Saturday, March 10, 2007

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.

40 comments:

Zoe said...

Ali, I think you'll do the best for your kids no matter what it takes.

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

raspberry said...

Ali, you are not alone, and I know you already know that :)
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

Old School Acres said...

I feel the frustration and hurt in your words. You're in my thoughts, dear Ali. And Mark, too.

kirsty said...

Hopefully that elephant just shrank a little. All will be well, Ali. Don't fear diagnosis - it can be very useful. Name tags won't change your relationship with your beautiful son, but they may make it easier for other people to relate to him. Don't ask me why but some teachers in particular manage tricky behaviour better when they have a "Thing" to blame.
I hope eventually you will be glad you did this. *hugs*

capello said...

to me, the hardest part of dealing with griffin was realizing that he didn't fit into society's mold.

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.

Simmy said...

Ali, poor all of you. I do so sympathise with your dilemna ... whether to take it seriously or not. I guess the trouble is once you're down this track it's hard and long. Are you sure it's not just a case of trying to fit a square peg into a round hole - maybe the state system doesn't suit your son and that's all it is. The thing I like about our school is that they accept each child for what they are but I guess they can when there are only 15 in a class. I guess you need to follow your gut feelings. BTW there is a very good allergy pracitioner in Cirencester who Rohan went to see. He puts this clip on your finger and tests you for everything.....food, minerals, environmental stuff. My sister saw such a guy in NZ when her ex was convinced their youngest was ADHD and it really helped.

Kate said...

I am sorry about the insensitive teacher, I hope she is willing to work with you from now on.

nuttnbunny said...

Oh Honey! Vibing goodness to you, Mark and the whole lot. Will do my best to be a good blogger friend as you deal with this elephant.

lyn said...

I can't think of anything useful to say, so I'll just send you an internet hug - that's really meant.
xxx
lyn

Alicia A. said...

Good luck whatever path you take. He sounds like a *lucky* boy to me to have your love and support. And know we're all out here rooting for you- and Mark too. xo.

Angela said...

Oh sweet mama! You deserve a big hug because I'm sure you need one. I understand some of your feelings here and I hear your pain. I hope you find a path that works for both you and Mark. You know him best and love him most. Trust that you'll do the right thing. I'm thinking of you.

Flibbertygibbet said...

I'm not a mum so feel a little underqualified to comment - but even so, I do know from reading that you are a good mother to your lovely boys. I hope that you can get some useful answers to the questions that must be swirling around you at the moment x

kirsten said...

i know what you're feeling. off to email you...

Suse said...

Well done for outing the elephant and posting this.

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.

TinkerBlue said...

I'm not a mum, and cannot even pretend to imagine what life is like for yourself or Mark. But hugs and best wishes. Thinking of you.

babybug said...

ali, a big hug...
we all have elephants. there's one here at our house, too.
thinking of you.

Violet & Rose said...

Well, there are teachers, and there are teachers. Some are nurturing, supportive, understanding, and then it seems there are some like your son's. All children are different. Yes, sometimes there are "labels" and often they help, but when "labels" are thrown around, they are limiting and constraining. Sounds to me though like your son could do no better than to have a wonderful mother like you Ali. Take care.

Eren said...

Oh Ali, your post today breaks my heart. It makes me so sad because you are doubting your confidence as an incredibly capable and loving mama. Hang in there. A friend once told me that we get the kiddos we get because we are the mamas that they need. Have confidence in that you are the mama that he needs/needed/will always need. You are perfect for him. Feel free to post away on your elephant. I for one will read and listen. Blessings to you today friend.

Amy said...

Glad you decided to let you elephant out of the bag. I'm sorry for the harsh words of a frustrated teacher but I hope they lead to the easier path through life that you've imagined for your kiddo.

Angel Jem said...

Get that elephant out there, girl, and let's all help you clean it up (or is that clean up after it? Shovels out, girls!) My DP has a... well... he's sort of... well... different. I can't label it in front of the husband because he hates labels, but David has dyspraxia. What used to be clumsy child syndrome. He's awkward, un coordinated, his work is messy he is not organised, making friends is difficult and he breaks my heart sometimes because at 9 he has no intention of ever growing up into a fully- functioning adult if he can help it. but he is my DP and I love him. And, yes, it took the teacher asking me some questions to make me pursue the fact further (a little more delicately than yours, by the sound of it) Now DP has had some physiotherapy, has a list of things he and I need to look out for and remeber and a friend who knows that DP is never going to play football, but is cracking at make-believe. This friend keeps DP with the other boys and, yes, we are feeling better. My elephant is sky blue with a pink table cloth on. You can still tell it's there, but at least from a distance it looks a better colour. Do what you need to for your child and get what you can done for him. You need to choose your paint colour and face that elephant. And, like good bloggers should, we'll be right here waiting for you. Wish you the best,
Jo XXX

syko said...

Ali, I'm so sorry about the teachers poor way of expressing her worries to you!!

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

julie said...

Oh Ali, I am so sorry to read your post. I know from bitter experience the absolute panic of coming to terms with the fact that your child might have need of a ‘diagnosis’. It’s a bottom-has-just-dropped-out-of-my-world kind of feeling and it is not something you would wish on anyone. The only thing that I would say about pursuing a label for Mark is that in some ways it might make life easier for him. A label won’t change how anyone who knows and loves Mark feels about him but it might encourage others to be more accepting, tolerant and understanding. You are absolutely right that you know him best. I wish I’d had your attitude at the beginning of our journey - you hold tightly onto that in the coming months and it will be your talisman against the white noise that comes from information overload, well-meant advice, misunderstanding and conflicting ‘professional’ intervention. Well done for outing the elephant - I hope it starts to shrink and fade into a little grey mouse that can be swiftly dealt with. Needless to say, you have a lot of people out here who are wishing you well. Take care x

caroline said...

I know that there are far more qualified blog friends who can offer useful words of advice and pearls of wisdom. But my thoughts are with you and your family at this challenging and worrying time and I know that you will do the very right thing for Mark because you already do.

Crabby Amy said...

Oh Ali, your post made me cry as I know all too well the feelings you expressed!! I'm so sorry about the insensitivity you've experienced with school....I know it's hard! :) Matthew's "Aspergers" is always in the back of my mind for anythings that goes on...school or otherwise socially. We have days that I feel like we are floundering and other days that produce great joy. As a parent you do the best you can and give your child lots of love, which you are obviously an expert at!!

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

Karen said...

Ali, I feel for you. You might want to have a look at www.mindroom.org when you have a minute. It's a charity which helps families and children with all learning difficulties, including Asperger's, etc. (I'm involved with it, and the founder is a pretty impressive person who set it up because of her own family experiences). If you have any specific questions, let me know and I might be able to help or put you on to someone who can.

monica said...

Hi, just wrote you an email... too many things to say!

Gina said...

I think schools are pretty lame when it come to anyone that is not the perfect child that fits the needs of a teachers way of teaching. And in my opinion there are very few children that fit that description out there, expecially boys that need to be more physical than sitting quietly behind a desk for 6 hours. I think when you find others that share the same issues, a support group that can help and encourage you as well as be a shoulder when you need, really helps.

Melissa said...

My thoughts are with you, Ali! Have faith that you know what is best for your boy, and don't hesitate to seek a second (or third!) opinion. Finding the right help is half the battle.

feather nester said...

I'm so sorry you have to deal with such a hard problem with no clear answer. Not being a mother, I'd feel disingenuous trying to offer too much guidance there. But I am a speech-language pathologist and have some training in autism spectrum disorders. I'm not sure how your med system works in England, but please contact me if I can offer any assistance/advice/support/clarification as you muddle through. Whatever you do will be the right thing.

Jo said...

I think we all show the bits we want to on our blogs, and we all have an elephant of some kind in the corner of the room.
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

Strikkelise said...

Ali, I just want to say that you sound like such a loving and gifted mother and that Mark is so lucky to have you. And you are so lucky to have him!
Diagnoses can be problematic and even controversial, but they are helpful when dealing with the system.

lindiepindie said...

Even in your frustration, your love really shows through. It sounds like you have a good attitude about everything - the labelling, accepting help, but wanting what's best for him. One of my kiddos shows some sensory issues. I'm NOT suggesting you homeschool or anything, but it's nice for me knowing that he is here with me learning in his own way and not having to fit in.

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.

Allison said...

Hi there,
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!

nuttnbunny said...

just checking in to make sure you're ok...

elizabeth said...

i'm so sorry that you have such a large elephant that you have to deal with right now. and you're right, parenting is the HARDEST job ever!!!!!! i come to work for a vacation.

here's a big hug and hopes that things start to get a lil bit easier for your family!

Dee said...

All my prayers are with you. My little brother had a lot of developmental problems growing up. Lots of heartache and difficulties, but, right now as we speak, he is studying to be a chef at the top U.S. culinary school, with flying colors in New York. It was a rocky road but I beam with pride when I think about all he's overcome. Sending big hugs to you from across the globe...

tiel s-k said...

hey, can you scoop up some elephant poo and send it to that teacher! Does she have children?????!!!!

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.

bigbucketgirl said...

hiya! just wanted to let you know that we have a herd of elephants here(what with our 3!!!). I'm all for graffiti-ing them! Making them a quilt would take too long, but spray paint? or merely throwing cans of the kids favourite colours over it! What would Marks choice be!?

Lisa said...

You've made the grey thing in the room is much smaller now.

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

Samantha said...

Ali,
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