Denial or Acceptance?

Why didn't we take our son in for an assessment sooner? He's seven now. Why didn't we? I don't know. The doctor asked yesterday.. well he asked if we had noticed anything when he was younger and had we mentioned it to a doctor. Yes and No.

Perhaps it was some deep denial. I had an acquaintance who suggested to me that my son was somewhat autistic at age two, and I quietly but quickly cut her out of my life. She was not an expert in anyway, nor did she have any personal experience, so I felt she was judging my son unfairly. At the time he wasn't talking alot, not as much as the kids in his small play group, and definitely not as much as her daughter. He liked the other mothers in the group, but not her. I think he sensed her judgement, or the fact that she was looking at him to see 'what was wrong' instead of as a little boy. And now of course I cringe at the thought that perhaps she was right, perhaps she saw what I as a new mother could not or did not want to see.

My son never did well in groups, always running off and doing his own thing, never really wanting to sit still, except when I read to him, but we took that as high-spirited, strong willed, etc. But he is loving, not destructive, affectionate and was reading at age 6. If he hadn't started school, I'm not sure we would've changed anything at all. Denial, maybe a bit. I think we accepted him for who he is. The fact that we will not be medicating him no matter what the diagnosis, means that not much will probably change in him. I do think though, that any help in terms of therapy for him, a support group for us might be a good thing. Since we are fairly isolated and don't really get any practical support from family (mine in America, and his about an hour away) it would be good to meet other people in a similar situation. Of course my son as of right now doesn't think he has a problem, its everyone else! Though he did say yesterday that he's tired of being left out and feeling like no one understands him at school.

The doctor didn't have much to say really. He said he will refer us somewhere, I think its family psychiatry instead of psychology which is what we met with last week. I can see now how it is that its taken some people years to obtain a proper diagnosis. What a convoluted time wasting system this is. So now we wait, again.

Back to the doctor..

Its back to the doctor today, this time a different one within the practice, who hopefully will have more knowledge about where to refer my son. This is for Tourette's and Asperger's. We talked alot about this, my husband and I, and know in our hearts that its not just ADHD, in fact, that's probably more on the mild side. What it really seems to be is Tourettes and Asperger's, but in any case we've accepted that our son is definitely somewhere on the autism spectrum. I seem to have already passed through the grieving stage.. I'm sure there's more to come, passing in waves, but right now I'm just ready to get on with it.. whatever it is.

A letter from school came home yesterday addressed to all parents concerning a board of governors meeting about my son's class, which is partcularly troubled ('worst in the school' as we were so confidently told). It said a letter of complaint was received by one parent about 'standards' in the class. It also mentioned in reply to the concerned parents, that the teacher has arranged two ed psych consults for two children (so that's my son then, one of the trouble makers?!) and a third child is also being excluded and they are looking for a new school. Well that boy who is about to be expelled is the one who very frequently kicks my son (among others too), and kicked him so hard in the shins yesterday morning that he fell to the ground. My husband saw this and well, wanted to pound the kid, but we both understand that right now the system, and probably everything else is failing that boy and that is sad, although I'm sure things will improve slightly when he's gone.

That said, they just had 'anti-bullying' week, which is a load of bollocks (pardon my language..my husband has infected me with that word!!). Every morning when the kids form their lines to go into school, its the same thing, kicking, pinching, pushing (pulling hair) and no one (or no one who should) sees it. There's very little supervision during play time, other kids have told me this, and although they have 'befrienders' let's face it, it just happens, all the time. So stopping bullying, probably not possible. The school also doesn't want to admit that it has a problem, even with this boy they are planning to exclude, it has all been played down.

Funny, I had a dream last night about flying, just me flying around the earth and my son saying to me that all of this (meaning aspergers, adhd, etc) was like a round the world trip that you didn't want to take.. you didn't plan on it and now you are in so many different places just having to pick up what you need as you go along. But like most travellers, you find it gets easier as you go, and there are always people willing to help and offer advice, and before long you'll be carrying all the essentials you need, around with you in your bag. Hmm.

Ed Psych

Yesterday's meeting the educational psychologists went much better than expected. My son's teacher could not make it as she has been ill much of the week, but his teacher from last year (who is also asst. head) came in her place. I thought we were meeting with a group of people, but actually it was just two psychologists and the teacher so it was very informal. After a lenghty discussion and completion of an 80 question diagnostic it is the general consensus that my son has ADHD and should now obtain a referral to a specialist.

It was also suggested though that we go back to our GP and ask for a separate referral to a specialist for Tourette's syndrome. They did not think, for various reasons, that he has Asperger's, mainly because he is highly creative and also has a sense of humour (doesn't take everything literally as most asperger people do). Several other issues though stand out as Tourette's which is equally troubling to me, as it is not really well understood in general society.


So it all seems very roundabout, as we now have to wait for two separate referrals before actually seeing a specialist to find out what our options are. Also, any assistance in school will not come until a formal diagnosis is made, as I understand, which could take months. But as the teacher said, at least they have some understanding of what is going on and can better adjust thier teaching around him in that way. Although I don't know if that's going to make much difference in my son's eyes as I just learned that he is now sitting at a table by himself due to his constant motion and flailing arms etc. His teacher from last year said she noticed he seems to be a lot lonlier on the playground than last year, and we have noticed that he hasn't received any birthday party invites this year, as he did last year. This is very sad for me, and I can only imagine how misunderstood he must be feeling. In fact that was one of the questions on the diagnostic, 'has your child stopped being invited to friends houses/parties/play etc?'

NHS says No..

Yesterday my son wasn't too sure about eating his raisin bran. He said it smelled, well, like raisin bran. He had to examine the box and then after I poured the milk on, he decided it smelled ok to eat. I am starting to relax more around his sometimes quirky tendencies and sensitivities to things like smell, and this has made life more peaceful for all of us. Since we suspect he might have Aspergers and/or ADHD these sensitivities now have a context in which to make sense.

We have been waiting for a referral from the NHS (National Health Service) after our GP asked for it on our behalf, and a letter back came stating that we have to go through the school educational psychologist first before any referral to a specialist can be made. This despite the fact that the school suggested we see our doctor for a referral! But my son's teacher has been very helpful (I'm sure she's exasperated as well!) and has made an appointment for us to see said educational psychologist later this week. This is my first foray into specialist care in the UK, and I'm still navigating the school system!

The NHS so far has been a mixed bag for me, where I have had the blessing of two free births, and excellent midwifery care, but also seen one of my husband's friends die due to misdiagnosis of melanoma. My husband has also experienced the 'brush off' from his GP after complaints of aches and things that won't go away. Its the budgeting thing, the need to spend as little money as possible to keep the NHS going. This sometimes results in lack of proper care and attention, whereas in America, it can go the opposite route, you can spend unnecessary amounts of money to no real effect.