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Hi im looking for advice and support
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Jennyh Offline
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Posts: 37
Joined: Jun 2014
#1
Hi im looking for advice and support

Hi im Jenny a mum to Jayden who is 6. He has a twin sister and they were born at 31 weeks. When he was born he had lots of problems being 9 weeks premature, including 4-5 days where the whole nicu had to be as dark as poss and there were signs everywhere saying that they had to be quiet as he didn't like it. The first year of his life he did everything at least a month after his twin although by 15 months when they both started walking he was only a week behind her. He has always been clumsey and at 3 i looked into it a bit more i thought he had dyspraxia he was constantly falling over his own feet bumping into things etc. I did get him to a cdc who decided he didnt have it. Fast forward 3 years when i get spoken to by his teacher who askes me if i have ever heard of dyspraxia and they think he may have it. So currently we are trying to get him help with that. While looking more into dyspraxia i come across SPD. Jayden could be a poster boy. A few things we have on a daily basis, He doesnt like being tickled he never has done after 5 seconds max he is screraming it hurts. Cutting his nails is a task i hate he pulls away yelling it hurts. We have 20 minute temper tantrums because his sock seams are 'wrong' i now turn them all inside out. He is a very messy eater he will smear it over himself. Touching is on his terms he doesnt like being rubbed and if he doesn't want to be touched will pull away. He is like this both at home and at school. He blanks you to the point i end up yelling just to get a reaction. He touches the ground every few minutes - this drives me crazy! Every thing he touches has to touch his lips. The other day we went into the school hall he couldnt cope with the noise (it was very loud) he just stood there pushing his book bag to the ground and up as a coping mechanism. He has no sense of other peoples personal space and often will completely invade it. He is loud all the time. He has become overly agressive at times. These are just the things off the top of my head. He also has one leg that is longer then the other dyslexia. He has/ is having a groth spurt he is 126 cm tall at 6. I just feel so let down by the system at the moment the drs are saying the school nurse needs to help the school nurses say it should be the dr. Me and his teacher have done a CAF report to try to generate help. I have a meeting at the school with them his teacher the head and the school nurse on 2nd of June. I hope at least someone can help i feel like im drowning on it all at the moment Sad

Thanks for reading my essay

Jenny xxx

He also can not sit still something has to be moving
(This post was last modified: 06-09-2014, 04:23 PM by Jennyh.)
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Jamse37 Offline
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Posts: 36
Joined: Jun 2014
#2
RE: Hi im looking for advice and support

Getting help seems to be the biggest problem. I don't know where you are but where I am in uk they won't help "diagnose" until six years old.
The time when help is most needed and be of most benificial there is no help
I feel your pain and frustration and good luck. Just keep pushing the docs nurses health visitors whoever you need to just never take no for an answer.
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Jennyh Offline
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Posts: 37
Joined: Jun 2014
#3
RE: Hi im looking for advice and support

(06-25-2014, 03:34 AM)Jamse37 Wrote:  Getting help seems to be the biggest problem. I don't know where you are but where I am in uk they won't help "diagnose" until six years old.
The time when help is most needed and be of most benificial there is no help
I feel your pain and frustration and good luck. Just keep pushing the docs nurses health visitors whoever you need to just never take no for an answer.


Hi thank you for replying. Im in the uk too. It is extremely frustrating but luckly next week I have a meeting at the school with the headteacher, class teacher, school nurse, and the CAF team so we can start going somewhere. His teacher is backing the spd 100% she is in complete agreement so at least were not alone in it.
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Jamse37 Offline
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Posts: 36
Joined: Jun 2014
#4
RE: Hi im looking for advice and support

Replying also makes you feel you are not alone. I have found a few sites (American) but no one seems to reply to anything
So glad you have support
My biggest fear for my little one when she starts school is bullies. If they realise she freaks and has to strip off if her clothes get wet for example bullies will thrive on this.
I am so glad you are going in the right direction.
I am lucky as I am a very chilled person and take whatever life throws at me in my stride. But my wife really struggles with how she is.

It's easy to say but if he needs to feel the ground/floor just go with it and let him do it for as long as needs
Best of luck with all.
(This post was last modified: 06-25-2014, 01:17 PM by Jamse37.)
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Jennyh Offline
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Posts: 37
Joined: Jun 2014
#5
RE: Hi im looking for advice and support

How old is your little one? Im very lucky at the moment because jayden has a lovely best friend his twin and his brother at school with him. He also has quite a few friends but I do worry aswell because he has been getting worse lately. Im trying my best to ignore thr floor touching but it is hard.

I find it very frustrating too espcially seeing how my other 2 are we did a hour tickling playing the other day jayden either sat out or was instantly too rough. His weighted blanket arrived today im hoping it makes a difference at home, his frustration erupts into anger. Were hoping this grounds him.

What are the main points your little one has?
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Sorry for late replys ive not checked but I will check again today Smile
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Jamse37 Offline
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Posts: 36
Joined: Jun 2014
#6
RE: Hi im looking for advice and support

Hi
My little one is three end if September.
I knew when she was just a few hours old something was not right.
I haven't found anything other than skin to skin contact that comforts her and that's only with me. No kisses ever allowed. Baths make her hyper as it awakens all her nerve endings. Nothing helps with sleep Doesn't eat. And I mean doesn't eat not like some people's o my darling never eats. She lives on milk and occasional tiny amount of pasta or pizza. She is perfectly healthy though. Very tall photographic memory all the norm you would expect
The problem at the moment is she won't leave the house is very anxious at just the mention of it.
We will get there though. It will take as long as it takes (and like yourself no doubt) will do whatever it takes to make her life easier
Sorry just re read your post.
Main points
No sleep
No food
No pain feeling
No comfort
No kisses
Loves stones
Wont wear anything on feet
Wont have any covers or clothes on at bedtime (joke word)
Wind hurts her
Can't be wet
Love totally love swings

The list goes on and on.
Love her to bits!
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Jennyh Offline
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Posts: 37
Joined: Jun 2014
#7
RE: Hi im looking for advice and support

My friends little girl is very simular to your little girl. Jay has the opposite one. He feels pain more doesnt care about being dirty seeks out movement cant sit still we used to be up at 4 with him but as he got older he sleeps till 6/ 6.30 pity my other son wakes anytime from 5 but I can't complain about that. The blanket is 50/50 atthe moment he likes the weight but is thermal so too hot. He is complaining its bumpy then telling us he is laying on it. He is a sensory seeker.
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Jamse37 Offline
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Posts: 36
Joined: Jun 2014
#8
RE: Hi im looking for advice and support

Apparently you posted this at three in the morning. Ha.
Its so amazing really all the people in the world and for some reason a few have their brain hard wired differently. I Myself believe its a lack of oxygen at a very pungent age ( my little one was born dead due to professionals messing up big time) but these professionals also like to convince people it's hereditary so they are not held responsible
You get loads of sleep. Lucky you. My little one went off last night at half eleven I was up with her since half two in the morning and she is currently still going strong
It's nice to chat to someone who knows exactly how it is.
Thank you
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Jennyh Offline
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Posts: 37
Joined: Jun 2014
#9
RE: Hi im looking for advice and support

Nope was after 8pm lol!

Jayden and amy had in uterine groth retardation. At 27 weeks amy slowed growing at 29 weeks I had to have doppler scans untill I saw a specialist. I should have gathered the seriousness when i was rushed to see scbu and steroid injections. I saw him at 31+1 after the scan his first words were "there ok for now" you can imagine the relief in that second followed by but I want them out by Monday it was thursday I had the call from the hospital by the time I got home. I had to be in that night they were here next day. Jaydens first sensory problems appeared when icbu had signs up saying he couldnt handle light so lights low and voices low. At the time though that was the least of his problems. He was on a ventilator had a hole in his lung heart murmur needed a long line had his belly button chord removed to put it in was then back on cpap he then got the worse sore bum scbu ever saw got icolated because they thought he had mrsa . There was more I just cant think right now. His twin sister though was on cpap (which is air ) for 24 hours she is completely fine.

And the biggest sign should have been we couldn't hold him for a full week he was born a Friday I held him for the first time the next friday
(This post was last modified: 06-26-2014, 06:03 PM by Jennyh.)
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Jamse37 Offline
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Posts: 36
Joined: Jun 2014
#10
RE: Hi im looking for advice and support

Wow! You really went through it didnt you
It's stories like this that make your little ones even more special
It must have been absolute hell for you especially not being able to hold him for a week
My wife is 38 weeks and her biggest fear I think is the way I am going to be towards the midwifes after last time. We are hoping that new baby is really going to help our little girl especially that when they go to sleep they do wake up again so it is ok.
I guess it's only me and you that post on this site then ?
Does Jayden like playing with gloop/rice/ play doh? My little one love them but again the stimulation makes her hyper but hey what does that matter?
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