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Hello, Newbie here!

2Tired

I'm 2Tired. My name is quite apt. I am a Lone Parent with 4 children.

My DD is almost 15yo. She has 'Autistic traits' (No formal diagnosis, but she has PDA IMO, I would eat my hat if not), GDD, Dyspraxia, dyslexia, Dyscalculia, APD, Hearing issues, LD's, Hypermobility Syndrome, SALT issues and cardiac problems (two leaky heart valves that need replacing when she is 16). She is in MS, on SA+, have been unable to get her statemented despite many attempts, my LA refuses to even assess, despite her being academically at a Y5/Y6 level in Y10...

My almost 11yo DS1 is currently having Aspergers mooted by the Primary school. They are calling in the EP to assess him to try to help get a referral to CAHMS. It wouldn't surprise me tbh, if he got a diagnosis. He was measured as having an IQ of 132 at 8yo, yet has absolutely NO social skills, is VERY literal, can't organise himself for toffee, was incerdibly precocious with his speech, very obsessive about certain things, many other things that mean I would not be surprised if he got a dx.

My 9yo DS2 has 'Autistic traits' (no formal assessment, but report from SALT, OT, Physio ALL mention his Autistic traits), GDD, Dyspraxia, I also believe dyslexia but school refuse to assess, APD, Hearing issues, Hypermobility syndrome, he has orthotic problems, SALT difficulties, Kyphosis, and chronic brittle asthma.

My 24mo DS3 has Hyperactivity 'with a high probability of ADHD', He is being asseesed for Autism in May (FINALLY I get one of them actually assessed!!!), he has Hypermobility syndrome, orthotic issues, SALT difficulties, and multiple, sever life threatening allergies.

He has had Microarray chromosomal testing done in July last year that we are waiting for the results of (I've been told probably April!), because the developmental Paed believes he has at LEAST one chromosomal deletion or duplication, given our family history.

DS3 is anaphylactic to : Dairy, Tree nuts, Peanuts, chickpeas, lentils, pineapple, kiwi and papaya. He is also allergic to Soy, strawberries and raspberries.

My DS2 and DS3 have a different father to my eldest two DC's. DS2 & DS3's dad was dxd with Autism when he was 12yo and attended an SN school. He also has dyspraxia.

My own Brother was dxd with Aspergers when he was 7yo, and he also has sensory integration disorder, Hypermobility syndrome, APD, and Dyspraxia.

I am ALSO disabled! I have epilepsy that is not fully controlled by my medication, hypermobility syndrome and arthritis that has developed from the HMS.

Hence the username 2Tired!!

Well, this is my family, and I'm glad I have found this forum.

Parents

  • Carer's assessment? We are having a TAC meeting about my toddler, on the back of the (latest of many i've filled in over the years) CAF form the HV did later this month, but i've never had anything specifically called a 'Carer's assessment'?

    I personally fall JUST short of Adult Social Care's criteria for help with my own disabilities. And in the past, the CWD team has refused to help me because I had CP involvement when DD was born, as I was under 18, and I was still in kinship care myself. In our area, if you have had CP involvement (even if it ended over 10 years ago, like in my case!), then the CWD team say they CAN'T help.

    They then pass you over to the CP team, who come out, say they have no issues with how you are looking after your DC's, and then THEY close the case. Only for you to reach crisis 6-12 months fdown the line, and start the whole merry-go-round again.

    And STILL end up with no help, no support, no respite...

    I live in Essex. It happens a LOT here.

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  • Carer's assessment? We are having a TAC meeting about my toddler, on the back of the (latest of many i've filled in over the years) CAF form the HV did later this month, but i've never had anything specifically called a 'Carer's assessment'?

    I personally fall JUST short of Adult Social Care's criteria for help with my own disabilities. And in the past, the CWD team has refused to help me because I had CP involvement when DD was born, as I was under 18, and I was still in kinship care myself. In our area, if you have had CP involvement (even if it ended over 10 years ago, like in my case!), then the CWD team say they CAN'T help.

    They then pass you over to the CP team, who come out, say they have no issues with how you are looking after your DC's, and then THEY close the case. Only for you to reach crisis 6-12 months fdown the line, and start the whole merry-go-round again.

    And STILL end up with no help, no support, no respite...

    I live in Essex. It happens a LOT here.

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