Why oh why is it so hard to see written words on paper describing your child's condition so hard to deal with?
I've seen a number of speech & language therapists, paediatricians, ed psychologists and occupational therapists over the years. When they say they will send the reports in the post at the time I acknowledge and move on.
From the moment the report comes through the door and I see the letter is addressed 'To the parent/career of Zach/Zav or Zi' my hands start going sweaty, my heart starts pounding -I feel like its my first day at school or I'm about to walk the plank.
I open the letter, most times knowing what's going to be written and all very true of my sons. For some strange reason because it's on paper it feels so final, rubber stamped. Tears roll down my eyes as I read all the words.
It's a feeling that is so hard to describe.
' Zach presents with significant difficulties in the areas of his attention and listening, social skills, receptive and expressive language skills associated with his diagnosis of autism. Zach has severe receptive and expressive language disorder'
'Zav has severely delayed receptive and expressive language with social communication difficulties'
'Zi presents with delayed social communication skills and also displays social interaction difficulties'
Wednesday 30 July 2014
Friday 18 July 2014
Milestones
There has only been a few times in my life when I have really cried with joy.
When you have a child you remember all their milestones; when they recognise you for the first time, when they first crawl and walk, when they go to the toilet independently and when they first called you mummy.
When Zach was diagnosed at 3, he had no language and I was told not to expect any. At 5 he started to copy what was said to him (echolalia) and would spend most his time making random sounds. It took 3 and a half years and help from the special needs health visitor to toilet train him.
I remember having to set the alarm on my phone for 5.30pm everyday to put a nappy on him to do a poo, because he would happily wee in a toilet but would not poo. So by 5.45pm I would take the dirty nappy off him, wipe him clean and put pants back on him.
I went to pick Zach up from school, he was 6 at this point. One of his class members came out of the class, screamed mummy ran to her and gave his mum a hug. Shortly after Zach did exactly the same and hugged me tightly. Whether he was just copying his class member or not, he called me mummy and gave me an almighty hug.
He called me mummy, he knows I'm his mummy. I waited 6 years for him to call me mummy- and it was the best feeling in the world. I cried so much his teacher had to console me, because I just couldn't stop.
Zav did have language but nobody could understand what on earth he was saying (Zi is like this now)
So for a long time, I was 'May' to him. I loved it, I am his May. It made me feel incredibly special, he
couldn't say mummy so he used another word 'May'
When you have a child you remember all their milestones; when they recognise you for the first time, when they first crawl and walk, when they go to the toilet independently and when they first called you mummy.
When Zach was diagnosed at 3, he had no language and I was told not to expect any. At 5 he started to copy what was said to him (echolalia) and would spend most his time making random sounds. It took 3 and a half years and help from the special needs health visitor to toilet train him.
I remember having to set the alarm on my phone for 5.30pm everyday to put a nappy on him to do a poo, because he would happily wee in a toilet but would not poo. So by 5.45pm I would take the dirty nappy off him, wipe him clean and put pants back on him.
I went to pick Zach up from school, he was 6 at this point. One of his class members came out of the class, screamed mummy ran to her and gave his mum a hug. Shortly after Zach did exactly the same and hugged me tightly. Whether he was just copying his class member or not, he called me mummy and gave me an almighty hug.
He called me mummy, he knows I'm his mummy. I waited 6 years for him to call me mummy- and it was the best feeling in the world. I cried so much his teacher had to console me, because I just couldn't stop.
Zav did have language but nobody could understand what on earth he was saying (Zi is like this now)
So for a long time, I was 'May' to him. I loved it, I am his May. It made me feel incredibly special, he
couldn't say mummy so he used another word 'May'
Friday 11 July 2014
'Control your kids'
Saturday arrives and I realise I have no food in the house. I have to go to the local supermarket with all the children!!
Knowing I have to do this, I add going to the supermarket to my boys daily routine in the kitchen, bedroom and add it to their now & next charts. I get them round the table and write a list of what we need together so they feel like they are involved.
Right we are ready, kids in the car - check, list written - check, change of clothes in the boot in case of an accident - check, their now & next charts - check.
I'm driving down the road and realise in trying to be so organised I've forgotten my bag with my purse!! I'm so silly
So I have to turn around, in doing so Zach starts rocking in his chair ( first signs of him about to have a meltdown) I'm getting flustered because I know what's about to happen. I tell him verbally mummy's forgotten her purse and have to go back. Zach doesn't understand - more so because when I am flustered I tend to speak really fast which most normal people don't understand me so there is no way my autistic son with very little understanding will comprehend what is going on.
He starts kicking the chair, and starts screaming in rhyme, Zav starts crying and Zi is pressing the window lock on & off. I feel like a volcano is about to erupt in my head but I calmly continue home to get my purse. We eventually get to the supermarket with 20mins of screaming in rhyme, crying, and pressing the window lock.
With all my soldiers holding onto Zans buggy we walk into the supermarket. I am stressed beyond belief but I keep my head focused on the mission at hand, so we can be in and out.
I glimpse a friend, she see's me with the kids and runs off down another aisle acting like she never saw us. I am a little confused, but then remember the last time I saw her was at her daughters birthday party that me and the kids were invited to. Zach followed her cat around and scared it half to death and then attempted to eat its food. Zav decided he wanted to show me their fish but because I was so busy talking he took the fish out the tank and literally brought it to me cupped in his hands. So I could understand why she wanted to pretend she didn't see me.
We get all the shopping and on the way to the tills we see a store cleaner, mopping up a spillage and places a yellow a board, to let people know the floor is wet and be careful . Zach always has the urge to fall on the sign , get up, fall again continually. At this point a gentleman walks past and tuts very loudly at me and the kids. I manage to pull Zach away, and get to the tills. Zach ain't happy because I've taken him away from his fun so he starts flapping, Zav is mad because he wants chocolates and I say no, and Zi has managed to pick up a pack of sweets opened it and started eating them!!!!!
Very very wound up at this point, we are at the checkout next to the tutting gentleman. Zach is chanting tree fu tom phrases and doing all the moves to go with it, Zavi is now flapping, and humming quite loudly and Zi is covering his ears and rocking.
The tutting gentleman turns and says to me 'shut your kids up' I just ignore him. He goes on to say 'look at you, you can't even control one child, and you went on to have more your pathetic' my blood is boiling but I calmly say back to him ' were you born your age, was you never a child?'
' I was but my mum knew how to control me, your a crap mother'
The volcanoes erupted in my head, and I just burst into tears. How dare you say I'm a crap mother, you don't know me. I'm a great mum, my sons have autism. I thought in my head but I couldn't get the words out I was sobbing so much. He continued to verbally assault me for about 5mins. Thankfully all the other people around me were all sticking up for me and telling him he was wrong. In the end a security guard asked him to leave the store.
I shouldn't have to keep my sons locked up at home with the fear of not knowing how they are going to behave. Yes the things that they do may not be considered normal. But nobody has the right to judge me because they don't act normal. I shouldn't have to walk around with a sign saying my children have autism.
I wish and pray everybody becomes more aware about autism and the effects it has on family's.
I now avoid going to the supermarket on busy days with the children, for their sake.
Knowing I have to do this, I add going to the supermarket to my boys daily routine in the kitchen, bedroom and add it to their now & next charts. I get them round the table and write a list of what we need together so they feel like they are involved.
Right we are ready, kids in the car - check, list written - check, change of clothes in the boot in case of an accident - check, their now & next charts - check.
I'm driving down the road and realise in trying to be so organised I've forgotten my bag with my purse!! I'm so silly
So I have to turn around, in doing so Zach starts rocking in his chair ( first signs of him about to have a meltdown) I'm getting flustered because I know what's about to happen. I tell him verbally mummy's forgotten her purse and have to go back. Zach doesn't understand - more so because when I am flustered I tend to speak really fast which most normal people don't understand me so there is no way my autistic son with very little understanding will comprehend what is going on.
He starts kicking the chair, and starts screaming in rhyme, Zav starts crying and Zi is pressing the window lock on & off. I feel like a volcano is about to erupt in my head but I calmly continue home to get my purse. We eventually get to the supermarket with 20mins of screaming in rhyme, crying, and pressing the window lock.
With all my soldiers holding onto Zans buggy we walk into the supermarket. I am stressed beyond belief but I keep my head focused on the mission at hand, so we can be in and out.
I glimpse a friend, she see's me with the kids and runs off down another aisle acting like she never saw us. I am a little confused, but then remember the last time I saw her was at her daughters birthday party that me and the kids were invited to. Zach followed her cat around and scared it half to death and then attempted to eat its food. Zav decided he wanted to show me their fish but because I was so busy talking he took the fish out the tank and literally brought it to me cupped in his hands. So I could understand why she wanted to pretend she didn't see me.
We get all the shopping and on the way to the tills we see a store cleaner, mopping up a spillage and places a yellow a board, to let people know the floor is wet and be careful . Zach always has the urge to fall on the sign , get up, fall again continually. At this point a gentleman walks past and tuts very loudly at me and the kids. I manage to pull Zach away, and get to the tills. Zach ain't happy because I've taken him away from his fun so he starts flapping, Zav is mad because he wants chocolates and I say no, and Zi has managed to pick up a pack of sweets opened it and started eating them!!!!!
Very very wound up at this point, we are at the checkout next to the tutting gentleman. Zach is chanting tree fu tom phrases and doing all the moves to go with it, Zavi is now flapping, and humming quite loudly and Zi is covering his ears and rocking.
The tutting gentleman turns and says to me 'shut your kids up' I just ignore him. He goes on to say 'look at you, you can't even control one child, and you went on to have more your pathetic' my blood is boiling but I calmly say back to him ' were you born your age, was you never a child?'
' I was but my mum knew how to control me, your a crap mother'
The volcanoes erupted in my head, and I just burst into tears. How dare you say I'm a crap mother, you don't know me. I'm a great mum, my sons have autism. I thought in my head but I couldn't get the words out I was sobbing so much. He continued to verbally assault me for about 5mins. Thankfully all the other people around me were all sticking up for me and telling him he was wrong. In the end a security guard asked him to leave the store.
I shouldn't have to keep my sons locked up at home with the fear of not knowing how they are going to behave. Yes the things that they do may not be considered normal. But nobody has the right to judge me because they don't act normal. I shouldn't have to walk around with a sign saying my children have autism.
I wish and pray everybody becomes more aware about autism and the effects it has on family's.
I now avoid going to the supermarket on busy days with the children, for their sake.
Friday 4 July 2014
16th June 2010, 7th December 2011 and 25th October 2012. These dates will stay with me forever, They are not my children's dates of birth. They are the dates my sons got their Autism diagnosis.
Where do I start, who am I?
My name is Chantelle I am a mother to four amazing children three boys 7, 5, 3 and one daughter 5months.
Before having my children I originally trained to be an actor but ended up working in the financial industry (mortgages) up until I had my first son.
My first son Zach was born in 2007, and like any first time mum I was meticulous in following all the rules and guidelines of what you are suppose to do. I went to an array of play groups, and talked with all the mums. Soon after having my first I had my second son Zav in 2008. I continued on the play group scene with both my boys.
It was at one of my favourite play groups that one of the workers approached me and offered me some extra support. Initially I thought it was because I was a mum with two boys under 2yrs and they thought I was struggling. No- they had picked up signs in my first son Zach may not be developing properly. A short while later I was told to go to a speech & language drop in session at a local clinic.
At this point Zach was 2 had no language and no understanding. The speech & language therapist spent 30 minutes trying to talk and engage with him but she had no joy. She said he was very delayed and will refer him to see a Paediatrician. Luckily it only took 3 weeks to get that appointment. Which was to be the first of many!!!
The appointment date came, the Dr was very nice and informative. She said that she feels that he has
all the signs pointing to Autism but cant officially diagnose him yet.
I left the appointment confused, annoyed and lost. Up until that point all I knew of autism was Dustin Hoffman character in the film Rain man, my son was nothing like him. I remember calling my sister straight after to tell her what the Dr said. As much as I love my sister she wasn't the right person at
the time to talk to, feeling the way I did. When I said to her the Dr thinks that he has Autism her response was crying down the phone and kept saying sorry, and they must be wrong. It's like she had been told he was about to die.
I had to wait nearly 15 months for Zach to get an assessment appointment. Within that time I had researched autism massively, and found a local nursery for Zach to attend. I was also pregnant with my 3rd son.
When my Zach started nursery, it was very clear to them that he was autistic. They were extremely
helpful, filling out caf forms getting extra funding to support him and early years intervention team
were involved. So when the official diagnosis came it wasn't a shock, we were ready.
With Zach in nursery, and pregnant with my 3rd son Zi. I continued going play groups with Zav, like before the staff picked up on signs of him having delays and referred him to see a Speech &
language therapist and then a paediatrician. It felt like de-ja-vu, going through the process for a second time.
During the time Zav was going through assessment for diagnosis, all the staff at my Zachs nursery
and all the proffesionals working with him told me I need to send him to a special school, as he
would not cope in a mainstream school. To do that I would need a statement of education for him.
Zach was 4 had no language, and was never expected too. But I was adamant and didn't want to just
put him in a special school without giving other options a try. The statementing process was
very very stressfull. I pushed and pushed and managed to get it. I also managed to get him a place into a resource base specially for children with autism, which is located in a mainstream school. To date: it was the best thing I ever did.
So here I am with two diagnosed little boys Zach 4yrs and Zav 3yrs, and Zi 1yrs and I'm pregnant with son # 4.
Zach was at school, Zav was at nursery and Zi and me going play group.
At my 12wk scan for my 4th son, they picked up on a problem. They believed he had a cleft palette, they could not confirm it so told me to come back at 16wks to scan again. I was a little upset but I have 2 autistic sons so one with a cleft palette which can be fixed isn't a problem.
During this time my boys Dr advised me that I need to get a blue badge as both Zach & Zav have no sense of danger and run into the road regularly. I applied for mobility with DLA, got turned down twice so I requested to go to tribunal. I'm told it can take months for a date to come through.
I go to my 16 week scan for baby 4, they say they can't see anything and to come back at 20wk scan- I was relived and excited.
I got the date for tribunal 22nd May 2012- I was looking forward to have my say, but was a little
worried as I would be quite huge with the pregnancy. My sister says she will come with me.
The date for my 20wk scan comes, I was actually 23wks at this stage as they didn't have any
appointments earlier. I was on my own as I had planned to go straight to my friends after. I figured I had done this a number of times before I would be fine - How wrong was I !!!!
I got on the bed and they started scanning, after 2 minutes of scanning then room went quiet. There
was 2 women in the room scanning. One of them left the room and returned with another person who took over. I didn't know what was going on but felt there was something wrong. I started crying, then shouted 'what is going on'. They explained to me they need to confirm everything before they tell me. What seemed like 10hrs, I got asked to sit up because they wanted to talk to me. When I did there was 8 people in the room. Who I found out later included a bereavement midwife, a consultant dr in foetal cardiology and a professor in medical genetics.
They told me my son had agnathia. In lay mans term, he didn't develop a Jaw bone, so although every other part of him was fine there was no way he would survive outside if me because he wouldn't be able to suck swallow. I was told he would probably die inside me. At 23 weeks pregnant I could feel him inside me move and I had already named him.
When I got to my car I cried like I had never cried before. It must be me, what have I done wrong to anybody, what kind of God would give me 2 autistic sons and make me have a child that didn't
develop a jawbone. Why me?
I didn't want the boys to see me upset so I composed myself before I went home.
I had to see my consultant the following day, because of the outcome of the scan. When I got to his
office he asked if he could do a scan. During the scan he confirmed my little mans heart had stopped beating and died. The original plan was to have a c section, so when my consultant said he had booked me in to deliver him in 2 days later I was confused. Because he was so big I had to be induced and deliver him.
On 22nd April 2012 I delivered my 4th son Zayne, after 10hrs of labour. 2 days before his big brother Zachs 5th birthday.
Tribunal date came, I was obviously a complete mess but I had to do it. I spent 1hour answering questions from the judge about Zach. Thankfully Zach was awarded High Rate mobility. The judge apologised and said I shouldn't have had to come, also noted that Zach wasn't my only autistic child.
So 6 mths and 2 days after meeting and saying goodbye to Zayne, Zi was diagnosed with autism. It had become like a conveyor belt act. Because I had been here before I knew I had to try and be positive, and get all the available help for Zi. He started nursery shortly after. I truly believe in early intervention is the key. Zi has made so much improvements.
Zav was due to start school soon, and again I knew he wasn't going to cope with mainstream school. So I started the statement process. As I was familier with the process I didn't expect any problems.
Well they turned Zav down, I appealed it went to see a specialised solicitor and put papers together to go to tribunal.
2 days before tribunal I got a call from the local authority, asking if I wanted to be part of the pathfinder and Zav go through the new process of the EHC plan. If I agreed I would not go ahead with the tribunal.
Against the recommendations of my solicitor I did go ahead with it and am glad I did.
Zav got the plan and a place in a resource base for autistic children, in a mainstream school. (Not the same school as his brother, a different one)
I have gone on to have baby # 5, who is a girl Zan. If she turns out to have autism, that's not a problem.
My children are my world, and truly believe God only gives you what you can handle.
I can handle 3 autistic boys, 1angel baby, and a little girl.
I believe every parent with an autistic child needs a voice to help them get what their child requires.
My sons are going to be a credit to this world.
Yes it's hard work, no I wouldn't change my boys if I could. My house is full of noise & broken tvs but I love it. It's my job to be the best mum to all of my children.
I hope you enjoy my blogs
Where do I start, who am I?
My name is Chantelle I am a mother to four amazing children three boys 7, 5, 3 and one daughter 5months.
Before having my children I originally trained to be an actor but ended up working in the financial industry (mortgages) up until I had my first son.
My first son Zach was born in 2007, and like any first time mum I was meticulous in following all the rules and guidelines of what you are suppose to do. I went to an array of play groups, and talked with all the mums. Soon after having my first I had my second son Zav in 2008. I continued on the play group scene with both my boys.
It was at one of my favourite play groups that one of the workers approached me and offered me some extra support. Initially I thought it was because I was a mum with two boys under 2yrs and they thought I was struggling. No- they had picked up signs in my first son Zach may not be developing properly. A short while later I was told to go to a speech & language drop in session at a local clinic.
At this point Zach was 2 had no language and no understanding. The speech & language therapist spent 30 minutes trying to talk and engage with him but she had no joy. She said he was very delayed and will refer him to see a Paediatrician. Luckily it only took 3 weeks to get that appointment. Which was to be the first of many!!!
The appointment date came, the Dr was very nice and informative. She said that she feels that he has
all the signs pointing to Autism but cant officially diagnose him yet.
I left the appointment confused, annoyed and lost. Up until that point all I knew of autism was Dustin Hoffman character in the film Rain man, my son was nothing like him. I remember calling my sister straight after to tell her what the Dr said. As much as I love my sister she wasn't the right person at
the time to talk to, feeling the way I did. When I said to her the Dr thinks that he has Autism her response was crying down the phone and kept saying sorry, and they must be wrong. It's like she had been told he was about to die.
I had to wait nearly 15 months for Zach to get an assessment appointment. Within that time I had researched autism massively, and found a local nursery for Zach to attend. I was also pregnant with my 3rd son.
When my Zach started nursery, it was very clear to them that he was autistic. They were extremely
helpful, filling out caf forms getting extra funding to support him and early years intervention team
were involved. So when the official diagnosis came it wasn't a shock, we were ready.
With Zach in nursery, and pregnant with my 3rd son Zi. I continued going play groups with Zav, like before the staff picked up on signs of him having delays and referred him to see a Speech &
language therapist and then a paediatrician. It felt like de-ja-vu, going through the process for a second time.
During the time Zav was going through assessment for diagnosis, all the staff at my Zachs nursery
and all the proffesionals working with him told me I need to send him to a special school, as he
would not cope in a mainstream school. To do that I would need a statement of education for him.
Zach was 4 had no language, and was never expected too. But I was adamant and didn't want to just
put him in a special school without giving other options a try. The statementing process was
very very stressfull. I pushed and pushed and managed to get it. I also managed to get him a place into a resource base specially for children with autism, which is located in a mainstream school. To date: it was the best thing I ever did.
So here I am with two diagnosed little boys Zach 4yrs and Zav 3yrs, and Zi 1yrs and I'm pregnant with son # 4.
Zach was at school, Zav was at nursery and Zi and me going play group.
At my 12wk scan for my 4th son, they picked up on a problem. They believed he had a cleft palette, they could not confirm it so told me to come back at 16wks to scan again. I was a little upset but I have 2 autistic sons so one with a cleft palette which can be fixed isn't a problem.
During this time my boys Dr advised me that I need to get a blue badge as both Zach & Zav have no sense of danger and run into the road regularly. I applied for mobility with DLA, got turned down twice so I requested to go to tribunal. I'm told it can take months for a date to come through.
I go to my 16 week scan for baby 4, they say they can't see anything and to come back at 20wk scan- I was relived and excited.
I got the date for tribunal 22nd May 2012- I was looking forward to have my say, but was a little
worried as I would be quite huge with the pregnancy. My sister says she will come with me.
The date for my 20wk scan comes, I was actually 23wks at this stage as they didn't have any
appointments earlier. I was on my own as I had planned to go straight to my friends after. I figured I had done this a number of times before I would be fine - How wrong was I !!!!
I got on the bed and they started scanning, after 2 minutes of scanning then room went quiet. There
was 2 women in the room scanning. One of them left the room and returned with another person who took over. I didn't know what was going on but felt there was something wrong. I started crying, then shouted 'what is going on'. They explained to me they need to confirm everything before they tell me. What seemed like 10hrs, I got asked to sit up because they wanted to talk to me. When I did there was 8 people in the room. Who I found out later included a bereavement midwife, a consultant dr in foetal cardiology and a professor in medical genetics.
They told me my son had agnathia. In lay mans term, he didn't develop a Jaw bone, so although every other part of him was fine there was no way he would survive outside if me because he wouldn't be able to suck swallow. I was told he would probably die inside me. At 23 weeks pregnant I could feel him inside me move and I had already named him.
When I got to my car I cried like I had never cried before. It must be me, what have I done wrong to anybody, what kind of God would give me 2 autistic sons and make me have a child that didn't
develop a jawbone. Why me?
I didn't want the boys to see me upset so I composed myself before I went home.
I had to see my consultant the following day, because of the outcome of the scan. When I got to his
office he asked if he could do a scan. During the scan he confirmed my little mans heart had stopped beating and died. The original plan was to have a c section, so when my consultant said he had booked me in to deliver him in 2 days later I was confused. Because he was so big I had to be induced and deliver him.
On 22nd April 2012 I delivered my 4th son Zayne, after 10hrs of labour. 2 days before his big brother Zachs 5th birthday.
Tribunal date came, I was obviously a complete mess but I had to do it. I spent 1hour answering questions from the judge about Zach. Thankfully Zach was awarded High Rate mobility. The judge apologised and said I shouldn't have had to come, also noted that Zach wasn't my only autistic child.
So 6 mths and 2 days after meeting and saying goodbye to Zayne, Zi was diagnosed with autism. It had become like a conveyor belt act. Because I had been here before I knew I had to try and be positive, and get all the available help for Zi. He started nursery shortly after. I truly believe in early intervention is the key. Zi has made so much improvements.
Zav was due to start school soon, and again I knew he wasn't going to cope with mainstream school. So I started the statement process. As I was familier with the process I didn't expect any problems.
Well they turned Zav down, I appealed it went to see a specialised solicitor and put papers together to go to tribunal.
2 days before tribunal I got a call from the local authority, asking if I wanted to be part of the pathfinder and Zav go through the new process of the EHC plan. If I agreed I would not go ahead with the tribunal.
Against the recommendations of my solicitor I did go ahead with it and am glad I did.
Zav got the plan and a place in a resource base for autistic children, in a mainstream school. (Not the same school as his brother, a different one)
I have gone on to have baby # 5, who is a girl Zan. If she turns out to have autism, that's not a problem.
My children are my world, and truly believe God only gives you what you can handle.
I can handle 3 autistic boys, 1angel baby, and a little girl.
I believe every parent with an autistic child needs a voice to help them get what their child requires.
My sons are going to be a credit to this world.
Yes it's hard work, no I wouldn't change my boys if I could. My house is full of noise & broken tvs but I love it. It's my job to be the best mum to all of my children.
I hope you enjoy my blogs
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