Syndromes, Spectrums and Symptoms
Blogging has been hard for a while, really hard. It seems so dishonest talking about a bit of sewing, a swap, minor domestic issues, when all the while there is an elephant in the room that I'm trying not to mention. Not letting its sweaty grey presence be felt.
It has sucked all the pleasure out of this little corner of my life and I want it back. And the only way I can think of doing it is by outing the elephant.
Being a parent is hard. It's certainly the hardest job I've ever done (and that's not even taking into account the lousy salary and bad perks) and I'm sure that would be the case whatever sort of children fate had dealt us. But we are being forced to confront the fact that parenting Mark may just be hard for reasons beyond his or our control.
When his teacher hit me out of the blue last month with a tirade ending in 'I think you need your Doctor or Health Visitor to take a look at him' my heart sank. I recognised her frustration and the behaviours she was describing (although I still feel furious about the unprofessional and insensitive way she raised them). And I felt the roller coaster ride beginning.
We've always known Mark was quirky, an individual, with his own way of viewing life and dealing with it, but now it seems that this is not acceptable. Not to school anyway. And so I find us in the pinball machine of referrals: special needs co-ordinators; community pediatricians; educational psychologists; doctors. Uncharted waters.
It's not that I don't see elements of Mark that could fit with a diagnosis of Aspergers or Sensory Processing Disorder, or a load of other syndromes that I am probably not aware of (yet). It's not that I haven't wondered if he is 'different' at the end of many a difficult day when my patience has been tested to the limit.
And it is not that I am reluctant to see him labelled either. You could label him purple for all I care, as long as it helps make his path through life a little less rocky. And that's what this boils down to. Is the amount of time and emotional energy we will have to invest in order to get to a diagnosis worthwhile?
He is my child - is an educational psychologist (however eminent) ever going to be able to tell me things about my beautiful boy that I don't already know? Would my time not be better spent just helping the person he is navigate life as it is?
But then what if there is some eating regime, some behavioural therapy, some special help that I can't give, and that I can't access without a tag to hang on him. I would kick myself. Perhaps I should have started this ball rolling myself? Perhaps in some way it is a relief that a professional has given me a push. So half-heartedly, I allow them to begin and wonder where this will all end.
See my elephant? Better get used to him - he may be around for some time.
It has sucked all the pleasure out of this little corner of my life and I want it back. And the only way I can think of doing it is by outing the elephant.
Being a parent is hard. It's certainly the hardest job I've ever done (and that's not even taking into account the lousy salary and bad perks) and I'm sure that would be the case whatever sort of children fate had dealt us. But we are being forced to confront the fact that parenting Mark may just be hard for reasons beyond his or our control.
When his teacher hit me out of the blue last month with a tirade ending in 'I think you need your Doctor or Health Visitor to take a look at him' my heart sank. I recognised her frustration and the behaviours she was describing (although I still feel furious about the unprofessional and insensitive way she raised them). And I felt the roller coaster ride beginning.
We've always known Mark was quirky, an individual, with his own way of viewing life and dealing with it, but now it seems that this is not acceptable. Not to school anyway. And so I find us in the pinball machine of referrals: special needs co-ordinators; community pediatricians; educational psychologists; doctors. Uncharted waters.
It's not that I don't see elements of Mark that could fit with a diagnosis of Aspergers or Sensory Processing Disorder, or a load of other syndromes that I am probably not aware of (yet). It's not that I haven't wondered if he is 'different' at the end of many a difficult day when my patience has been tested to the limit.
And it is not that I am reluctant to see him labelled either. You could label him purple for all I care, as long as it helps make his path through life a little less rocky. And that's what this boils down to. Is the amount of time and emotional energy we will have to invest in order to get to a diagnosis worthwhile?
He is my child - is an educational psychologist (however eminent) ever going to be able to tell me things about my beautiful boy that I don't already know? Would my time not be better spent just helping the person he is navigate life as it is?
But then what if there is some eating regime, some behavioural therapy, some special help that I can't give, and that I can't access without a tag to hang on him. I would kick myself. Perhaps I should have started this ball rolling myself? Perhaps in some way it is a relief that a professional has given me a push. So half-heartedly, I allow them to begin and wonder where this will all end.
See my elephant? Better get used to him - he may be around for some time.
Comments
Being a parent is very hard and the constant decisions you have to make for the good of your child can be overwhelming and so draining sometimes.
Zoe x
I have been going thorugh this now for almost two years in the school style, and before then unknowingly at the time for another 3 years or so.
I'm hoping to write a longer post on my blog about Edward, my little quirky boy, because I could probably write war and peace on here on the subject!!!
One thing you could do starting tomorrow is diet wise, does he have alot of dairy? If the answer is yes, get rid of it now, use rice or soya milk, Pure spread, the list goes on....
I know how much school can hurt, how much others parents stares and children laughing can burn into you, but if your little boy is happy, then that is the most important thing :)
Sending all the hugs I can squeeze out :) xx
I hope eventually you will be glad you did this. *hugs*
once he was diagnosed as having sensory integration disorder and being "borderline" autistic, it made dealing with him a lot better. and going to the occupational therapist a few time drastically changed the way *my* mind processed everything and made a vast improvement in our relationship.
there's a lot of things that you can do it help him that may sound daunting now, like changing his diet and doing some physical therapy, but as soon as you feel comfortable integrating new ideas into the schedule is surprisingly easy and make a huge improvement.
xxx
lyn
Remember that your son chose you as his parents for a reason (I firmly believe souls choose their families). And that's because you are the one who can help him best on his life's journey (and vice versa of course! He is here to teach you too!).
Sending you big hugs of love and support.
we all have elephants. there's one here at our house, too.
thinking of you.
Jo XXX
I think you should forget about the "labels" (your son will always be your wonderful son), try to think of going to specialists as something positive. In the long run it might help your son understand himself better. My brother got an ADHD diagnosis + medicin the day he turned 25 (he decided to see the doctor himself after 25 years of being different). My mum got her diagnosis at the age of 53. A big relief after years of struggling.
A big hug from me
Hopefully you will find someone (pediatrician, therapist, whatever) that will at least provide you with helpful direction if not necessarily answers. we still don't really have answers...Matthew isn't officially diagnosed as his doctor says he is "dancing around the symptoms of aspergers" and she also says his age (still so young) is a factor. But at least she has provided us with some direction with therapy and advice to deal with some of his quirks.
lots of xoxoxo's to you!! Amy
I'm sure the love you give your son is the important thing, not whether or not you have a label for other people to use
Diagnoses can be problematic and even controversial, but they are helpful when dealing with the system.
I still remember that toy you posted - the one you had made for him with all the latches on it? You clearly know your child best. I hope you are able to feel comfortable with how all this plays out. I was an occupational therapist in my pre-mommy life. I loved each of my students and all their uniqueness. God bless. And thanks for sharing your elephant with us.
You know, all the agonising you are doing over this just goes to show what a good mother you are.
Please keep your chin up, as I think you are going to be in for a pretty rough ride with tests (many of which will probably be inconclusive) and what not until you find ant type of answer.
Just remember, you wouldn't change him for the world!
here's a big hug and hopes that things start to get a lil bit easier for your family!
Anyway, you will know what is best to do because your his mum. Go with confidence with the advice and decisions you choose and you won't go wrong.
And like JO said we all have elephants....just promise to keep on making great stuff for us to see when you can.
It's true that no one outside of your loving household will love your boy as much as you. For that he is really really lucky, and that will certainly make his life easier and more fulfilling for all of you...
It's just wonderful that he is alive and well. XX
my son also has some problems with groups of children and he will never be a footballer either.
But I am hoping that with some physiotherapy and help from the scholl to make life easier for him too!
Hang on in there x