Groups > Special needs

Public Group active 2 months ago

Get some support and share advice here about your baby’s special needs.

Hello (6 posts)

  • Avatar Image Janey.1971 said 2 years, 8 months ago:

    Hi there. First of all, I would just like to say what a beautiful little boy he is on this forum’s profile :)

    My name is Jane, 41, and I have 4 children plus 8 angels and am currently ttc number 5. My children are Amy 18, Joshua 11, Luna-Mae 3 & Elliot 1.

    Joshua has a diagnosis of Autism, GDD, OCD & ADHD and Luna-Mae has a diagnosis of Autism, possible Fragile X, OCD.

    Joshua is statemented and attends a mainstream high school where is he struggling so much and I’ve had to go to the head of SENCAN in my area and get them involved as I’ve had enough. I’m at the school 2-3 times per week because of the incidents occurring. The school themselves have admitted that he cannot access the curriculum and that they don’t have the facilities to deal with him. I want him moved to a special school where they can deal with him, but its cutting through the red tape once again.

    With Luna-Mae its a different story. She was diagnosed at 2.5 years old and currently attends a special school nursery plus we are in the process of getting her statement ready for September where she will start full-time. She is getting so much more help than my son did and has come on in leaps and bounds whereas my son is 4-5 years behind his friends :( Luna-Mae also has delayed echolalia and has hypotonia/lower limb joint laxity too which she has just been given some Piedro boots to help her with her mobility.

    My son, Elliot, 1, is already showing signs like both Luna-Mae & Joshua did when they were this age but we are just waiting for a while to see how he progresses before taking it any further.

    Anyway, I thought I would introduce myself and looking forward to getting to know you all.

    My Ovulation Chart

    Me : Jane 42, DH : Chris 49 plus 4 children: Amy(19),Joshua(13),Luna-Mae(5),Elliot(2)

    Sadly, also 11 beautiful baby angels up in heaven together, but now being looked after by my beloved mum, gone but never ever forgotten. RIP my little ones - till we meet again (1992-2013)

    pregnancy week by week

  • Avatar Image Rainbow5 said 2 years, 8 months ago:

    Hi Jane

    Welcome to the forum :D

    I have 3 children, a 14 yr old son with ASD. He has also recently been diagnosed with Tourettes, episodic paroxysmal anxiety and at risk of agraphobia and OCD. He is in mainstream, no statement and has just started to come through a very bleak phase where is lesson attendance dropped to 60% because of stress/ anxiety.

    I also have a neuro typical 12 yr old dd and 10 yr old son. :)

    I can totally understand where you are coming from with the difficulties Joshua is experiencing. I really think that children with ASD are not properly catered for in the education system and has just cruising until they are out of the system. THeir needs are not being met, just managed. :(

    So pleased that Luna-Mae is getting a better start in life. :)

    Look forward to chatting more on this forum. :D

    Kerry xx

    Moderator

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  • Avatar Image Janey.1971 said 2 years, 8 months ago:

    Hi Kerry and thank you for the reply. It’s so difficult isn’t it trying to get a decent education for our children. Luna-Mae was very lucky as she got an early diagnosis plus intervention from the pre-school specialists which has really helped.

    With Joshua, I fought 2 years to get him statemented and eventually had to get my local MP involved. The Educational Psychologist at my sons’ primary school said his problems were due to the fact that I was a single parent at the time. Fuming didn’t even cut it. He hadn’t even met my son at that point. From then on, I fought for everything. My MP was great and did loads for me, sending letters etc to the LEA. It was going to tribunal until the night before where they called me and accepted that he was going to be given a statement lol.

    A friend of mine has a son who is 12 and he has major anxiety attacks which has reflected on his school attendance plus has a diagnosis of autism, but the school are blaming it on him for not getting him to school. He is in and out of hospital for his anxiety and its just not fair. She’s trying to get him a statement which I’m helping her with.

    At the end of the day, it’s not fair what they put our kids through. They are entitled to a decent education just the same as “normal” children (ps. I hate that word normal).

    xxx

    My Ovulation Chart

    Me : Jane 42, DH : Chris 49 plus 4 children: Amy(19),Joshua(13),Luna-Mae(5),Elliot(2)

    Sadly, also 11 beautiful baby angels up in heaven together, but now being looked after by my beloved mum, gone but never ever forgotten. RIP my little ones - till we meet again (1992-2013)

    pregnancy week by week

  • Avatar Image elvy said 2 years, 8 months ago:

    Hi Everyone,

    Im not a newbie but havent posted here for ages. **waves to Jane from TFAB forum :) **
    My son is now nearly 5 yrs old and was diagnosed with ASD a month after his third birthday. We are extremely lucky in that he got his statement in nursery and gets excellent 1:1 support at a mainstream school.
    I feel for the poor parents and children who need support and are denied it, and then have to fight to get it, its so wrong.
    Even though Im ttc my 2nd, I do worry if we were sucessful, the chances of the baby also having additional needs or asd like my ds. Not because of me or dh, but I would worry like I do now about them struggling as they grow older. However, I think my ds would benefit so much from having a brother or sister. He is such an affectionate child and already very close to my 18 month old niece. We went through genetic testing we were offered and the results came back showing no link between myself and dh to my sons condition. I did have a long labour and traumatic birth with him, then at 8 months he developed a nasty bacterial infection( which im sure, was part of the cause of his asd). After the infection, he had over a year of high unexplained fevers(up to 41+) every 2 weeks before finally being diagnosed with glue ear and had grommets and an adenoidectomy, also around his third birthday.He is now much stronger and happier, and gradually beginning to talk in sentences and his understanding is coming along brilliantly.

  • Avatar Image Helen1999 said 2 years, 8 months ago:

    Hi Janey! Think we’ve met already!!

    Helen x

  • Avatar Image Rainbow5 said 2 years, 8 months ago:

    Hi levy.

    It was good to read about your experiences. So pleased your son has a statement. I wish my son had been diagnosed at a young age and a statement. They do take a lot of the uncertainly from the educational system.

    Great to have another person to chat to on thd forum.

    :-)

    Kerry xx

    Moderator

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