parents with special needs children to rant !

[Emma2345]

Hi guys so I’ve started this thread so that us parents of special needs children don’t feel alone no matter what this is (ASD ADHD SWAN SYNDROME ANGELMAN SYNDROME RESPITARY ) Any special needs or disability and so anytime day or night anyone is here to listen and understand as well as communicate with one another because I no sometimes us parents we feel so overwhelmed and we feel like like we’re at rock bottom and don’t no if we’re doing right for wrong and sometimes we feel like we can not cope ❤️💙

Thank you so much!
Sounds similar to when he was seen by OT. They had him doing little tasks he struggles with his fine motor skills pretty bad. Hes just turned 7....struggles to write properly, struggles with buttons/zips cant use knife/fork. Hes just started using a laptop at school for when he has alot of writing to do when doing english. School mentioned an ASD and a dyspraxia assessment.

Thankyou.

School refered him and was told to expect a 39week wait...so really pleased thats its sooner than we thought! Hes already seen an OT as he struggles with his fine motor skills. Hes not long turned 7.

@BrumToTheRescue thanks i will have a look at those specialists.

@Ponche the EP assessing dd wants £200 before the consultation. The other two did not want payment to wait. However they are aware I will go elsewhere if something comes up sooner.

@BrumToTheRescue @Wednesdayy123 thanks for letting me know!

I'm basically same boat it's so draining you feel like your a failure and don't see a light at the end of tunnel, you dernt go places as you no there's going to be a meltdown but your sick of been in the house going round in circles, there's no help around and never get a brake. My partner comes home Fridays and it's even worse than during week routines out the window house more hectic and wish for Monday to come around to get the routine back. I can't say if it will get easier as they age as my older children haven't had any problems so all new to me. I'm so drained constantly.. feels like I live my days walking on eggshells around my son to avoid meltdowns.. will it ever get better I don't he seems to be getting worse as the days go by even at school now aswell 🤯

your welcome hun x

I have finally got alternative provision for ds. However it's not suitable (3hours of online tuition) he struggles to sit for 5 minutes without movement. The movement breaks will be longer than the time he will engage. We are going to give it a go, as evidence really that its not suitable. Has anyone had ap could you give me some ideas of what to ask for? I suggested forest school multiple times but apparently we were to far through the school year and no places. I had been asking since last year so that was a poor excuse.

Put on wrong thread.

Its like your describing my life hun im so glad someone else undertand how i feel, my daughter is getting worse day by day too. She starts reception in September and im absolutely dreading it i can just about get her to do 2 days at nursery even then she makes our home life unbearable. I just cant imagine how its going to be when i force her to go to school everyday. But ive been told by the health visitor that i have to force her to go so that she can get help through the school too, it feels like a never ending losing battle x

Oh its a nightmare and your not alone even though you think you might be if you ever need to talk or rant your welcome to send me a pm.. I'm new to all this but I'll work it lol.. my son used to run away I had to carry him to the classroom sometimes in his pj's and they would get him ready but that depends on school I guess, he's in year 1 now and still hates going to school but he goes he's got more support now and a 1 on 1 even though funding isn't accepted yet they have give him one anyway, hopefully she gets used to going it will be hard at first but she will settle in the end.. I used to ring see if he was okay and he was fine once I had went so hopefully you will be fine xx

Thank you I'll see if they can offer me any information that I've not picked up along the way. He as a sen plan and teacher as put in for 1 on 1 funding but head as said they will give him 1 on 1 straight away while they wait for funding as he's getting that bad, other than that he's been diagnosed with autism and school have sent a referral for adhd assessment. He's been signed of chams and everything else soons he got diagnosis so it's like they have give him a lable and shut the book. My other children have all been okay growing up so this is all new to me, I don't no what I should be asking for as alls I was given was a few leaflets his diagnosis and told he will get help in school, so yeah I'm a bit stuck with what I do now. He's a nightmare at home and at school. I just feel like I've been pushed aside and not given helpful information to help me cope and give him care he needs.

@Mamof2devils you should request an EHCNA. On their website, IPSEA has a model letter you can use. You can also request social care assessments. A carer’s assessment for you and an assessment of DS’s needs. Contact has model letters on their website you can use.

Wondering if anyone can help me and who you have got to prescribe your child something to help them sleep I’ve spoke to my GP twice about helping my children sleep my boy is 3 suspected ASD and does not sleep at all I’m lucky if I get between an hour of sleep a night with him and this is about 3/4 in the morning before he finally goes off and my girl who is 5 has extremely high traipse of ADHD and some traipse of asd (harder to detect in girls) my gp will not prescribe anything other then piriton which may make you drowsy 🤣🤣🤣😩 this does not even touch my kids at all and I’m really at a point now where I am mentally and physically drained they are both extremely violent and attack me barely sleep and up at the crack of dawn can not be left unsupervised excetra and I just need something to help them sleep at night skwl have wrote me letters and they still won’t prescribe nothing more and said that camhs will be able to help when assessed with sleeping but I’m looking at another 12-18 months plus for my boy and 24 months for my girl as she has only just been referred I’m literally running off 1-2 hours sleep a night I am praying one of you lovely people can point me in the right direction of someone that can actually help thankyou in advance x

It is normal for GPs not to prescribe sleep medication for children. Some won’t prescribe anything. Others will prescribe piriton or promethazine. You could request a referral to a sleep clinic or paeds. There will still be a wait, but in some areas it is quicker than CAMHS.

You could also request a home OT assessment to look if something like a safe space bed is necessary.

Can anyone else’s child bath by themselves / what I’m saying is they have their own baths or showers and will be happy !! Because with mine even if I bath my 3 children together or separately they will alll still end up in my bath Or shower when it is my turn it’s All so brain draining I literally can not have a minutes or second piece to do anything by myself especially,,, bath or shower time theyre like hi hello I’m here even if they halve had one before or after they will almost always end up in mine Xx