disabilitykids

Hi all. My 5yr old autistic daughter started school this year .She has been diagnosed with Autism, global developemental delay and has severe speach difficulties accompanied with Echolia she recieved a level 3 funding to assist her educational needs there are 4 speacial needs children at her small rural school her fellow prep classmate recieved a level 2 funding (the difference $8000.00.) and our principle has informed me that these childrens funding has been "combined" (i was'nt asked just informed) and as far as I understand he insists it 's to be used on the wages of teachers aides -22hrs out of 25pr wk aides that are shared amongst 'all' children in the class.I recently attended a CISCA seminar which covered aspects of this funding - applying for,Creating a SSG = Student Support Groups,etc...befor I enrolled my daughter upon speaking with the principle I informed him of my daughters speach difficulties at the time before her diagnoses he assured me the school would assist in helping her with continued speach thearapy and O.T.Now he states that the funding can only be used on teachers aides?And that he is the person who decides on how my daughters funding is spent I am of the understanding it is my daugters SSG whom agree on how the funding is spent on her education plan?

I am new to all this and would really appreciate advise and knowledge from parents with experience in this field.

Sincerly Suzii

 

On Tuesday night Erin slipped and hit her head on the bulbar of my 4x4. She was chasing the boy next door and decided to use the bulbar to pull herself around the truck. I examined her then sent her off to play again while keeping an eye out for the "typical" symptoms. She displayed no symptoms except a bit of a headache and went to bed fine. Next day she still had headache but her co-ordination was off and she had an attitude. I just put it down to a bad ADD day and wrote it off. Next day she was having difficulty doing things and didnt seem "right" but begged that I allow her to go to KArate as she needs to practice some things for her upcoming grading.  While there I noticed that there was something wrong but couldnt put my finger on it so continued to observe until I could. She had difficulty remembering how to do things even after she had done the same thing over and over again, she was very slow to react, had to tell her partner when she was ready to start (sometimes she missed this) and her co-ordination wasnt the best, she also got really frustated that she couldnt remember what she had to do so got angry and mouthy.

I remembered a few years back she had been very ill and had not shown "typical" symptoms so no-one would take me seriously until she fell asleep 6 times during the day and twice in hospital while waiting for Doctor to get things. Next week Nephew came down with same thing and had to go to hospital. His mother told the Paed about Erin and he said they dont show "typical" symptoms because they are always on the go, medical staff need to listen to parents and take into account what is not normal behaviour for the child to make a diagnosis but not many are willing to do this as they are usually G.Ps who dont have an understanding in ADHD. Armed with this rememberance I demanded to see our G.P and spelt out everything that had happened and he concluded that she had a mild concussion but her symptoms were not what they would normally look for and ordered an x-ray to be on the safe side. He suggested I keep a careful note of injuries and symptoms from now on and if my intuition tells me something is not right to see him or demand the hospital call him so he explain Erin to the Doctor on Duty.

Many alphabet kids dont show "typical" symptoms and are overlooked until they are extreme. Write symptoms down and if things seem dodgy then take them to the doctor or hospital with the symptoms and demand they pay attention or call for a Paed who can tell them more about these children.

Hi, I am a single mum to 2 adorable cherubs. My 5 year old son was porn 5 weeks prem and spent 3 weeks in hospital due to feeding issues and was then readmitted on and off due to laryngotrachea malacia (softening of the throat) which was badly affected by his severe reflux. At 12 months old he became very sick sleeping up to 21 hours a day and after seeing numerous Dr's and specialists it was discovered he had sleep apnea and epilepsy. After surgery and medication he started to pick up again. He always had speech delays and communication difficulties and at 4 years old was diagnosed on the Autism spectrum. My daughter whom is now 2 years and 8 months was also bought into the world a little early but only by 3 1/2 weeks. She also spent 3 weeks on hospital due to jaundice and feeding issues. It took her 10 weeks to reach her original birth weight again. She had her first major seizure at 7 months old and her epilepsy is still uncontrolable. She also has hemaplegia cerebral palsy and and last year was diagnosed with autism as well. She is lucky as she has a very determined personality and a very positive spirit, she is doing many things that they thought she would never achieve.

Our house is like a therapy house, I have learnt to sign so that I can teach both children to sign, we use PECs and ASL books and boards. We have therapy balls and equipment everywhere. You could say my life has become that of trying to give my children the best start possible, just like most other mother's and father's out there. We don't have family where we live as we had to move away from our family to gain more medical and therapy support, so I rely on the phone and emails a lot to get through as sometimes it can get  a bit tough. Slowly I am building up a friend network but that takes time, as you would all know, especially when you have children with special needs.

I am however involved in the running of a support group "My Time" in Rockhampton. This year I am also setting up a website so I can sell aides/toys etc that I have found useful for my children at a low cost, as I have found it hard to find many things. I do sell some on ebay but I think a website would be more afunctional, well I hope lol.

So that is my story and I hope you don't mind me blogging here. Both my children spend time in hospital and have many ups and downs. Last year alone there were 9 admissions into hosptial. So having a place I can express my worries and JOYS would be great...

 

Well Jedd goes under again (this will be time number 6) ON Tuesday, Dec 2nd.

Please pray all goes well.

He is having his hypospadias re-reparied. He had it once and it failed so it needs to be re-done. For those of you who don't know what the Hypospadias is, his Urethra (the tube that passes urine in both males and females) was malformed at birth. His was a grade one, the LEAST severe, thank heavens.

He also had very thin skin on one side of his penis and they had to correct that as well. His forskin was also malformed too, it was all on one side. Those 2 things are VERY common in boys who have a hypopspadias.

They originally took the foreskin (circimsized him, he had to be all though we would have done it anyways atbirth but coudl not due to the hypposapadis)anyways, they took the forskin and used it to creat the new urethra. they put in a foley catheter and he came home with it in palce for a bout a week and a half. That was too allow the "new" urethra to heal and NOT heal to itself. That would ensure that he coudl still pass urine after the repair.

Well, he had alot of post operative swelling last time. That cause him to "break" the stiches from the skin graph. They had to graph some of the foreskin as well to the thin side of the penis to make it more"normal". Because he broke the stiches, he developed a fistual. the fistual is allowing urine to pass through the wrong part of his shaft.

They will use a camera this time to take a look and see if they need to completely re-do eerything. This would be the worst case situation.  IF the fistual is too big this is what they will have to do though.... :(

As long as the fistual is small, this time they will take off some excess scar tissue and re-graph to close the fistula.

The differnce woudl be about 1.5 hours in the operating room versus aroudn 4.5-5 hours in the operating room. BIG DIFFERNCE.....There is also  HUGE differnce in the after care I willahve to provide at home.

If they only have to do the fistual repair, he will look like and I will treat him like a newly circumsized baby. If they do a complete repair, eh will come home iwth the foley cath. in place and I will have to do the double diapers again for at least 2 weeks. (I have to cut a hole in one and put anohter one around it to allow the cath, and packing and everythign room to breathe, it's no pcinic, believe me. the post op pain is also MUCH worse if they have to do a complete job as well.

I know all this sounds drastic, but to look at him now, he does look normal, if you didn't know he had an issue "down there" you would not be able to tell. It's jsutlike he ahs a bit of extra forskin left ofver on one side from being circumsized. NOW before his first repair, you could tell there was an issue, just not a major one.

Just pray that all goes well and the scope (camera) will show only the fistula. That way they can just repair the scar tissue and close the fistual and we can be done with operating rooms FOREVER!!!!!!

It may be a bit before I can update on here, but Jedd's Caringbridge site will be updated the day of the surgery when we get home that night. It is Jedd's (Deuce's) main "information hub" about his medical issues. Here is the site below. You can click on the email notification button and it will email  you when ever I update his site. It will NOT span you or sell your email address. Caringbridge is aprivate .org that does their services free for medically neeedy fmailes to keep us all connected across the world. So don't worry aobut any issues with them. Here is his site:

http://www.caringbridge.org/visit/jedd

You have to enter your emial to get in but I have it set that way so that if someoen leaves something nasty in the guestbooka nd I have to delte it, that provides me with a way to block that user form posting again. yes you amy not t hink peopel do that , but it has  happend to others I know.

THANKS!!!!! I  know this was long....LOL Jessica

sunday night i had the biggest scare of my life i ended up in hospital with my partner and was diagnosed with bacterial meningitis i had to get my mother to watch the kids while i had to be at the hospital it was a touch and go time while at the hospital because the hospital kept telling us you can die from this  menigitis is an infection of the lining of the brain all test were done and then they have him on antibiotics and fluids and has to stay in hospital i hope he gets better soon

hi my son has kdney reflux. to look at him you would never know there was anything wrong.

He add his first stay at hospital at 5 weeks old the next at 12 weeks old then an op at six month he is due for another op next month.

he has scans every three months. But I try to keep his home life as normal as posable. but he is quite spoiled as i feel so much guilt about him going through everything

he is a very energitic little man.  He has way to much energy which and am praying isjust him and not  something else.

hope you don't mind me bloging here

if you are in need of special needs products here is an excellent site just for special needs kids www.adaptivechild.com they have some amazing products

He doesn't sit still. He is on the move

He loves dinosaurs, all the more.

He steals food, and loves to eat

He's got a smile you just can't beat.

he has ADHD, and FAS

and don't let him near the family pet

He's outa school and on the run

Oh, there he is he's having fun

"common, back to school"

"Okay" and we're on the move.

Tattered clothes, ripped up jeans

Mud on the ears, tears a stream

Oh those kids they are so mean.

"But their my friends, we just play

They like me, that's just their way:

No, it ain't I wanna say.

They hate you, laugh and hold you in disdain.

you just don't know

the truth of what they do.

Your mom did drink,

You're dad's now in the clink.

They fought, they drank, they left you on the brink

Dad doesn't understand,

Mom, She has too many kids at hand.

And they left you with me.

Didn't let you go easily.

One day, maybe you'll see....

That things are not as they seem.

Do you attach, do you bond

We don't know,

but one day you'll be gone.

To big, and bold and all grown up,

and will we have done the best for you

Will you one day find your rest

Will you one day be your best

Will you be on your own

Will you one day be all grown

Will you be able to do the things

Adults do and see as simplicity?

Will you know hot from Cold?

Will you be quiet or bold?

right now your just 7 years old...

Oh, you are much too old.

You've seen too much

You know too well

The pain and hurt

of dispare.

If I could spare you,

Oh I would

Take your burden and that I'd bear

But all I can do is hold the hand

That nurtures you and says I care

That stumbles and stumbles but still cares

Even when you won't wear underwear.

You stole my heart

Six years ago

When I got the call

you'd climbed on the stove

While she cooked,

and you almost cooked.

Your such a dear, and we want to hold you near

But will you let us, can you love

or is your heart not but dispare.

Oh for you, I do pray

That your pain will go away

That your mind will be set free

from the holes that bind it where

Only live pain and dispair...

The unresolved issue of a little boy in care, with Adhd, FASD and possibly reactive attachement disorder...

i hope all is well with everyone and there youngsters please feel free to blog here, ask questions and also if you have any questions just put them here and if i know any advice or have any suggestions  on the subject i will gladly post it

the reason i started this group is because i have four children with either a disability or health issues and i thought that there alot of people that go through some terrifing ordeals and need some support for them too.