A little while ago, I alluded to the fact that one of our kids is going through some health issues. They aren't life threatening, but have awakened us to the idea that what we thought was 'weird' is in fact a real issue to be treated with care and thought.
We are still undergoing testing and assessment to work out exactly what it is, and thus how we will treat things, so for now I'm not going to give it a 'label'.
But I just wanted to talk about how things like this affect you.
How for years I've thought something wasn't quite right, but could never put my finger on what, and it was never 'bad enough' to do anything about.
And that over Xmas, the final straw in this camels back broke when no matter what techniques I tried as a parent, nothing worked and I really seriously thought I was going insane.
To have someone turn around and say to me that no I wasn't imagining it was such a life saver. Literally. I felt like suddenly I had a life raft to cling to in the stormy ocean that was my life. To realise that the mother instincts were once again right was amazing. To confirm that I know my child better than anyone else, reassuring.
But in saying how it was a life saver, doesn't change the day to day reality of how to live with this, what it means for us as parents and for his siblings. How do we treat them all the same, but with allowances? Is this how it works? And why am I after two weeks still so shell shocked and in turmoil.
In telling a few friends, we've had some interesting reactions. The typical "oh it's just boys" or "what tests have you had done" haven't been helpful. And the ones where you tell them and they don't even reply were probably the worst. But the question "What do you think? Do you feel this is right?" was the most helpful, supportive one I've had. Because yes, this 'diagnosis' feels right (no matter how much we don't want it to be). And really at the end of the day, whether it turns out this is a 'real' condition or something in that direction, it's something we are having to live with and deal with every single day and it's an acknowledgement that this is hard. That we're not bad parents.
Because this morning as I sit here typing, my stomach is a rolling ball of worms. Wriggling and jiggling so that I don't know whether I'm coming or going. I can't begin to tell you how this morning was in my house. It breaks my heart.
But the hugs once everything calmed down. They were healing. Huge hugs of comfort that we all needed. And the forgiveness that came with them also much needed.
You see I put my all on the line for my children (as most parents do). So when they are unsettled, unhappy & in crisis, I am too. (And if fact often worse as I put my own spin on things and yes, I'm trying really hard not to do this!!!).
And I'm left sitting here with a million and one things to do, not wanting to do one of them. Wondering if a day in bed wouldn't be easier? (of course it would!), but what would that achieve? And hey, I may be many things, but I'm not a quitter!
And so I carry on. I continue to eat the chocolate easter egg Andy gave me (No Trina that won't help either!). I have a shower and get dressed. I tidy the house. I put the washing on and hang it out. I go to the gym. I do those million things with a smile on my face because that's what I know to do.
**Edited to add an 'author note'. I try to keep my blog uplifting and happy. I don't always share the 'crap' that I go through because often it's over and done with and I've forgotten it long before my words on a screen are. But, I also like to keep my blog real. And this is my life. And it is real. I'm not looking for you to feel sorry for me, but perhaps to understand why I might be a little aloof or distant or any other number of things that happen when alot is on a persons mind. Thanks for your support and friendship.**
Peace amongst the madness
So been there, felt like that - still do! Label or not a bad day is still a bad day! I have always felt this about my gorgeous boy who was diagnosed with Aspberger/Austim at 4 although I "knew" a good 2 years before that happened. He is 14 now and sometimes I do wonder how I have coped and there have been additional stresses to, of course. All I can suggest, wherever this particular journey takes you, is for you and Andy to be kind to yourselves and always remember that whatever this issue turns out to be, it is NOT your fault!!! It was truly the kindest thing any specialist said to me. xoxo
Posted by: Esther | April 05, 2013 at 11:35 AM
We had a similar thing happen with Jack all started when he started school .I knew from the beginning something was not right and so did he .
All I can say Trina is take one day at a time .
Jack has been diagnosed as dyslexic ,dyspraxic and has a 7% processing ability is audibly challenged too.
He is acutely aware of how this effects him . It has affected his confidence and now at 14 with all the teenage stuff going on too is due to be re assessed.
We are not alone and within our scrappy community there are other mums that have issues with child Heath too .
We are all here to bounce off Trina in anyway we can..
I want the best for my boy and that means for me he has to be understood by his teachers and happy I all ready know Jack is a very clever I was going to say little but he stands at 6ft conundrum ..
Posted by: Jane Hambly | April 05, 2013 at 01:34 PM
Being understood and listened to by the teacher is a big thing. The teacher has to find "the way that particular child learns". As was motherhood - childhood is something everyone has to learn na matter what condition the child has - it is a lifetime of learning - even when playing, Making new friendships, understanding all the "little things that happen throughout the day" - it's all a learning phase that lasts us a lifetime. When the child is understood by the teacher, his/her friends/peers, parents, extended family etc - things are made so much easier. It doesnt take the issue away - but it makes it all more easier to get on with life no matter what the condition the child has. I have dealt with s few children - all with different issues - and you just have to find a way that they respond. It may be a bit harder trying to work this out as a parent - as sometimes the person on the outside of the circle can see these a lot easier. I don't know what or has has what etc, and it shouldnt matter. What does matter is the person inside. Love them no matter what. It makes you a better person. I was a secretary at Primary School and at times there were things that i noticed and mentioned to the parents - they were grateful for my comments. That helped so many of them. Just to make this clear - this DOES NOT make you less of a caring parent, it makes you THE PARENT, getting all the help, advice, ideas to do the right thing by your child. TRINA - you are amazing. You may have crap days, you are not alone. Breath and know we accept you AS YOU no matter what. If I have said something to offend anyone in this, sorry. But I want all mums and dads to know they are doing the best job they can. We are all here for each other. RANTING & RAVING can be great too. May not fix problem, but a bit of less hot air WILL HELP. and chocolate. & some scrappy time ha ha ha :)
Posted by: Julia Hewitt | April 05, 2013 at 04:30 PM
Love ya mate, and your posse ;)
Posted by: Vicky | April 05, 2013 at 05:49 PM
my eldest son was diagnosed with Aspergers at age 7 but we had been noticing "odd" behaviour for a long time before that. to have a diagnosis was good for us but he did not like having a label and so we carried on life as normal as we could but always being aware that we needed strategies in place to help him cope with day to day living. He is now coming up 25, living in another city - on his own, has had a girlfriend but not in a relationship at the moment but manages pretty well by himself. It has been an interesting and challenging journey for us and it will be for you too. Know that we are here for you and sending love and hugs your way.
Posted by: Denise Spicer-Boyes | April 05, 2013 at 05:51 PM
Trina, you are a wonderful parent and have made the right decisions. I have come across a number of parents over the years, in my role of Support teacher,who refused to accept that there was a problem and this is so difficult to accept as there is so much help available if parents and schools work together for the child.Every child is unique and special and if we accept them and love them just the way they are they will achieve and grow. My thoughts are with you as you come to terms with these changes to your life.xx
Posted by: Janet | April 05, 2013 at 06:10 PM
Wishing you and your family all the very best with this new journey/path Trina. You and Andy obviously love all three of your children unconditionally and will make the right choices together. hugs
Posted by: Raewyn | April 05, 2013 at 07:57 PM
yip gotta be real!!!!
thats life and what we all need to handle
so share away
glad the pressie brightened your day xxx
Posted by: mandyb | April 05, 2013 at 08:06 PM
I love how you keep your blog real Trina and one of the most important pieces of advice I would give to you that if the diagnosis is real make sure you push for help if you and your family need it . We have struggled for almost five years to get a diagnosis for my daughter and still are as the assessment people do not want to label her as they are concerned they will label her with the wrong diagnosis even though teachers, teacher aides and ourselves are convinced of the Aspergers label. It just Fits her social issues. Trina you know my email if you want somebody to talk to. Hugs!
Posted by: Beverley Cunningham | April 05, 2013 at 08:14 PM
Thanks for sharing this Trina. It was also interesting to read the comments too. I think as parents we need to be assertive and search for answers sometimes. If parents don't 'bat' for their own child, who else will. Yes I agree with an above comment, that sometimes parents don't want to know (perhaps due to anxiety) but knowledge is power. As a mum IKWYM about going through what your children go through. Having kids is like having your heart outside your body half the time- yet you try to keep it together for them. Take care, you will get to the bottom of it. xo
Posted by: Sally | April 06, 2013 at 09:02 AM
It is great to know that you feel comfortable sharing your life with us and not only the good stuff! It helps to lighten the load knowing that others care. Be strong for your child-you will cope with any changes that may come to your lives and you have us, your blog readers here for support. Take care of yourself ,as well.
Posted by: Judy | April 06, 2013 at 12:04 PM
Trina you are a good parent and the reason I know is that you care about your children enough to listen to that feeling, no matter how scary the result may be. The path is hard and the biggest obstacle is starting the journey, and have already done that. Know that you are not alone (I have three out of three, including a girl)and you are fabulous parents no matter what anyone else says. Don't be afraid to cry and keep your truly supportive friends and family close, you will need them and they will need you as your journey unfolds. Especially don't put any value into experts (and others) who claim that it is something you have done, where you live or some other way to lay blame on parents. Every man, woman and child has a purpose in this world, and a select few have gifts beyond most peoples comprehension - and those few need us as parents to help them find their gifts and talents. Take care and keep creating (it helps).
Posted by: Alicia Redshaw | April 06, 2013 at 12:35 PM
Dear Trina,
Sending you Andy and your family big hugs and I will keep you in my prayers. I hope that you find some more answers and life with your precious family continues to be special despite the hurdles.
Take care xox
Posted by: Teryl | April 06, 2013 at 05:04 PM
Trina my son was diagnosed at age 11 with adhd best thing ever his marks went up so high at school and after 3 years he was taken off all the drugs and is now a happy confident child almost 17 who copes well, life was hard but the pills just made his brain click
Posted by: janice | April 07, 2013 at 03:54 PM
My son was diagnosed with adhd around 7yrs of age. Being given a 'label' was the best thing for me because then we knew what we were dealing with and could do the relevant research and make decisions about treatment. An official diagnosis is also important as far as being able to be prescribed certain medications, receive a child disability allowance ($45/wk) or be eligible for special support at school. I have an older son who was assessed by an Ed Psychologist as having different issues again, and now he is able to use a computer for all written work at school and be given extra time during exams. So, it's definately worth the initial stress of going through tests and assessments to find out what your motherly instincts are already perhaps telling you! :)(I recommend getting involved in a support group too, if there's one in your area.)
Posted by: Kellie | April 07, 2013 at 04:22 PM
Trying to think of the right words to say here to express my thoughts. 'I understand' sounds a little dumb because of course I am not walking in your shoes. But I do hear your words, feel your pain, know what you are saying, feel the turmoil in your heart, and I understand this post. I wish I could help but some paths we just have to walk alone, that one I know. And now I go to do all the things I know. 'Fake it until you make it' Hxxx
Posted by: Topkatnz | April 08, 2013 at 08:47 AM
Sending you hugs and love across the ditch and hope you are surrounded by loving friends and family close by to help you through the tough times
xoxoxo
Bridget
Posted by: Bridget Larsen Australia | April 08, 2013 at 08:53 PM
In exactly the same place as you...
Posted by: Penny | April 09, 2013 at 12:04 PM
Finally catching up on some blogs after a busy weekend at S n P retreat. So sorry for the pain you are all feeling, keep strong and seek those answers. Dig, dig, dig your son deserves the best help you can give him. Kia Kaha
Posted by: Pauline Parker | April 11, 2013 at 11:12 PM