Here some suggested organisations that offer expert advice on SN.
ZOMBIE THREAD ALERT: This thread hasn't been posted on for a while.
Fuck fuck and FUCKITYFUCKITYFUCK!!
Got 21mo DS3's Paed report done on his speech delay/regression and his allergies.
Here are a few excerpts : "disruptive" "his attention span fluctuates, if he is interested in a particular activity he can concentrate for far longer than is age appropriate but in general he is very easily distracted and generally keeps moving from one activity to another and from one part of the room to another"
"He shows eye contact and some interaction with parents but does not interact appropriately with unfamiliar faces or make eye contact. In fact he actively avoids eye contact with unfamiliar people"
"XXXX's speech is delayed; he can hardly say one or two words. This is a clear regression from his one year check with the HV"
"Height could not be measured as XXXX would not stand still"
"Schedule of growing skills could not be performed properly as he was constantly fidgety and restless and could not be engaged in any of the various activities that are part of the Schedule of growing skills"
And in summation : "Regarding XXXX's Hyperactivity, there are gross concerns. Presently he is too young for assessment regarding ADHD but this needs to be kept in mind and perhaps he will need further assessment if there are still concerns."
He has ASD and ADHD, doesn't he?
Isn't two out of four that are already dxd with ASD/HFA ENOUGH??!!
I so so so so so wanted to be wrong. I have never wanted to be wrong so much in my life. But I'm not wrong, am I?
I wasn't even there about the hyperactivity, hasn't told anyone medical because I knew he was too young to be assessed. We were there about the speech and the allergies.
And if it is that obvious to the Paed, who had no idea that I had those concerns, then it is bleeding obvious, isn't it?
Plan if action?
1) Referral to CADU (Child Assessment and Development Unit) for assessment.
2) Referral to SALT - already have my first appointment despite the current 18mo waiting list (!)
3) Referral to Physio, in view of strong family history of Hypermobility, and although he is actively mobile and runs around, he can be very clumsy, as witnessed.
4) Section 332 notification has been made to Educational Psychologist
*5) Blood investigations including Full Blood Count, urea electrolytes, Liver enzymes, Serum CK, Blood Glucose, Iron profile, Thyroid profile, Plasma amino acids and chromosome studies for Fragile X syndrome
and Microarray. Urine will also be requested for amino acids and organic acids.*
6) XXXX will be reviewed in the CADU.
Wtf is number 4? Not come across a 'section 332 notification to the EP' before. And why an EP at 21mo? Especially in an area where you can't get an EP visit for a 14yo, or a 9yo for bloody love nor money?! New one on me. Any explanations?
And as for number 5, the only one that makes sense to me is testing for Fragile X. Which will come back negative, same as DD's test for it, and DS2's test for it. Can anyone explain the reasoning behind the rest of the things they want to test his blood and pee for?
And just to hold my hand.
He had his anaphylaxis allergies fully dxd on Wed by skin prickly tests on Wed too. Then this report through the door today.
Skin prickly tests, he went into anaphylaxis. From the skin prick tests. To CMP. And Nuts. And 'moderately' reacts (I.e. bad but stops short of ana) to soy. He's so bad that the local Paed allergist is washing his hands of him after just one appointment and sending him to the Eveline in St.Thomas's in London.
Because another hospital added to the 8 I visit already every year, about 50 visits a year between 3 of us currently, was JUST what I needed, right?!
I wanted to be fucking WRONG this time.
It sounds like the Paed is not letting anything go undetected. It also sounds like your Paed is doing a thorough investigation. We saw an EP at 2yrs and got an ASD dx at 3yrs old.
It's horrible to face your fears head on and I do understand as I've been there myself with all 4 of my dc.
We're here to hold your hand and support you.
It's usually ME holding people's hands! I've been there twice before, DD is 14 now, and was dxd HFA at 4yo, 10 years ago. DS2 is now 9yo and was dxd just after 3yo.
But bloody hell, isn't 2 enough for a disabled Lone Parent? How the hell am I meant to cope? I only got his full allergy diagnosis on Wednesday, am still trying to process the severity of that (having trouble with sorting preschool safely due to the sheer severity of his Cow's Milk Protein allergy, he goes into anaphylaxis from secondhand transfer even.), and now this.
I should be used to it. But it never gets any easier, does it?
Oh that's hard on you.
But agree, it sounds like they're being very, very thorough, which is good (isn't it?).
Re referral to Evelina hospital - that doesn't mean much other than the Evelina is the main children's hospital in London. My dd recently had her tonsils out there, when we are 5 mins away from Kings. Also referred to the allergy clinic there - it was great. Your local doc probably just thought the Evelina would have more specialist resources for children - doesn't mean the allergies themselves are more serious or different.
ASD doesn't jump out at me from your description - do you think he has it?
Sorry, you must feel hit by a train. We are all here to hold your hand.
It's the eye contact. And the stims. He flicks his thumb against his fingers. For hours. Plays quite happily crashing his cars for hours, but won't interact with you.
The ASD possibility was alluded to (mentioning the lack of eye contact and the speech regression) in the report briefly (though in more detail on the page about family history) but was spoken about more in the assessment.
I just wanted to be wrong. You know when you know deep down, but when it gets pointed out by the Paed when you went over unrelated (well, mostly) issues it makes you have to face up to it? Well that's today.
The ADHD I knew. Living off less than 4 hrs sleep in 24 for 21 months with a live wire who acts like they're on speed for the other 20 hrs a day is a giveaway. But I STILL wanted to be wrong.
I'm not in London. I'm over an hour away by train. My local Paed allergist said that he didn't have the experience to deal with multiple allergies as severe as DS3's. he said it was the most severe CMP allergy he has seen in 11 years of doing this job. I knew he had the allergy, though no actual test before, but it's getting worse. His reaction to a skin prick test was anaphylaxis. My local hospital have never had to give a Jext pen within 3 minutes of a skin prickly test before.
He has actually been on a totally dairy nut free diet since before he was weaned. He had his first anaphylaxis at 8 weeks old. He was ebf. I had eaten two squares of chocolate.
Nut allergy everyone seems aware that it can be that severe. Not so much for CMP allergy. And his CMP reaction was far greater than his nut reaction.
And now this. Talk about can the world stop to let me off this week. It started with 10yo DS1 having his appendix out on Sat morning, DS3 coming down with a tummy bug Sun night, his allergy tests Wed afternoon (and resultant anaphylaxis), me having a seizure on Thursday, then this report and DS2 coming down with the tummy bug today. All interspersed with DD having major meltdowns as routines aren't being followed due to all of the above, and being generally knackering because of it.
NOT a great week, all in all!!
I'm so sorry, you have so much on your plate. At least, small comfort, they are being very thorough. The Thomas's / guys team are great, IME, in effect you get two for the price of one.
But yes, what a blow. And you are going to need to look after yourself.
You couldnt have had a fuller calender this week!
Is there any way you could get direct payments or some such for a home help? Respite break? I know nothing about these but have heard others mentioning it where you can pay for services to help you.
Even if it was just for a couple hours a day so you can get some more sleep!
Aw shit, Couthy. That's a lot on your plate. I'm sorry we can't do much more than hand holding.
I have a Charity starting to help me. Step one, re referral to Adult Social care. To try to get them to provide the things they put on my Care Needs Assessment 4 sodding years ago but have provided absolutely fuck all of.
Step two. They are helping me fill in a DLA form for myself, seeing as ATOS magically cured my disabilities nearly 2 years ago, yet they somehow appear to have got worse, not disappeared...
Step three. Apply for my free bus pass.
Can't get respite etc. When I am referred to the Children with Disabilities team, they can't help me because I have had previous involvement with Child Protection (was on the At Risk register due to age/my own upbringing when DD was born).
Child Protection come out, look around, hear me out, and say they can't help me because they have no concerns about they way I look after my DC's, and they don't have access to the budget for Respite etc.
Rinse and repeat for the last 7 years.
So no, no respite, no help from SS wrt the DC's disabilities. Because of red tape. The last CP SW that came out was in tears because she just couldn't help me, and she could see I needed it.
Fucking hell - I can see why you said you had too much on your plate already to waste energy on idiots on threads (clearly paraphrasing!)
I'm sorry they have confirmed your worst fears. 2 out of 4 already is definitely more than enough for anyone, let alone a disabled lone parent
I can't help you with any of your questions - but I can hold your hand x
That is not on
MP? Maybe he can hassle the two SW and bang their heads together? If both can see you need the break then one of them should step up to the mark. x
Good you have someone helping you sort some of the things out though at least that is a start. Maybe they would have some ideas on where to go next.
I saw her today, actually. We managed 3 pages if the DLA form.
She told me to ask to see the Nurse Practitioner at the GP's, with a view to getting her to support me doing an application for DLA for DS3, on grounds that his severe allergies mean he needs more care than most 21mo's. and I guess the hyperactivity diagnosis (though not yet ADHD, the report definitely states hyperactivity) will go towards that too. And I guess that is a start.
And Ex is asleep on the sofa with DS2, as I can't have him in the room he shares with DS1 while DS1 is recovering from surgery until DS2 stops puking.
He is meant to be watching DS3 for me. He is snoring. So now I need to go and do the middle of the night shift.
DS3 is sitting in the armchair, watching a documentary on how humans evolved. He is doing his tongue thing (he goes blurbleblurbleblurble poking his tongue in and out) and nodding every time the documentary imparts an interesting bit if information. While licking a biscuit he won't eat.
This is my life.
Message withdrawn at poster's request.
I can help with the section 332 referral to the educational psychologist, though strictly speaking the pead is being inaccurate. A section 332 referral is a legal duty of community peadiatricians, to notify the local authority (not the ed psych) of a child who appears to have SEN. In some local authorities they go to LA and ed psych but they are a notification, not a refferal per se. In our LA they are used at a joint meeting to prioritise early years EP casework. Not all children notified to the local authority necessarily need an EP.
I'm sorry about your little guy. I empathise massively. I have 4 kids and though only one is diagnosed with anything yet, it's very much 'yet'. I am watching my youngest with a sinking feeling as she gradually withdraws socially ATM...
It's horrible, seeing it all over again, isn't it?
My issue is that while I know about Autism, ADHD is a new one for me, that I don't have much experience with. Where can I get some advice about getting him to sleep, or focus on an activity?
I'm wondering how I will do SALT exercises with him for starters? Or Physio? I have been trying to do simple SALT tasks with him, but he has the attention span of a daddylonglegs! I'm not getting very far.
I've also been attempting Physio exercises, simple leg and arm flexes, due to the hereditary Hypermobility I do them with all the DC's from birth. Barely able to do a flex on one limb before he has twisted himself out of my grasp and climbed up something.
How do I get him to engage with the things he needs to do? I managed with the other two that have Autism, but DS3 is a different kettle of fish!
And just for my own information, it's not standard to have to TIE your toddler into a trolley using their reigns for their OWN safety, is it?
I haven't had to do that with any of the older 3.
My heart so goes out to you. I cannot imagine the weight you are bearing but couldn't read and not say something to acknowledge your very difficult situation.
I don't know how to be of help except to say that to apply for Direct Payments and the process is entirely based around each of your children (which would be 1 application each going in, and you...section 23 is the dependents and section 24 is the carer...you have to push hard for this and make sure that each childs section 23 is linked all the way through to you and that all these individual sections then has to be presented as 1 whole assessment as a family....you need a shit hot SW to do this work and it takes about 6/8hours for each child/form (done over 1/2hours sessions weekly).
I'm in Scotland but the process will be similar if not the same I think wherever you are??...others may no more about this though for your part of the country.
You need support and this is probably your best route. It's a lengthy, difficult process but by now you have likely become used to jumping through hoops of fire to gain any positive help so you will know the system enough. It's similar to doing DLA forms but you're doing it with the SW and they are recording every bit of info whilst you talk and describe everything. They are in your home, witnessing and talking with your kids, etc too...all building the full picture of info and evidences.
It's hard going and takes quite a long time to complete but if you can set your mind to the task...you will get there.
I have no idea how long you might wait to have this work actually done...SW don't seem to have particular people who go out doing this work so may need to 'find' someone specific for your case (I waited 4 months for them to find and start this work with us)
You know what the system is like so you know it isn't easy...just our determination is what it is always about....don't be put off, start hounding now and don't let up...easier said than done I know
Sending you hope and strength in support to you (((())))
Oh, so sorry. . Have PM you as well.
Your ds should get DLA, if not, appeal. Special diets, developmental needs and hyperactivity are much more time consuming than a 'normal' toddler dc's care. If he also needs a lot of night time care it'll be high rate care.
If you need to have immediate emergency transport access because of major reactions (eg he might need instant epipen and then urgent A&E) then it's also higher rate mobility, blue badge etc. Normally dc only get mobility if 3y plus, but even for DWP, life-threatening emergency needs trump date-of-birth.
I would also get your local councillor to approach the Head of Children's services on your behalf. Brief (or even prolonged) CP input for 1 child some years ago cannot legally disqualify an entire family of dc from appropriate help. Especially since, with hindsight, it was probably her (then undiagnosed) autism which made you unable to cope. And your lack of support, bad upbringing etc would have distracted the social workers from realising there was something developmental going on.
A lot of night time needs? Well, he didn't go to sleep until 5am this morning. And was awake at 9am.
He has to be watched 24/7 too. DS1 left the laptop under the sofa. I didn't know as my ex was looking after him. When I went to the loo, he pulled half the keys off my laptop again. Thing is, he doesn't just pull the keys off, he pulls the clips off too. And separates the two bits of the clips.
I haven't been able to find 'G' since he last did this. Now the 'H' key isn't working either. I'm going to have to pay for a new keyboard FFS.
It was prolonged, but other than malicious calls to them by a bastard ex, and the resultant one off visits, there has been no real involvement with CP for ten years - to the point where DD was put on the 'At Risk' register at birth, but 4 years later, my now 10yo DS1 wasn't. Yet even after ten sodding years, it is the excuse for refusing me the help I need.
Would they pay mobility for urgent transport needs if the money had to be spent on Taxi's as I can't legally drive due to my epilepsy?
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