He went from a happy relaxed little boy, to a boy who was hyperactive, craved negative attention, couldn't concentrate and was disruptive at Daycare. At 3 we started seeing a paediatrician and Dan was diagnosed with ADHD and immediately started on Ritalin.....We also changed his diet and had tried natural therapies before we saw the paediatrician. After 3 years and different medications the paediatrician said that Dan was more psych than he could cope with and we were off to see Dr Wilson in June 2008. Dr Wilson Diagnosed Dan with pdd-nos, Bipolar and ADHD. He tried an anti depressant and wanted Dan on 14 dexamphetimine a day....We went as high as 7. In the December Dan had his first suicide attempt...He would say he hated the world and he wanted to die and go to god. When I rang the Psych, I was told to take him off all meds and he would see me on the 20th of January. My doctor gave us some catapres (helps kids sleep) to calm him through the holidays but over Christmas he had his second attempt. It took my husband and Brother to pull him back over the railing....On the way home I googled mental health support and was told to come to the Mater Childrens hospital....after 5 hours of waiting in a safe room, with Dan losing it, we were told there were no beds and there was nothing we could do.....but gave us an appointment to CYMHS (child youth mental health) in our area on the 4th of January. It took 2 seconds for the intake officer to realise how dire our situation was and a couple of days later we were in front of a doctor, Sue holding Dans feet, my holding his arms...I was black and blue.....He started back on Ritalin and Risperadone and we were on the wait list for a hospital stay......I was assaulted at work in feb '09 and Dan was going down hill faster....He had made 2 attempts to jump out of the car, was jumping on the roof and had extremely unsafe behaviour. the 4th of March He finally had a bed. He was taken off all medication and Diagnosed with Aspergers, ADHD (the worst they had ever seen) and reactive attachment.....he was in there for 10 weeks......The only support we received was from child safety when they were called in, as they were sure Dan was being abused. (he would pull his pants down a lot in public at the time and it was a red flag for me sighs) Child safety commended us on our parenting and said they had no idea why they were called in and thanked us for not putting Dan into the child Safety system. He came out no better than he went in.....When he came out our lovely doctor put him back on the risperadone and ritalin and we were in our year of horror..........first My assault, then Dan's hospital stay, then my beloved Poppa passed away, then I broke my ankle and was in a wheel chair for 5 months, then my nanna passed to be with my poppa in the November...all this time Dan was displaying unsafe behaviour, was suspended 27 times and was home by 9am from school for being unsafe. I was in a wheel chair, I had undergone 3 surgeries and had permanent Damage to my left wrist. Darryl had to work, we had no support......looking back hell knows how we got through that year!!!
these are just several of the emails I wrote that year begging for support.
Dear Mr Abott
This is a letter I have just sent Anna Bligh. I
know you are a very busy man but if Kevin Rudd is to take over the hospitals
now, you will when you win the election. This has been going on for over 12
months with my little boy. Is there any way you can shed some light so that I
don't lose him please.
I am now begging for someone to help
us
Regards
Kylie Harvey
Ms Bligh,
Since Daniels release last Tuesday he has emotionally
been the same as he was when he was first admitted on Friday the 7th of May to
the Mater children's CYMHS unit.
I was made aware that I could represent Daniel to the
Emergency department if his emotional stability became worse.
Yesterday, Monday the 17th of May Daniel went on a 2 and
a half hour meltdown at school, starting in leaving the classroom, being
verbally abusive and escalating to pulling over a brick wall with his bare hands
and then throwing it at students and teachers, running away and the teachers not
knowing where he was and threatening him with the police, this resulted in a 20
day suspension.
MY ISSUES.
If he had not been released from hospital this
would not of occurred. I begged staff, saying he was not settled. I emailed your
office to say he was not settled and all I was told is I could represent him to
the Mater Ed for an evaluation. Have you any Idea the Trauma that puts on my
little boy having to do that time after time and I wasn't guaranteed a bed and
we have been turned away in the past and had to leave with Daniel in the same
emotional state as when we arrived.
They say they have no beds. I say if you don't find a
bed for my little boy at the Mater and keep him in until he can function in
society, at school and home at some level, he will end up killing himself or
someone else in the process. I am afraid that this last meltdown has made me
lose my little boy.
Once we were at the Hospital yesterday he was depressed,
withdrawn and teary. An hour later it took a doctor and 3 security guards a
nurse and myself to subdue him. We had to wait nearly 5 hours before a bed could
be found at the Royal Brisbane hospital, and I have been led to believe once a
bed becomes available at the Mater he will go back there for his own safety,
other peoples safety, a medication review and diagnosis review. I am sure after
this episode you will do everything in your power to make sure he is not let
home until he becomes safe again.
Can I remind you this is an 8 year old boy, who told his
father on the Wednesday morning after being released the Tuesday night that he
wanted his father to stab him in the temple so he could die and go up to
god.
He now has no self esteem, no self worth, no friends, no
positive schooling environment and we have little support.
The second issue is his
school.
Once Daniel Transferred back to Berrinba east state
school, from Tennyson special school, I asked if Daniel was eligible for the
Bardon road behaviour unit. I was told he was not. I have asked why he can't be
in a smaller class in a better environment that will help with his anxieties.
Daniels pediatrician has asked if he could go tot he Bardon Road behaviour unit
and the School said no.
After Daniels rampage at school yesterday, I have been
now informed he was accepted into the Bardon Road behaviour unit at the same
time he was accepted into Tennyson last year and he will be given the next
vacant spot that becomes available there.
Now, Daniel's meltdown yesterday could of been avoided
at school if he was in an environment conducive for teaching him, more quiet,
smaller teacher to child ratio, as Tennyson had positive results with Daniel
there. Daniel gets lost in a class of 27 children with his issues and at the
moment he has no involvement with the SEU as they are trying to get a teacher
for him full time through the Negotiated education plan funding. This was
applied for at the start of the year and still hasn't come through.
I am totally disgusted in the way the school and the
district have handled themselves. I know my son has many disabilities and takes
up a lot of time but he could of reintegrated back to Berrinba from Tennyson
through the behaviour support unit rather than just thrown back into a
classroom.
People need to be held accountable. As Daniels parent I
have been begging for more support, for some support, at this moment apart from
logan CYMHS we get no support. I have even put in calls to DSQ and emailed them
the last week and no one has contacted me.
This is beyond a joke.
I have been asked by a current affair to do a story on
all of this, as it is a huge issue about the hospitals, disabilities and the way
the schools are being run and so far I have held off hoping that you will help
support us through this most difficult time in our life.
think of your own children, how would you feel if they
were so out of control it took security guards to keep them in a
room!!
Please I am begging you to help me keep Daniel is
hospital until he is safe.
I am begging you to help arrange a better setting for
his education
Please, please help my little boy
To whom it may concern,
I am a mother of a 8 year old boy called Daniel. Before
I explain our situation let me give you some history.
I was told I would probably never have children. 8 years
I tried, when I fell pregnant I was in an extremely violent situation and spent
most of the pregnancy full of physical and emotional abuse. I had a hard labor
and an emergency cesarean. My mum took care of Daniel for the first few weeks as
an attempted epidural went to my spine and I could not care for Daniel properly.
I was in the Domestic violence situation for 10 months. I left when I was choked
til I passed out while holding Daniel. I was diagnosed with post natal
depression when Daniel was 14 months old and started feeling "normal" again with
medication. At 2 Daniel had to have his adenoids and tonsils taken out. He had
sleep apnea, reflux and colic. At 2 and a half on an access visit , Daniel
witnessed his biological father kick me to the ground, punching me and choking
me and kicking me while Daniel was left screaming mummy, mummy on the other side
of the security screen door. Daniel has not seen that man since. At 3 he started
to display behaviors indicative of ADHD and was put on Ritalin. It has been
a downward spiral for him since then.
Daniel is an extremely loving, gentle, sweet soul who is
tormented by life. He loves Football and sport in general. He loves to swim and
fish, he loves watching documentaries or anything where he can gain knowledge.
He is fantastic at math's, way beyond his 8 years. He loves to play with his
sister and likes being with his family. He has several children that he plays
with on his terms. He loves affection as long as he is controlling the touch. He
loves to help and to do chores. He adores his grandparents and great
grandparents.
Daniel has been diagnosed with many different illnesses
and disabilities.
ADHD
Sensory processing
Language and Auditory processing
Aspergers
Reactive attachment disorder
Trauma
Anxiety
Separation anxiety
speech issues
fine and gross motor issues.
He however does not have an intellectual disability BUT
he does not function well in society as a whole. The behaviors he has displayed
are
extreme violence to others
self harm
suicidal thoughts
hyperactivity
lack of impulse control
poor concentration
little remorse after hurting people.
Shows little eye contact.
sensory issues with all 5 senses
Cannot be in a room alone
screams ,yells, bites, pinches, punches and
kicks
has been suspended 27 times last year.
10 weeks he spent in the MATER CYMHS unit.
His English is extremely far behind.
He cannot sound out words.
May have dyslexia
Small noises annoy him when he is trying to
concentrate.
He lashes out when he is is in sensory
overload.
Seeks sensory stimulation
Avoids other sensory stimulation
I am writing to you and to some of you I have written
before to now beg as a parent to not let my son fall through anymore
cracks.
This is our dilemma
Daniel does not have an intellectual disability but has
extreme issues functioning in all aspects of life.........He is borderline for
Disability Services Queensland.
Daniel has a psychiatric illness and Mental health
issues.............He is attending Tennyson special school and if his Aspergers
is prominent enough they cannot have him there.
Daniel has extreme Mental health issues and needs one on
one to be main streamed.....................I have been told that the NEP
funding we have applied for will probably not be successful.
In the months to come, Daniel maybe transferred back to
Berrinba state school where it is virtually impossible to teach him with all his
complex issues. He will miss out on the schooling he deserves, his self esteem
will again hit rock bottom and he will be on the path to self destruction once
more.
We have had the involvement of the RAI program over the
last 6 months. I have been extremely let down by this service. They have not met
our needs at all. They have ignored me as a parent on many occasions. They have
lied in meetings about the support they have been giving me. They constantly
pass responsibility onto other people and have not been supportive at all.
Daniel was in the MATER CYMHS unit for ten weeks early
in 2009. All they were able to diagnose was the ADHD as he was to hyperactive to
sit any of the tests. They told me that I would have to seek out the testing as
an out patient to confirm the other disabilities Daniel has. I have been trying
to have this done. I have also not represented back to the MATER children's
emergency Department as on 3 occasions I was sent away with no support and
having Daniel worked up and running across Stanley St in peak traffic. What is
the point of the CYMHS unit if they would not listen to my pleads to change the
medication he was on. The straterra they had him on did not work. He was in an
artificial environment in the CYMHS unit where he had the attention of the
nurses and the older children in the hospital. He was rarely challenged by life
in general and therefore his anxieties were at a minimum in hospital. If he
didn't cope at the in hospital school, he came back up to the ward. He had
endless activities that he could cycle through, very rarely did he have to sit
still and learn, very rarely was he challenged by other children in the unit,
very rarely did he have to cope with the noises of a busy school. On paper you
may say Daniel received the best care but in reality he was released from
hospital with little diagnostic testing, little input from speech and
occupational therapists that could of picked up his sensory profile 6 months
early than the education Dept Occupational therapist did. He was medically in
the same position as when he was first admitted and when he saw the doctors at
Logan CYMHS his medication was reviewed and changed and we have had a small
change in his behavior. I have been extremely let down by the MATER hospital and
I am angry that they say they gave my son and my family the best support
possible.
We have also had wonderful support through Child Safety.
They came to my home and saw that Daniel was being looked after by 2 extremely
loving and caring parents in an environment where we are exhausted and worn out.
I have not looked to Child Safety for any support as I have no intention of ever
giving up on my son. We are good parents and Daniel deserves to live with us and
to be supported in our home where he has the care and concern of all the people
around him. If Child Safety are able to help us to support Daniel to stay in the
home I would love to hear what they could do to help us.
We have wonderful support through Logan CYMHS but as you
would be well aware their waiting lists are extremely long and my son cannot
wait much longer.
I have been emailing the QLD government for the past
year. I am feeling extremely frustrated as my son in constantly falling through
the cracks that no one is willing to fix.
These are our needs for Daniel
for him to be enrolled in a school who can support him
through his complex issues and challenging behavior.
Support us with Psychological help, occupational
therapists and speech therapists in the home and at school.
Offer some Respite for both Daniel and us as parents so
we can function as a family.
give our family on going support through therapeutic
support to ensure our whole families well being.
I need someone to tell us what funding is the best
funding for Daniel and I need someone to come to us and help us fill in the
paper work properly so that we get the support we need. Our family needs support
to support Daniel through a world that is extremely difficult for him to live in
each day.
Anything you could do to help us would be muchly
appreciated
sincerely
Kylie Harvey
My name is Kylie Harvey. I am
married with two children. I have a seven year old boy that has been diagnosed
with many different disabilities and I am still unsure if these are a proper
diagnosis.
Daniel has ADHD, Aspergers,
trauma related anxiety, separation anxiety, there has been talk about
oppositional defiance disorder, depression, sensory seeking, language and
processing disorders and his IQ is below average.
When Daniel is anxious he builds
into a meltdown extremely quickly. He is violent, abusive, and rude and in the
past has rarely shown remorse for anything he has done. He has punched holes in
walls and at times left me black and blue.
He spent 10 weeks in the Mater
hospital in the children’s youth and mental health ward at the start of the
year. All they were able to diagnose was the ADHD as they couldn’t get him to
sit still long enough to complete any tests other than an EEG.
He has spent 9 full days at
school this year; he has regularly been sent home or suspended. He has just
started attending Tennyson Special School.
I have applied for DSQ funding,
but before it can be submitted to the committee I need to fill out more forms
and include his latest reports and diagnosis.
I have had 3 weeks of respite in
the last 12 months and that is all since 2005 when he was first diagnosed with
ADHD.
In the same fortnight Daniel
first went to hospital, I was assaulted at work by a client. I have spent the
last 8 months with limited use of my left hand and dealing with PTSD myself. I
have been hanging in by a thread.
We have the support of Logan
CYMHS who regularly call me in regards to medication and come to my house and do
home visits with myself, my husband and my children. Without them my family
would be totally lost right now.
We were given intensive support
by a program called RAI referral for active intervention. I have been extremely
let down by their service.
I have been accused in
forgetting my daughter in all this turmoil, which I certainly have not. I have
been accused of hindering RAI in supporting us. I have been unable to attend
their parenting course due to my mobility situation, pain and I have developed
agoraphobia. I have been honest and thrown myself to the mercy of organisations
to try to get as much help as I could while I was unable to support my children
properly. Since July I have had a broken ankle and tendonitis in my left wrist.
Still with the physical and
emotional difficulties apart from 2 weeks I have somehow managed to still take
care of my children while my husband works. My daughter is in preschool, which
makes it somewhat easier to deal with Daniel one on one.
I have been awake all night
completely shattered because instead of finding out what we are needing as a
family, I am being blamed and accused of hindering my family gaining the proper
support. I have been lobbying the government state and federal for the right
help for 12 months now.
I feel like I am just Daniels
mother that my concerns for my family are not being heard and my suggestions are
swept under the carpet and ignored. My children are a part of me. Our life is
extremely difficult but I do know right now I am doing every single thing I can
to support my family through this chaotic life.
I have lost confidence in the
organisation that is supposed to be supporting us. I have lost trust and faith
that a 7 year old boy is entitled to as much support as possible. I am
devastated that people keep saying it takes time to organise support. My little
boy is running out of time. He has been suicidal as recent as this morning. I am
totally guttered. I am unsure of what road to look to next to find the support
my family needs.
I feel incredibly let down and
not taken seriously. I will and have done anything I can do for my babies.
I guess I am wondering if there
is anything you can do to help my son. To show how children with mental health
issues are falling through the cracks and are put in the too hard basket.
I am begging for someone to step
in and take the strain away from us so that we can learn to cope and become a
strong family unit
We desperately need help
Sincerely
I am alot stronger now myself......So I have been able to cope much better and keep him out of hospital...hell knows how!!! He is very agitated and his anxiety is so high all the time....It is like living with a powder keg. I love my little man to bits and if I was told this is what Iife would be like I would do it all over again in a heart beat.....but it is so hard to see your child hurting and no one wanting to listen.....
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