Hi I'm Nicky a newbie

[niksy72]

Hi peeps, I've stumbled over this wonderful site and have been lurking for a few days so I thought I'd introduce myself

 

I'm Nicky aged 38 & married to John 45 & I have 2 dd's from my first marriage aged 14 & 12. My eldest Chloe is 14 and was diagnosed with Aspergers, ADHD & Dispraxia just over 2 years ago after me fighting since she was 4 years old with medical staff, as I just knew there was something going on with her. We saw a Paediatrician when she was 4 as Nursery at the primary school thought they saw huge signs of Dispraxia. The paediatrician was not helpful and said " There is nothing wrong with this child, School have a good imagination"!

 

Many years passed and she progressed to Middle School. Where her behaviour and traits got more and more strange, her temper /meltdown periods increased dramatically and she started to self harm in the way of head banging and hitting & scratching herself in the head, neck and chest. She was very unhappy in school and was being bullied as other kids noticed she was " different". School were less than helpful to say the least. She would either strip naked in the back of the car so she did not have to go into school, or run away from school after I'd left which was a worry as school was 8 miles away from home.

 

I had spoken with her Dad (my ex hubby) and told him that I thought she had some form of Autism. His response was that maybe it was me that was Autistic as he knew there was nothing wrong with Chloe, she was just naughty, stropped when she could not get her own way and needed to learn how to control her temper........... Then his mum pipes up.... That she thought I had Munchausen’s by proxy as I wanted there to be something wrong with my children to get attention. ( our youngest had to have a kidney removed when she was 4 due to reflux damage. The hospital did this as a last resort after 4 years of trying every alternative under the sun) She was very against the op and even rang the consultant to get it stopped..... I told them that I was going to take her to the Doctors when I was told " There is no way she will be seen by a doctor, over their dead body"! Nice that they wanted to try to help their daughter/granddaughter.....

 

I took Chloe to the GP who then referred us to the School Nurse who was not that much use at all.. A couple of weeks later during the school Holidays Chloe had a major meltdown. We locked all the doors in the house and hid the keys as she had a habit of running away or running out onto the main road outside her house in either her jarmies or underwear. She was adamant she was going to run away even though she could not find the keys, she therefore picked the biggest carving knife out of the drawer and held it to my husband’s stomach.. It took the two of us (we are 5ft 11 & 6ft 2 ) to wrestle the knife from her. I was in a fit of panic and rang Social Services and told them they'd better get out to my house and either help me or take her away!.. I just did not know what to do.. Social Services came out and had an in-depth conversation with us and we were referred to CAMHS urgently.

 

Chloe's Dad went mad. Threatened to go to Court for full Custody as I was an unfit parent as I could not control my kids. I got one of the staff from Social Services to talk to him and express their concerns. He eventually agreed to attend CAMHS. We visited CAMHS for almost a year, interviews, chats, assessments with us and Chloe. Connors Reports for us, Chloe, School, Her Dad, Grandparents and CAMHS, Video play sessions with Chloe then the visit I'd been longing for..... The Diagnosis.........

 

We were in a small room , Myself, the Social Worker from CAMHS and my ex hubby, When we received the Diagnosis of Complex Aspergers ADHD and Dispraxia,I just burst into tears. He immediately asked for a 2nd opinion as he believed that these sorts of illnesses were an excuse for naughty badly behaved or brought up kids. His mum had told him these types of conditions never existed when he was a child etc etc etc.

 

Eventually she went thru all of the results of the Connors Reports. All of his and his parents answers were identical to ours except the part about emotions where she clearly favoured my input to her dads. The Social Worker said to him, she could not believe how he thought these types of behaviour were "normal"! We were then sent on a course for 10 weeks on how to bring up & cope with a child with ADHD. It was really good and interesting. However you could tell he was only there to check up on me and see what I said, he had no input into the course what so ever.

 

Then came the issue of medication. They decided at CAMHS that Concerta XL would be the best thing to start Chloe on. He point blackly refused to allow her any medication at all. I was really impressed with CAMHS as they told him that as I had agreed and it was in Chloe's best interests to have this medication he could be charged with Child Abuse should he refuse to allow her to have it....... :0)

 

We got her onto the meds and over the next year after a few adjustments she became much more settled and happier in herself and progressed to High School where she is coming up to the end of her first year. We are currently having some problems with her behaviour & meltdown. CAMHS want to adjust her meds again to a higher dose however last time they put it up it had to be reduced as she suffered rebound and was like a junkie overdosing..

 

She has agreed to try the higher doze of 72gm on Sunday so she is with me and we can stay home, so if she has rebound again no one else will see her.

 

That’s us and our story. Sure I will be talking to you all again over the coming weeks and months..

 

Nicky

x

 

 

 

 

 

 

[emmasmum]

Welcome to the forum.

 

My daughter was diagnosed with ASD aged 14 (last year) - she was also thought to have dyspraxia as a little one.

 

I hope you find this group helpful,

Carol

[purplehaze]

Welcome to the group XXX

[Sammysnake]

Well done for fighting through in the face of such opposition. We too saw a paediatrician just before Beth was 5 because pre-school was sure there was something wrong - they thought dyspraxia. The doc also told us there was nothing to worry about and said it was a pleasure to meet such happy and sociable child. Fortunately for us, school have been really supportive and asked me to go back to the paediatrician where he diagnosed AS. The paediatrician apologised for missing it before .

 

I'm really sorry it's been such a battle for you with your ex. My husband thougth I was imagining things and being overprotective but now we have a diagnosis he is much more relaxed with Beth and doesn't come down on her so hard. I really hope you all get the support you need now and hopefully even your ex and his mum may gradually realise that if they love their daughter/granddaughter, they need to accept her diagnosis and work out how they can best support her.

 

Good luck, Sam.

[Kathryn]

That's quite a story niksy72, welcome to the forum. Well done for your fortitude: It's a hard enough battle without opposition from in laws!

 

I hope the change in meds goes smoothly and the side effects are minimal.

 

K x

 

 

[niksy72]

Thanks to you all..

 

Sh did eventually tried the new dose of her meds on Sunday, which has made a huge difference.

[smiley1590]

i have both AS and dyspraxia .... XKLX

[smiley1590]

i was hyperactive when i was younger couldn't keep still at school couldn't concentrate focus on one thing at one time LSA used to spend all their time chasing me round classroom trying get me sit down on a chair and i was very implusive but seen as disruptive naughty little girl i was very lost confused and misunderstood gets so angry and annoyed as you know something 'different' there just havn't got a name to explain it properly to others! glad and pleased the higher dose of meds are helping her i threatened my mum with a knife to her throat and CAMHS but me on anti pyschotic risperdal but didn't touch me do anything so i learn't to calm down curb my anger /temper on my own hard task to do when faced with it! i believe mine issues surrounded MH issues going on at the time depression etc

 

XKX

[trekster]

Hi peeps, I've stumbled over this wonderful site and have been lurking for a few days so I thought I'd introduce myself

 

I'm Nicky aged 38 & married to John 45 & I have 2 dd's from my first marriage aged 14 & 12. My eldest Chloe is 14 and was diagnosed with Aspergers, ADHD & Dispraxia just over 2 years ago after me fighting since she was 4 years old with medical staff, as I just knew there was something going on with her. We saw a Paediatrician when she was 4 as Nursery at the primary school thought they saw huge signs of Dispraxia. The paediatrician was not helpful and said " There is nothing wrong with this child, School have a good imagination"!

 

i guess a 2nd opinion at the time wasnt an option? i would have made a complaint about this unhelpful paed.

Many years passed and she progressed to Middle School. Where her behaviour and traits got more and more strange, her temper/meltdown periods increased dramatically and she started to self harm in the way of head banging and hitting & scratching herself in the head, neck and chest. She was very unhappy in school and was being bullied as other kids noticed she was " different". School were less than helpful to say the least. She would either strip naked in the back of the car so she did not have to go into school, or run away from school after I'd left which was a worry as school was 8 miles away from home.

 

That was me post diagnosis age 20 and going psychotic on risperidone. 10 or so years later im pleased to say im much more settled.

I had spoken with her Dad (my ex hubby) and told him that I thought she had some form of Autism. His response was that maybe it was me that was Autistic as he knew there was nothing wrong with Chloe, she was just naughty, stropped when she could not get her own way and needed to learn how to control her temper........... Then his mum pipes up.... That she thought I had Munchausen’s by proxy as I wanted there to be something wrong with my children to get attention. ( our youngest had to have a kidney removed when she was 4 due to reflux damage. The hospital did this as a last resort after 4 years of trying every alternative under the sun) She was very against the op and even rang the consultant to get it stopped..... I told them that I was going to take her to the Doctors when I was told " There is no way she will be seen by a doctor, over their dead body"! Nice that they wanted to try to help their daughter/granddaughter.....

 

i hate conditions such as MBP because it is often used inappropriately with parents who have kids with hidden conditions such as yours. i wish that condition and hypochondria (what i was often mislabelled with) would be cured. My friend had his kids taken off him due to a misdiagnosis of child abuse and didnt get an apology until 12 years later.

I took Chloe to the GP who then referred us to the School Nurse who was not that much use at all.. A couple of weeks later during the school Holidays Chloe had a major meltdown. We locked all the doors in the house and hid the keys as she had a habit of running away or running out onto the main road outside her house in either her jarmies or underwear. She was adamant she was going to run away even though she could not find the keys, she therefore picked the biggest carving knife out of the drawer and held it to my husband’s stomach.. It took the two of us (we are 5ft 11 & 6ft 2 ) to wrestle the knife from her. I was in a fit of panic and rang Social Services and told them they'd better get out to my house and either help me or take her away!.. I just did not know what to do.. Social Services came out and had an in-depth conversation with us and we were referred to CAMHS urgently.

 

That upsets me that it always takes a crisis in order for the authorities to listen. Although my situation wasnt so desperate i was severely depressed and my gran had to beg for home help so she could continue caring for me. 4 years later ive got my own supported living place with a few external problems.

Chloe's Dad went mad. Threatened to go to Court for full Custody as I was an unfit parent as I could not control my kids. I got one of the staff from Social Services to talk to him and express their concerns. He eventually agreed to attend CAMHS. We visited CAMHS for almost a year, interviews, chats, assessments with us and Chloe. Connors Reports for us, Chloe, School, Her Dad, Grandparents and CAMHS, Video play sessions with Chloe then the visit I'd been longing for..... The Diagnosis.........

 

Pleased you finally got recognition of the fact you knew your kid better than so called experts.

We were in a small room , Myself, the Social Worker from CAMHS and my ex hubby, When we received the Diagnosis of Complex Aspergers ADHD and Dispraxia,I just burst into tears. He immediately asked for a 2nd opinion as he believed that these sorts of illnesses were an excuse for naughty badly behaved or brought up kids. His mum had told him these types of conditions never existed when he was a child etc etc etc.

 

Shame on your hubbys mum for her brainwashing and ignorant attitude. There is a thread on here called "what to do when family wont accept autism" in the help and advice section (i think thats the title).

Eventually she went thru all of the results of the Connors Reports. All of his and his parents answers were identical to ours except the part about emotions where she clearly favoured my input to her dads. The Social Worker said to him, she could not believe how he thought these types of behaviour were "normal"! We were then sent on a course for 10 weeks on how to bring up & cope with a child with ADHD. It was really good and interesting. However you could tell he was only there to check up on me and see what I said, he had no input into the course what so ever.

 

Could he possibly have ASD? It often runs in families and my parents used to be in denial of my aspergers and the effects of my aspergers. There is also the HELP! program run by the NAS. http://www.autism.org.uk/Living-with-autis...-workshops.aspx Theres one course thats about "managing anger in children age 8 to 16 with asperger syndrome"

Then came the issue of medication. They decided at CAMHS that Concerta XL would be the best thing to start Chloe on. He point blackly refused to allow her any medication at all. I was really impressed with CAMHS as they told him that as I had agreed and it was in Chloe's best interests to have this medication he could be charged with Child Abuse should he refuse to allow her to have it....... :0)

 

Thats interesting, what if a parent refuses as they wish to try dietary interventions instead?

We got her onto the meds and over the next year after a few adjustments she became much more settled and happier in herself and progressed to High School where she is coming up to the end of her first year. We are currently having some problems with her behaviour & meltdown. CAMHS want to adjust her meds again to a higher dose however last time they put it up it had to be reduced as she suffered rebound and was like a junkie overdosing..

 

She has agreed to try the higher doze of 72gm on Sunday so she is with me and we can stay home, so if she has rebound again no one else will see her.

 

That’s us and our story. Sure I will be talking to you all again over the coming weeks and months..

 

Nicky

x

 

Took 18 months of pestering our doctor before i was the 1st person in that practice to be diagnosed as asperger.

 

[trekster]

Well done for fighting through in the face of such opposition. We too saw a paediatrician just before Beth was 5 because pre-school was sure there was something wrong - they thought dyspraxia. The doc also told us there was nothing to worry about and said it was a pleasure to meet such happy and sociable child. Fortunately for us, school have been really supportive and asked me to go back to the paediatrician where he diagnosed AS. The paediatrician apologised for missing it before .

 

I'm really sorry it's been such a battle for you with your ex. My husband thought I was imagining things and being overprotective but now we have a diagnosis he is much more relaxed with Beth and doesn't come down on her so hard. I really hope you all get the support you need now and hopefully even your ex and his mum may gradually realise that if they love their daughter/granddaughter, they need to accept her diagnosis and work out how they can best support her.

 

Good luck, Sam.

 

Pleased you got an apology, i got one years later from my ortho when it wasnt needed.

[trekster]

Thanks to you all..

 

She did eventually tried the new dose of her meds on Sunday, which has made a huge difference.

 

 

Pleased it helped her!