a very low self-esteem. I read that aspergers can be more difficult to spot in girls because they are more able to hide it. It’s slowly dawning on me that I cope with some social situations logically because I don’t seem to understand the rules. I’ve spoken to my parents who are also learning all they can about aspergers and they are beginning to think the same. I reckon it has come from my dad’s side of the family. Not sure if I should push for a diagnoses or not as it’s probably too late anyway but it might help me understand some of my demons.
I’ve decided I’ll hang on till the statement comes through but unless he is offered a place in a school that welcomes him and understands him I’m pulling him out and home educating. There has to be a place for him somewhere and any where is better than this.
By Helen (Mum to Max)