Touching base..slackness has already started on my blog!!:(

The high's and low's of our last week..One of those week's when you see more low's and when a postive comes along,you really do reach out and grab it:) The saying when you are taking 2 steps forwards and 5 steps backwards does happen alot.A harder week than normal but we are now in term 4,so i do have to watch out for signs of Tyler tiring out and at this point it always happens.To start of the week,i recieved Tyler's report from Autism QLD,so it started with a self pity day.It wasnt one of those days where you question everything.Reports always show you just how it is,its black and white and right infront of you.How much harder Tyler's world is,how we have all these strategies in place,teaching him life skills for now and later in life.Goal's for a child like Tyler is somewhat different.To know what a child with Aspergers goes through on a daily basis.Gives me a headache some days just thinking about it.I think sometimes my own thoughts go into over drive.On the positive side of things,he is doing exceptionally well and i am very very proud of him.

We experienced a situation this week with a meltdown at swimming.As most do know with As,meltdowns do frequently happen.Tyler keeps it together at school and after school he gets stressed and quickly esculates.This week has been worse,thinking back there have been some changes to hes routine.Dad changing shifts,teacher aide has been away on excursions,relief teachers,swimming days and times changed,pyscologist times have changed and so on.We have been trying to calm him very quickly,once he gets stressed he goes down hill fast(family and friends dont see this,as with aspergers they do this where they feel most comfortable and around there family..at home)I should of made the decision of either keeping Tyler home from swimming or let him just have a short session of playing at the pool instead of a lesson..A hard decision to make as stress does play a big part of Tyler's life.(Plus i need to learn to be more assertive too)

When we got to the swimming lesson,there were 2 other men in the hydro pool for around 5 mins so that could been enough to put Tyler off.He's lessons are late now,so hes probably tired too and only listens for so long before he goes into hes own world.After he was thrown up into the air(one of hes fears)and told he'll be thrown into the big pool and noone will save him,he reacted.During a meltdown he uses aggression as thats the only way he knows how to deal with stress.He was kicking and hitting hes instructor,he only does this to me.My fault as i should of ended the lesson right then and there or made sure he was given a break.After speaking to the pyscologist,i took him to the pool on the weekend so he knows the pool is a place where he has fun.I think he's at the point where he know feels unsafe with hes instructor.It'll be using a different direction with Tyler,not using hes fears.Using hes interests more.Otherwise they'll be seeing alot more meltdowns,during a meltdown he's to have a break or to finish the lesson.Also less eye contact,fewer words and minimal contact.

Bascially everything in Tyler's day is a stress and builds up over the day.Tyler isnt aware of when he's stressed and how to destress,Ive just finished reading Autism QLD' stress management..a must read for ASD parents.

Our postives of the week-:) One afternooon we were doing Tyler's homework and i recieved a phone call and told Tyler to continue hes homework while i was on the phone.I was surprised that he had finished it.Usually he needs my guidance but apparantly he does this at school too once they get him started:) Tyler's laughs i love,as he laughs with a snort through hes nose sooo cute!Tyler had even noticed that Kayden's feelings were hurt this week.Even though at 5am you really dont want to be woken by dinosaur/tiger roars.But it is a part of what makes Tyler...Tyler:) So funny when you tell Tyler "I love you" he associates it with a big smooch.But if he says i love you first and you say it back he'll ask why do you say it back to me for.

IEP Wednesday!!!:)

September/October 2011 Update=]

Tyler has recently finished Soccer for the year,he's first year and he's come along way and a lot of people have noticed and made comments,parents at soccer are just lovely,they notice Tyler is a little different and have more patience with him and go out of there way.(Its good for him to make friends that don't go to he's school).Were looking at sending Tyler to karate next year,the extra discipline and extra movements is what he needs and has been suggested by hes swimming instructor.Swimming he is doing well and it really showed last term during he's school's swimming lessons.Can tell he definitely does swimming lessons.

Term 3~We have been working with Tyler's psychologist,these therapists are a godsent.. Term 2(next year),when we don't have any:( Might have mention before the service Tyler uses is free and is a short term basis,we have been lucky to use them for 4 years by the time hes finished.End of term 1,2012 it ends for us,but are always welcome for any external programs or I'm able to ask for advice or help.We'll be led in the right direction.There isn't a lot of help available to kids on the spectrum from ages 7-11.The awareness isn't readily available.Due to our high numbers of ASD.Apparently there is a place here which I can do the referral myself when Tyler is 11/12 years which he can obtain any therapists he needs its just the in between stage.But that's our system:( Its where I will be taking over and doing my own work and research.

We have reached Tyler's biggest challenges/goals...sleeping, we have bought him a digital clock so he can visualize the time,as ive told him hes not allowed down in our bed till 630am.Eating vegetables,weve gone from hardly eating anything and no vegetables and also been told its sensory/behavioural,know he eats 2 types of vegetables and will try new vegetables and attempted what I have cooked for dinner.Weve been working on a lot of social stories,which Tyler is very visual.Tyler has also been doing the social skills group with 3/4 other boys of around Tyler's age and with diagnosis of either aspergers/autism of high functioning.Theses boys are too much alike.We all thought it would be good for Tyler,you know being around others like himself.But until hes aware of hes diagnosis we don't think it would work till then.Tyler's first problem is afternoons are not good for Tyler,if this group was ran in the morning Tyler would work much better.Tyler esculates in the afternoon,anxiety gets high.Hes kept it together for as long as he can manage during the day at school.Weve seen Tyler just not coping,tiring out fast.Which he needed down time again.Plus he is learning/developing more/new skills,how to annoy someone else and get a reward from it,but hes after a reaction from these boys but there not reading hes facial expressions/reading cues so don't know that Tyler is playing little pranks/jokes on them.He'll do stuff and slowly have a smurk on hes face,so you automatically think what is he up to know lol,you can get Tyler to change the topic when talking about hes interests,which he is showing a photographic memory,hes argues and is always right.He has been taken out of the room a couple of times from the other boys,hes told them at school I kick my friends and there still my friends(off course joking)but they don't know that and say well that's not very nice.Tyler is known to stretched the truth without lying.He now copies everything everyone says,but dosent get it if you say something silly he'll repeat it.We had our lengthy 1 hr meeting with Autism QLD,they visit Tyler at the school once a year.I would love to take these people home with me ,they know EVERYTHING=)

We know have Tyler walking nicely and getting hes own bag out of the car in the afternoons and walking nicely to the door,instead of racing everyone and having a meltdown...everything is about winning,he know uses a body wash and hand wash(as its about colours and smells)Weve been working on personal space,sharing/taking turns and not always winning.Hes aware of how he feels but not of others.He has some nice friends at school,hes best friend told him Mondays at school you cant play football with us its too rough.I have accepted that Tyler wont be able to write alot..That took some time,he mostly uses the alpha smart keyboard at school,hes writing at home has become messier.He wont write hes sound words inside the squares I draw for him anymore,rubs it out even if he rips the page..Is where he needs to do hes sound words on hes laptop.We've been told Tyler will never be expected to do cursive writing and writes much neater in print.I think you need to know where you need to stop pushing as my thought with Tyler has always been he can do anything it will just take him longer.He know uses the downstair toilet at school like everyone else,which is a HUGE milestone for him.I have also done the stepping stones programme for kids with disabilities and a workshop for the buddy programme I'm doing which I am now in the process being matched with another mum with kids with Aspergers=)

lol.. No social skills group this term,which I'm happy with as it didn't work for Tyler last term..I'm hoping we can cover all of our goals this term...ESP before they develop into issues later on.Term 1 next year will be fortnightly visits and will be setting us up for what help is available and where I need to go next..

Our next IEP meeting at the school is on the 26th October which will take us into April 2012. 7 weeks left of school now.

Thankyou=)

First of all i would like to say Thankyou to 2 friends that inspired me to make a blog for Tyler.You know who you are Chantell&Wendy:), and the support and friendship Chantell i needed a couple of mnths ago.I was definitely on the road of depression again and you helped me through a difficult time.Words cant express my appreciation.I think we all forget that their are people out there that we can talk to in the time of need,for me i know i need to access more from Autism QLD,carer's QLD or ASD friends i have made as we are all going through the same problems at some point.


Xxx

A few tips=)

#Give your self time to grieve.We are all take a different length of time to go through this process.Grieving can come and go and it can be brought on even by tiredness or being run down which often happens esp as this life is harder,parenting is harder.I know for me there is alot of running around,appointments,workshops,therapists ect all the time,you learn to take on too much at times as you have to take it with open hands and help your child as much as you can and when you can.Esp more so living in a country town where there isn't a lot of help available to start with.I find myself feeling low too with the more i understand about Tyler.He's world isn't easy and you always worry.Always take one day at a time,as quite often you will go 2 steps forwards and 5 steps backwards.


#Early intervention is really the key=] We have learnt this,Tyler has really come such a long way.I would hate to imagine where he would be at if he didn't have all of the help he's had.He tries very hard to appear normal and to fit in.


#Find a good support group..or other parents with ASD that you click with.Not always easy.Keep your venting to these people.You will find out fast who you can talk to,who's supportive ect.It does put on extra strain on marriages and sliblings.


#Every child with ASD, whether they have the same diagnosis is different to the next.No  2 kids are the same.


#People can be very opinionated and you will find this out fast!You know because some people know your child better than you do,or heck they just know it all about the disorder without ever experiencing it first hand.Whether its because your child is spoilt,not disciplined properly.Or the looks you may get ect....Grrrrr in the 2 yrs we've dealt with this during a meltdown which i was on the verge of tears i've only ever had one person come  up to me and tell me what a wonderful job i was doing.How much a few simple words can do.

Indroduction=)

My name is Tanyia, I'm 36 yrs old,Married and have 5 amazing children that are my world and my life and i am very proud of them!!I have decided to start blogging not only to share with family and friends Tyler's journey through life with Aspergers(which is a little harder than most) but also awareness and support from others that live in our world of ASD and a place i can share my thoughts,worries and experiences.This will also be a place where i'll escape to or need to vent on our bad days.Believe me there are plenty of those days,to understand this fully you have to walk in my shoes,but i am also grateful i don't walk in anyone's else's shoes.As when you enter this world its a real eye opener to many other disabilities.

Not are there bad days but there are days where i do fight of depression which does come hand in hand.First of all i want to say i am blessed and very lucky i have only one child with ASD and with him our lives have changed and he already has taught us so much.How you appreciate all the little things,you learn what patience is all about and what us as parents all take for granted with nurotypical children.I know i did as well before having Tyler was diagnosed.I find i just cry at the drop of a hat at what is HUGE for us(maybe not as over emotional now,but it truely does make you beam with an indescribable amount of proudness.I have been walking in these shoes now for over 2 years) ..Like Tyler learning how to smile,learning how to laugh,getting jokes,learning new skills that come naturally for most kids.He takes most things literally.Every milestone,sports(as he also has low muscle tone~but must add he has really progressed here as well)Or even he's sensory issues(is thought he has a sensory disorder)I wont ramble on too much in my intro as i have to start at the beginning...:)

Tyler is 7 1/2 years old..We are very close and have a very strong bond,i am he's world and he is mine.My promise to Tyler the day he was diagnosed was i will do everything possible to make he's life that much easier.He never asked for this world and heck i never asked for this world,none of these children should have to go through what they do.I carry alot of blame on my own shoulders but i live with it and try not to let it get me down,what can you do..I cant go back in time and change anything.If there was anything i could do or give up for Tyler to be "normal" i would.I have to say i love all my children more than life itself they are my whole world and a mother's love is very strong but a love for a child with a disability/special needs,you have a protectiveness for your child that you never knew existed,after all you are your child's advocate.

I had a very stressful pregnancy with Tyler,at 30.4 weeks gestation i went into labour with Premature Rupture of Membranes,strep b infection and contractions every 2 1/2 mins.Luckily with having double the dosage of medication to stop labour, labour stopped by the time i got to a bigger hospital equipped to handle a 30 wker.The aim was to have the steroids within 24 hrs and then he was able to be born.30 weeker wasn't a problem.I carried on with the pregnancy for another 4 weeks(another thing we learnt a baby does so much better naturally in its mother womb.We all know this but until you see this first hand,you truely see what 1 day can even do.This you dont fully understand until experiencing the roller coaster ride with a premmy),it was always prematurity verses infection.Apart from the strep b infection which i was on medication for,drips as my waters were constantly leaking for the next 4 weeks+ ronald mcdonalds, but as i was remaking my fluids every 24 hours and Tyler always had enough fluids around him and was a healthy size.At 34.4 weeks it was decided i was at high risk,i was showing signs from having an infection from waters being left open for too long.

Induction and Tyler was born with Respiratory Distress Syndrome,premature lung disease and high levels of jaundice.First week on the ventilator,to rest he's lungs as he's lungs weren't strong enough.He had just under a month in 3 different hospitals.Bonding with a premature baby is hard.You spend the first 3 weeks tube feeding and unable to breastfeed..well once a day from 36 weeks,gosh it was 6 days to see he's eyes open and to have a cuddle.Which i know is a lot more than most premmies.(we were lucky not to enter the world of having a micro premmie so our problems were nothing campared to a lot of others)I honestly think alot of he's problem's come from he's prematurity and not only that i think if he was born at 30 weeks he would of done better.Everything i have ready about what they think can cause aspergers,infection in the mother during pregnancy,lack of oxygen in the baby at birth or after..(Plus for me having 4 full term babies and they are all fine)but then makes you wonder there are a lot of premmies out there that are born earlier without aspergers,but the million dollar question what is the cause!?The numbers are increasing all the time:( The world we live in today has alot to do with it.Immunizations,food coloring/preservatives.Genetics has to play a part and as none of us knows what was around in our past generations. Aspergers is something that happens at birth and isnt noticed until the prep/preschool years.

We were told that it would take Tyler 2 yrs to catch up fully on any delays from hes prematurity.So there were always the delays,which now looking at the delays were still only slight delays nothing significant really.He was fully toilet trained at 3 1/2 yrs which is still pretty good i thought,boys are usually a little slower.Plus the birth of he's baby brother he progressed backwards as kids do.He's speech even at 4 yrs to me being hes mother i could completely understand every word he was saying,but not to others.Which was the beginning of the therapy world for us and the start of hes problems being picked up.(looking back i think what did i miss...never even heard of aspergers how super slack is that) I thing that always sticks in my mind is when the older kids would be annoying Tyler i would say just ignore them.Tyler would give them no personal space and get right in their face and scream IGNORE!!He was always loud,but so are alot of boys and he's older brother always was.Another thing when hes baby brother was a about 2 weeks old,he poked him in the eye.Had to do a hospital visit,swollen eye in a new baby.Was awful:( but i wonder now.Fascination with the eye and maybe the way he was processing information.Even today if were travelling in the car and Kayden is sleeping he will try and open hes eyes and tell him to wake up.

But i know we had him diagnosed at the youngest age possible.We were one of the lucky ones.Tyler has been in therapies since 4 years(speech and occupational therapists)Where he's low muscle tone was first noticed and during he's assessments it was sugguested that we visit a specialist.From this point is when i suspected that was something more..maybe an underlaying problem...a gut feeling:( mothers instinct!!I think when he was younger and a health nurse tried to tell me she couldnt understand he's speech,i went into a defensive mode.You dont want to hear that but when i was told by a dr at hes 4 yr check up and he was going to do up a speech therapist referral,not much you can say back to that:( During Tyler's prep year(5 yrs) there was obviously a problem.

I guess to the untrained eye you mightened of noticed,as its like that with an invisible disability.He's low muscle tone was very noticeable as well.Tyler was diagnosed at 5 1/2 years,it only took us 3 mnths for a diagnosis.Keeping a diary for the 3 mnths helped and all the research i did,i read everything i could get my hands on with Autism/Aspergers and ADHD.We were relieved to get the diagnosis,finally knew what Tyler had and where we needed to go from there and needed the diagnosis to get him the extra help at school.I am forever greatful esp in the first year after the diagnosis to family friends teachers teacher aides therapists that went the extra mile with giving us support.Acceptance and the grieving process is never easy and sometimes even if you dont understand it just having someone to listen to goes a long way.I have recently learnt that the grieving process comes and goes.Where i honestly thought it happened the once and got on with life.Its the more you learn about Aspergers and can put yourself into he's shoes,where your heart just breaks but will talk more on that later so i can finish my intro=]