auditory processing disorder

Mind Soul Body

2012-02-05T19:42:00.000-08:00

I didn't realise how much time i have devoted to Holly until just recently, she is constantly in my thoughts, my fears my every day actions - i worry, dwell and focus so much on her and her learning disorder APD that i seem to have forgotten about Me.

I feel I've forgotten how to be happy, if someone did a portrait of me there would be a permanent frown on my face, and if i can now see this, imagine how our children feel, seeing the constant worry on mum and dads faces.
and I'm not alone, seems to be a common occurrence by the mums who's child has this or any disorder.

I read daily on the APD group how stressed and worried parents/ family are.

I have one question for you - "what did you do for yourself today"?

if its hard to think of an answer then perhaps its time for a change.
Our children are important, finding the answers and what does and doesn't work for them is a top priority, but helping and healing ourselves also has to be at the top of the list

you can find help on Auditory Processing Disorder Australia/New Zealand and also Mind Soul Body - both on face book
little things can make the difference, coffee with friends, going for a walk, bubble baths what ever it is, please make sure you do something for your self everyday...

our children need us to be happy, so we can be at our best to help them.

every child is a priority

2012-01-25T18:49:00.000-08:00

as every one on the Australian/New Zealand APD group could tell you, gaining services at school for your child can be a hard and sometimes an impossible obstacle course.

Our children are often not seen as a priority
(as i learnt only to well this week at school for my daughter Holly)
because their disability is invisible.

If she were wearing a hearing aid, or in a wheel chair then the help would (you would think) come thick and fast and be automatic. (I certainly wouldn't want anyone in those circumstances to not get the help they deserve and need)

but what about our kids...? I'm so tired of hearing "there are many worse off than your child" or "APD isn't that bad" or worse still "what is it"

this week was an eye opener for me in many ways,
firstly how the "mumma bear" comes out in me when my child is wronged
(i mean seriously I'm a Leo with red hair - there is bound to be temper attached)

but i also learnt how people with APD and other invisible disability's get pushed to the side line, how they are not necessarily a priority at school.
(since when does a child who cannot learn in the same way as others, who needs constant revision, guidance, assistance and a much slower pace not make a priority list?)
does this mean their needs are not as important, does it mean they don't deserve all the same services and help as someone with visible problems???

in my opinion, our children and we have to fight all the harder - just to be able to move forward.
and to be honest, i don't care for schools/teachers or anybody else pushing the words
" there are plenty more worse off than your child" I'm sure there are!, but my priority, my concern and my desperation for help - is with my child.

there is also the battle with services for our children - should they improve (what is that about, its not like the APD has been fixed, it means what you are doing is working keep it going!!!).

If they make a few steps forward, if they can read and write and remember a little better at this time then we risk the services being pulled. The Government also decides, because our children can shower alone or sleep through the night that our need for help and assistance is not considered a priority -
we don't tick their boxes.

so tell me - what happened to every child is important, every child has the right to quality education, every family has the right to access the services needed for that child's future,

every child is a priority....

you are my I love you

2012-01-06T14:42:00.000-08:00

just wanted to share with you what happened here this morning,

Holly is part of a little face book support group (its very small and has lovely kids in who are around the same age with APD) it doesn't get used too often by the girls (as they are a bit young to want to be on fb too much) but in time I'm sure the group will be a huge support to the kids.

anyway, i asked her if she wanted to pop something on it this morning and logged her on and set it up and said "you can write - hope everyone has a good year at school" or something like that.

I then went off to do the washing, cleaning ext
when i came back in, Holly was crying (this is the conversation)

mum - whats wrong, why are you crying
Holly - i cant spell year
mum - that's nothing to cry about, the girls on this group don't care about the spelling
Holly - I'm just frustrated.

well, that blew me away, firstly i didn't even know she knew the word frustrated or what it meant, let alone to use it in explaining her feelings to me (and for that alone I'm very proud of her)

yet i cant help but worry, seeing the frustration over one word, i cant imagine how it must be for her in class, every time the teacher says "pick up your pens and write" must bring on those feelings for her. (The closest i can come to imagining what it must be like is when for eg you hear a song but cant remember the name of it, and it gets frustrating because its on the tip of your tongue)

anyway, just thought id share this with you all today but also with Holly, as i hope one day when she is older she can read these blogs and see that every milestone, every step, every hurdle - i was right there with her. I found this little poem/story today and fell in love with it, so sharing it too (seems appropriate)

You are my I love you {FULL VERSION}
Author: Maryann K Cusimano

I am your parent you are my child
I am your quiet place, you are my wild
I am your calm face, you are my giggle
I am your wait, you are my wiggle
I am your audience, you are my clown
... I am your London Bridge, you are my falling down
I am your Carrot Sticks, you are my licorice
I am your dandelion, you are my first wish
I am your water wings, you are my deep
I am your open arms, you are my running leap
I am your way home, you are my new path
I am your dry towel, you are my wet bath
I am your dinner you are my chocolate cake
I am your bedtime, you are my wide awake
I am your finish line, you are my race
I am your praying hands, you are my saving grace
I am your favourite book, you are my new lines
I am your nightlight, you are my sunshine
I am your lullaby, you are my peek-a-boo
I am your kiss goodnight, you are my I love you. ♥

new years resolution

2011-12-19T01:17:00.000-08:00

I often wondered if my worrywart attitude had rubbed off on Holly, she worries about everything,
going to parties, routine, how to do something, even planning an event like Christmas day sends her into constant spin (almost panic mode)

I always assumed she had inherited it from me, as i too tend to stew or stress on things, but recently I've been learning from members on the APD group that this is part of the disorder, along with asking many many questions, doesn't matter if its about a TV show we are watching or who is coming over or if we are planning something.

At the moment, she has herself in spin over how and when we can get the table set for Xmas eve lunch, it is bothering her and will continue to bother her until its done, and my attempts to tell her it will be fine, we have plenty of time seem to have no effect at relieving her panic.

Yesterday she was invited to the movies and McDonald's, the worry that came with that was driving us crazy. to the point of nearly ringing and saying she cant make it, but i stood my ground, she went and she had a great time.

Its hard to comprehend what this means or how it really effects her, but I'm trying, I'm human and at times i do want to tell her to stop and just deal with it, or get over it
but now, after talking and learning from others on the APD group, i hope ill be more patient, more understanding and adopt some of the ideas given to me by members

including some sort of time line calendar and a white board calendar which i think will help enormously, as with holly, if i say its next week, well unfortunately that means little to her
as she still gets her days, weeks, years, yesterdays, today's and tomorrows confused,

so as soon as the new year is here, my resolution for her is to help in anyway i can to cope with the worry and stress that for someone who is only 10, shouldn't have to carry on her little shoulders,
if i can carry some of the load and more importantly teach her how to carry the load differently
then ill be a very happy mum indeed...

this time last year

2011-10-16T20:41:00.000-07:00

just a short follow up blog, on my previous ones.
its about how far we have come (and i know so far still to go) but sometimes it helps to look back and see the progress we have made.

This time last year, I was in tears, pulling my hair out, convinced something wasn't right, but no real idea of what.... holly couldn't read much at all, she couldn't do any maths, she could barely put pen to paper but to everyone else she was a typical girl, just needs to try harder.

It seemed the only other people who could see what I saw, was her teacher at the time and the learning support teacher who did one evaluation on her.... but still no idea's, no real advice - just that feeling that we were completely alone in the world
(because no one else could possibly understand or be going through this) ???

what a difference a year makes,

it was October last year our tutor started with us, and bless her, it was only meant to be 7 weeks of tutoring (yep - term 4 only was all that she was signing on for) and she is still with us today one year later.

We have a name, Auditory Processing Disorder, a year ago, I had no idea what that was and what that meant.

We found it on face book (who'd of thought lol) and I joined as many of the groups as I could.

I found friends, but not your ordinary type of friends, but the ones who understand, who know, who have been there, all ages, all backgrounds, all circumstances and none of that matters - its the common bond of those 3 letters APD that have brought us together.

Holly can write a sentence (not to age level but it is a sentence) she can do simple plus and take aways, she can count in 2's and 5's. she can recognise a little money, tell a little time, she knows her address, the months of the year and so much more, baby steps, but in the right direction.

a year ago, we were sooooooo lost - and even though the future is scary and an uphill climb,
she has a home, she has family who now know and understand what is wrong and friends (all be it a fair distance away) but friends who will understand her, when those at school may not.

this time last year we were looking for a fix, a - she will snap out of it, a person who could come in and stop the door from spinning and help her find her way out.

who'd of thought that person would be me,

and to all the mums on the APD groups, all the dads who read our posts quietly, all the teens who help us and the grandparents who have joined in and given us all a pat on the back, we are doing a great job.

think back to before the diagnoses, before you found groups, before you heard of APD and see how far you have come..... well done us and well done to our beautiful children xxxxxxxxx

Melt Downs

2011-09-03T14:39:00.000-07:00

As many parents with APD children know, they are prone to melt downs, and Holly is not exception.She can be happy go lucky one minute then extremely frustrated the next.

Ive often tried to put myself in her shoes, not being able to comprehend, or understand what has been said to her, unable to keep up with peers in and out of the class room,
and the big thing - not remembering what she was taught yesterday.

How could i possibly understand all that - no wonder she has melt downs.

I cant fix her APD, but i can learn about it, I cant fix her memory but i can work with her to try and re-cap some of what she has lost. I cant fix this, but i have so many new friends to talk things over and help me help her, thanks to the wonderful facebook support groups.

i cant fix the mean kids at school who call her dumb, but i can instill a sense of pride and belief in herself that will help to wash off some of the comments she receives.
(every morning as we pull into the school gate i remind her that she is smart, that she is a nice girl, that she is a lovely person)

I cant fix her APD but i can work on my reaction to it (i know im human, but reality is she has so few on her team, that when i cant understand her - that must make her feel like she has no one on her side)

sometimes taking a break, walking away or saying ill look at it again tomorrow is the only answer and this is in relation to homework in particular, our children overload so quickly that to pile this on them at home is unfair and unrealistic.

quiet places that the children feel peace are also a good idea, bedrooms, gardens ext, somewhere they can go or something they can do to relieve some of the stress. Holly likes to watch movies, it calms her down and in my book "what ever works" reward systems also can help with homework and meltdowns.

but reality is, our children will overload, stress, be anxious and angry -
and who can blame them.

Melt downs are a part of APD we can only ride the wave with our children
and hope we both make it to shore with minimal damage.

finding friends

2011-08-06T16:43:00.000-07:00

this is a subject for not only children with APD but adults too, at the best of times, in the best of circumstances its hard to find a special friend.

kindred spirit (as Anne in green gables would say lol)
but when you have difficulty understanding what is being said around you, when you cant comprehend every word, when you feel insecure and embarrassed about yourself,
the art of finding that special friend can be the hardest thing in the world.
children in particular can be very mean, they tease and bully and all i want to do as a parent is wrap my child up in bubble wrap and protect her as much as i can, but at the same time teach her to advocate and help herself in certain situations.

how do we find the balance? well that i can not answer with much certainly, i muddle along the same as any parent. I do lie awake at night knowing that she faces bullies and mean kids every day, I wonder what kind of friendships she will make in high school, and out of school for that matter. In fact i spend a great deal of my time worrying about her (and dyeing the grey hairs that come with that worry).

Holly has taught me few lessons - she can adapt (yes she plays with the younger children, she feels more comfortable with them, they accept her more) she can role play (become any animal, character, person required of her for a particular situation) she has humor (just a natural funny disposition, even if she cant tell a joke just yet) she has empathy (i went to a class open day, and she was sitting with her arm around a girl who was upset that her mum couldn't come to the day, and i will mention that this girl is one of the class bully's)

back up plan
sometimes as a parent you have to step in and try and help your child at least find that one kindred spirit and with modern technology that is easier than ever. Sadie also has APD and her mum and I have arranged for the girls to be pen pals (and this has given me a dear friend too)
But be careful, as with on line comes the dangers (watch over your children) but also you cannot force a friendship with someone who wont be compatible with your child. Holly and Sadie are so much alike in so many ways that it is working for them, but will they ever meet? will they ever be able to be best friends living in different countries? We may never know, but at least they are just a push of a few buttons away from talking to each other, writing to each other. No judging, no embarrassment over miss spelt words, no teasing.

don't forget your self
its easy to get caught up in never ending circle of our children, their triumphs and despair, and friendships play a big part in that. what about you? its hard to find someone who understands what you are going through, family & friends try - but its hard.
I can honestly say through the face book groups on APD I have met some truly kindred spirits of my own, I may not be able to visit them, or stop for a coffee, but they are there with answers, a kind word, a ♥ on a page.
trust me it can make all the difference on days when you are lost, unsure and worried.
we have each other, and our children have us - we are on the right path

Murky Waters

2011-07-29T14:39:00.000-07:00

this blog is about the school system, and as before, it will never be my intention to name or shame any school or person, and this particular blog is about the system in general, a problem that is universal to all parents who are trying to row the boat in the murky waters, for their children who learn differently.

We all would do anything for our children, but unless you have the ability to understand the school system, the government standards and the "stuff" that is written on the reports you gather for your children, then like us, you can become very lost. This isn't about a single school, nor about teachers at all, its about trying to find the best environment for our children, a place where they are able to work at their own pace, work at their own level, made to feel they belong. Parents search far and wide for a school that will "best fit" their child's needs, private and public, many choose to home school because they cant find what they need.

The book "like sound through water" mentions the water being different colours as the mum tries to deal with some of these same issues, and I often wondered what colour our water would be,
Finding out why Holly has problems remembering and why she cant follow instructions certainly made the water a little clearer, we had a name (a label if you like) but at least we had a direction. (as apposed to spinning around in circles as we were prior to the diagnoses)

However, in finding the "best fit" for our daughter's future (and i am looking down the track in 4 years time) - our water is brown, and we cannot see beneath, nor do we see land or a light house.
Right now, at this moment, we are floating endlessly in the brown ocean, the government sets guidelines, and i understand the need to do so, however, learning disabilities don't necessarily tick the right boxes.

where does this leave us? with learning support, atm, only available for 4 subjects - the rest, well she and others like her will be on their own so to speak.
where does this leave the schools? who for the most part want to help, but have to do so - with one hand tied behind their back, they have to follow the guidelines set by the governments - they also have a budget to consider, but as a mum all i want is a school that "fits" my daughters needs.

so, we are still in our boat - floating, in the murky water - looking for the glimmer of light that will only come with the widening of the criteria guidelines so all children can reach their full potential.

Before,During and After (the diagnoses)

2011-07-16T04:02:00.000-07:00

BEFORE
"Holly's tears won't work with me" those words rang in my ears as I made my way back to the car after a parent/teacher interview. Holly was falling way behind, she couldn't write a story at the same level the other children were able too, she couldn't count to 20. "If Holly could sit all day and talk to her friend or stare out the window she would, I have to use my dragon voice with her"
I cried in the car and all the way home. Why couldn't she do the work? - something inside was nagging at me, but i didn't know what and i didn't know what it was trying to tell me, only that something was wrong. If only the teacher knew how damaging to a child with APD her dragon voice could be, and how real the tears are. But in the teachers defence, I'm sure she won't be the last teacher Holly and I encounter who has not had experience with this learning disorder.
lucky for us a new school was being built nearby, new class rooms, smaller school, air conditioning (a big bonus here in Australia) maybe that's all she needs, a change, a fresh start. that could do the trick.

"We have some issues here" the first words said to me by the new teacher at the new school - when I went for the parent/teacher interview, but instead of being mean, he was concerned, instead of blaming Holly and saying she needs to try harder, he said, we will go back to basics and see what clicks and what doesn't.
Finally someone could see what I could see, how could possibly the quietest, most shy child in the class be getting D's for effort, she behaves, she appears to be trying hard, it just didn't add up. Now some one else could see it too, although having said that, i don't think he knew what the problem was either.
You would think we are now on the right path to solving the mystery, however it would take another 6 months for us to get the answers we needed. While waiting, Holly plodded along slowly, the pressure was taken off her as far as school work goes, the teacher let her go at her own pace, but she was falling well behind the other students, and only seemed to make friends with the younger kids (it was a composite class of grades 2 and 3).
Waiting in Que in a public school for your child to be seen takes so long (I often said if Holly disrupted the class, by throwing a chair or two she may jump the Que, but alas, she sits quietly, annoys no-one and stayed at the bottom of the line) my personal thought is the government does not supply the schools enough learning support teachers and guidance officers to meet the demand - the staff they do have, get stretched to the limits, and children end up paying the price.
DURING
While we did have one report from the school about Holly it didn't give a diagnoses, but a list of her strengths and weaknesses, and I was so sure from reading this report that she was dyslexic. Even though as i said before, the tutor did mention APD to me.
So after waiting and not receiving the answers from the school system, we went privately. That's where the dyslexia testing came in and that's where we were then put on to APD, we then had the audiology report, then an assessment from the school, some were very long tests, and Holly remained (I thought) her usual happy go lucky self.
But ill never forget walking into her room one day (when all this testing was happening one after the other) and on her white board was a sad face and the word dum (dumb) written next to it.
this is how she felt, this is how she had interpreted the reasons for all the testing and reports.
Her self esteem was taking a battering and from now on we had to tread carefully.
AFTER
Today she gets modified work in class, she (for the moment) gets extra help with reading and maths. School systems change and grow all the time, but alas, they are also subject to budgeting issues and until APD is recognised as an official learning disorder, we will always have an up hill climb.
Our wonderful tutor who has been with us from the start is still with us, each week going over and over all that Holly may have forgotten from the week before.

If there is one piece of advice I can give with this blog it would be - talk to your child, explain what is happening and why, particularly during the testings and diagnoses of this or any learning disorder because that sad face Holly drew on her board will stay with me forever.

2011-04-16T23:14:00.000-07:00

You know as a parent when something just isn’t quite right.

This is our journey for our 10 year old daughter:

Holly’s story

Holly is our bonus baby; we have two adult children as well. Holly experienced several ear infections for approx.2 years- on and off when she was younger, up until then she reached all the mile stones that you look out for in your children.

By her prep years her ability to keep up with peers first started to show signs of weakness, firstly her muscle tone was greatly reduced (her ability to climb, role, run ext.) We made the decision to re-do the prep year (yes she would be a year older than the other kids, but she will be able to use that time to catch up physically, was our thoughts behind that idea, and the school agreed with us)

In grade 1 Holly was placed in the special reading group, by grade 2, the signs that something was wrong – to my husband and I at least were becoming stronger, having said that, some of the things that were happening – now make perfect sense, but at the time we had no idea they meant anything.

With school, she would do anything to avoid writing and reading. It was hard for her (and still is) to write more than a 3 or 4 word sentences, we would spend days learning spelling words with her and by the Friday, she would have forgotten them all and maths was just not happening for her in any way, shape or form.

The two schools we attended also knew something was wrong, the first being of little help, in fact it made her confidence in herself worse, so we moved her to another school, that has been a lot better (however as with all schools, I’m assuming, slow to act and you end up on waiting lists for ever and a day)

But the other signs, all though we noticed them, we didn’t think too much about them and certainly didn’t connect them with the problems she was having at school. Holly could watch a movie and tell you almost word for word what it was about, but if you give her 3 or 4 things to do at once (e.g., pick up your shoes, clean your desk and empty your rubbish bin) then she would stand in the middle of her room with no idea of what to do.

Holly’s memory is very much effected by her APD, and again we didn’t know this meant anything at the time, but as an example, she saw a dog and wanted to know what sort of dog it was, we told her it was a Rottweiler, about 20 times that day – she came back and asked “what type of dog is it again” and I remember we laughed at this, thinking she was having a blonde day.

By the end of grade 2 we knew that this was more than being a lazy child and we assumed it was dyslexia, as she was (and still is) reversing her numbers and letters - 12 is 21 and b is d. we organised a home tutor for Holly, who within one month of working with Holly, mentioned APD to me. I dismissed this (as I hadn’t heard of this before) and took her for dyslexia testing. Only to be told by them, it is APD, so that started our journey of testings, learning about this disorder and searching the web for answers.

While schools are not perfect, I’ve come to know what I need to ask, and what she needs, to get her the best results.

Our focus is on life skills, reading, money, telling the time (writing may never come to her as well as it should, but then we explore other options to compensate) Holly presents with a border line low IQ and is currently two years below her peers in class work.

We also try to focus on self-esteem, as at 10, the bullying isn’t too bad but I’m sure it will get worse, so we are putting in the ground work now to improve her mind set about who she is – and that is a very talented, beautiful girl who has a lot to offer this world. I feel we are all on this journey with Holly, learning more each day about what works for her and what doesn’t. We see the light bulb go on when she learns something new and is able to retain that skill.

All we hope is that she grows into a loving caring human being who has empathy and respect for others and in turn makes some lifelong friends and skills that will make her life fulfilling and happy.

I want her to believe that deep down in her heart, she is destined to do great things.

Nancy Outten