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Topic: Services for a child with Aspergers, possibly bipolar  (Read 3837 times)

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Services for a child with Aspergers, possibly bipolar
« on: April 05, 2019, 03:46:14 PM »
Currently living in ATL considering moving to York [or possibly Worcester or Cambridge ??] in the next 3-4 years.  Trying to do the math, but I don't even know where to start. I *think* we're better off here financially, but that doesn't necessarily mean we don't wanna move.
Also planning on spending half a day inquiring about all of the following next visit to see MIL.
But anyway. Does anyone have experience bringing a child with Asperger's over? What are the differences in available therapies, and is everything needed covered under NHS? Currently we are maxing out our deductible and this year we will likely get to our out of pocket max [$7000 plus premiums]. I just want to get an idea of what it will be like, and what to expect, and how much out of pocket we will need to pay, if any, for her care.
As far as the bipolar goes, she's too young to diagnose, but my brother [who she's exactly like in almost every way]  IS bipolar and was in fact institutionalized for three years when he was a teenager. Now I'm not thinking that will happen here, but when hormones hit, who knows?
I just need to know if moving will significantly help or hurt this child, and what sort of care we can expect.
Thanks for any info!
4 December 2005--Met in ATL, Moved in together
July 2006--First visit to the UK, met his Mum
Feb 2007--Eloped and told everyone we were engaged ;)
May 2007--Wedding, Part 1 in Pine Mountain, GA;
Sept 2007--Wedding, Part 2 in Scarborough, UK
Nov ‘08–1st Child
May ‘10–2nd Child
June 2013--Decided to move to the UK!
July 2013-Jan 2016–family tragedies. Delayed move
April ‘15–3rd Child
2019...planning again
January 2022–applying for visa!
Goal: Get Eldest in UK school by year 9!
Hopefully moving to Malvern June 2022


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Re: Services for a child with Aspergers, possibly bipolar
« Reply #1 on: April 05, 2019, 03:55:02 PM »
I think you need to consider the impact of a major life change on a child with special needs. How old will they be when you move? And do you plan on putting them in a private school to continue their US education or transfer to the UK system? Mental health care for children is generally lacking in the UK but there are some supports available. It will be very dependent on the specific school you end up in though.

Would you be moving as the family of a British citizen, or on a work visa as a temporary move? (not sure if that was covered elsewhere) The type of visa will impact some of the services and support available.

As an FYI.. I moved here as an adult who is likely autistic (they're sending me to neuropsychology for an assessment). I was extremely lucky in the mental health support I've gotten thus far, because the culture shock and everything surrounding the move pretty much shattered me. Its getting better now a year and a half in, but it really has not been easy. If I'd been a teen going through this I don't think I would have managed at all.

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Re: Services for a child with Aspergers, possibly bipolar
« Reply #2 on: April 05, 2019, 04:25:37 PM »
Perhaps this might help?  https://www.autism.org.uk/

As someone familiar with Aspergers (it's in the extended family), I can offer that I have seen the results of moving a pre-teen who had Aspergers to a new environment. Of course, that was back before there was any sort of intervention available so the child had no special training or support at any point in their life up to the point of the move, and none after it. They regressed somewhat, but then caught back up and moved on more or less as they had been doing.  It was pretty apparent they had some serious anxiety issues, which went unaddressed, but they did manage to get through their middle-school and high-school years before colliding with the working world (where they were at a significant disadvantage).  As the Autistic Spectrum runs from completely non-verbal/minimally functional all the way up through genius/socially impaired (with all sorts of variations along the way), it's hard to know what to suggest to you.

All that being said, the fact that you are aware of the challenges your child faces is a huge benefit to them. If they are young enough, and you continue to work with them, and they are placed into a structured environment over here, I don't see why they would not do as well as they would do in the USA.  Unfortunately, I can't tell you anything about what kind of assistance they might get in the state school system. Perhaps a specialized private school might be better if they are more seriously impacted?

I do have one observation about people with disabilities in the UK, though, to make. It seems like generally people are more aware of people with disabilities here, but there seems to be much less in the way of legal protections for them. Especially once they become adults. But that's my impression, and not based on a thorough search of the law. I have seen much, much more in the way of "hate crime" towards disabled persons here than I ever saw in the States - it's on the horrifying side, sometimes.
« Last Edit: April 05, 2019, 05:08:11 PM by Nan D. »


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Re: Services for a child with Aspergers, possibly bipolar
« Reply #3 on: April 05, 2019, 06:26:03 PM »
Mental health care for children is generally lacking in the UK
This.

I have no first hand knowledge, but I do keep up with the news and the state of the NHS.  Overall, the NHS has been starved of funds to the breaking point.  Several hospitals in London are closing and it's not because they aren't needed.  One is being kept open ONLY because they don't have enough money to demolish the buildings.  And that's mostly for physical problems, mental health has always been ignored and underfunded even by those standards. 


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Re: Services for a child with Aspergers, possibly bipolar
« Reply #4 on: April 05, 2019, 06:32:49 PM »
We had a member have SERIOUS problems for the first couple of years in the UK.  Her daughter was 8 or 9.  It’s really tough to get services.  Kind of “you get what you pay for”.  It’s always advised to go private to get care.

I’m a governor over a group of schools and I’ve learned way too much about how lacking the services are for special needs.  And about 25% of the population is considered special needs.  :o

As with most things, it’s a post code lottery.  But the NHS does not cover everything, nor do they pretend to.


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Re: Services for a child with Aspergers, possibly bipolar
« Reply #5 on: April 05, 2019, 06:34:31 PM »
Just want to add that I think the mental health care here (in general, not just for kids) is severely lacking. Not enough support for all those who need it leading to massive wait times. The difference is an adult can be a bit more rational and than a hormonal minor.

Definitely something to consider as that will be a massive impact. Moving children to such a different environment combined with lack of readily available, quick moving mental health care isn’t impossible to navigate but won’t be easy so not a decision to make lightly


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Re: Services for a child with Aspergers, possibly bipolar
« Reply #6 on: April 05, 2019, 06:54:45 PM »


I do have one observation about people with disabilities in the UK, though, to make. It seems like generally people are more aware of people with disabilities here, but there seems to be much less in the way of legal protections for them. Especially once they become adults. But that's my impression, and not based on a thorough search of the law. I have seen much, much more in the way of "hate crime" towards disabled persons here than I ever saw in the States - it's on the horrifying side, sometimes.

If you have a completely visible disability there is a bit more understanding here. If you have an invisible one it's much worse. And if you claim benefits you will be accused of being a cheat, having neighbours report on you and so on if you are even slightly functional. The government has made a hostile environment towards the disabled as well, and it shows. (The UN has found them to be in violation of the human rights charter in that regard.) There are very few workplace protections as well, with the general attitude that if you're disabled you should just claim benefits vs an employer working with you. That will vary by industry and employer, and of course not everyone will have the same experience. I am hoping this improves as more disabled people are aware of the problem and working towards solutions. Also, accessibility isn't guaranteed even in new buildings/train stations etc. People park on the sidewalks blocking wheelchair access. It's really not a disability friendly country.


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Re: Services for a child with Aspergers, possibly bipolar
« Reply #7 on: April 05, 2019, 07:54:22 PM »
The best way to find out what services might be available, would be to join a UK aspergers internet forum.

The NHS is paid for out of taxes. The MPs have already said the UK has a big problem with a lot of people using the EU routes to get to the UK, going self employed and paying little taxes, then expecting to use the NHS bill free for themselves and their children. Other EEA countries have insurance based health service and these would be billed monthly to use that country's health service if they moved there. The NHS is easy to abuse. It was no surprise that a few years ago the UK announced that although the population had risen by 10 million, the government was taking less in Income tax now, than before that 10 million rise in the population. The government web site showed that the Brits have no desire to put more money in to fund the NHS and would rather the abuse was stopped.

Adding to the NHS abuse; when this problem first raised its head, the then goverment decided that privatisation of the NHS was the way to go with PFI contracts. Sold as an invest now and get huge returns later for private investors, many hosptials are now finding that they have to pay a huge percentage of their budget to these private investors.

https://www.telegraph.co.uk/comment/9356622/Labours-PFI-landmines-continue-to-explode-in-the-NHS.html

https://www.heraldscotland.com/news/14432710.30-billion-the-cost-of-labours-toxic-pfi-legacy-to-scotland/

« Last Edit: April 05, 2019, 07:59:06 PM by Sirius »


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Re: Services for a child with Aspergers, possibly bipolar
« Reply #8 on: January 25, 2021, 12:34:59 AM »
Thank you all!  I have been in the TRENCHES lately as the above mentioned child has become more difficult, not to mention my untreated unmedicated bipolar brother got worse and worse before having a 6 month manic episode after the covid started and I had to find him alternative housing. 

BUT. Now that I see he can live somewhere not in my house [I still financially help him, but firm boundaries], we pretty much immediately decided that we are GTFO of Atlanta ASAP.  In fact, we already left.  We sold our house and are living in my [much cheaper] rural hometown with a plan to apply for my Visa in about a year from now. I have a budget, a savings plan, and lots and lots of spreadsheets!

Every sign points to the above mentioned child *also* having childhood onset bipolar disorder.  She is months away from being the same age my brother was [11] when he was sedated and dragged off to a mental health facility due to the onset of his first extreme manic episode. They didn't diagnose children back then, but my daughter has an appointment soon so we can start treatment.  The jury is truly out on what her diagnosis will be, but Aspergers and Bipolar both run in my family.  Pretty sure in husband's family too, but as they are British no one has ever sought treatment or even realized there might be an issue. Blegh.

Anyway. I'm back.  Fully! This is really happening and I hope we can get kiddo into a good care plan before we make this transition. 

For what it's worth, we also have a low key plan for hubby and the other two to maybe head over as soon as I start the visa process.  It'll be better for Eldest Child to get into school because she'll be in year 8 next year, and the little one has some special needs so getting her into school and learning the ropes with 'the easy one' will hopefully help us navigate the system better once I come with Middle Child. That way if the visa takes longer than we hope, they are already getting started with school and to look for a house to buy.

4 December 2005--Met in ATL, Moved in together
July 2006--First visit to the UK, met his Mum
Feb 2007--Eloped and told everyone we were engaged ;)
May 2007--Wedding, Part 1 in Pine Mountain, GA;
Sept 2007--Wedding, Part 2 in Scarborough, UK
Nov ‘08–1st Child
May ‘10–2nd Child
June 2013--Decided to move to the UK!
July 2013-Jan 2016–family tragedies. Delayed move
April ‘15–3rd Child
2019...planning again
January 2022–applying for visa!
Goal: Get Eldest in UK school by year 9!
Hopefully moving to Malvern June 2022


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Re: Services for a child with Aspergers, possibly bipolar
« Reply #9 on: January 28, 2021, 09:00:11 PM »
I wouldn’t focus on getting a diagnosis and care plan in place in the USA with an eminent move.  It won’t be recognised here and she will have to do assessments all over. Not to mention not all medications/treatments are available here that are available there and vice versa.

Our son has been referred for speech therapy and it’s a 22 month waitlist.  We are going private but that is a 4 month waitlist.

Make the move ASAP.  Kids are all jacked up with only 16 weeks of education out of 52 (assuming they return March 8, otherwise  come March 20, it’ll be 13 weeks). So may as well join in as they try to get kids back into the rhythm and catch kids up.


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Re: Services for a child with Aspergers, possibly bipolar
« Reply #10 on: January 28, 2021, 09:41:08 PM »
Random aside @KFdancer  Similarly, my son had a very long wait for speech therapy (I think it was 18 months) and we also opted to go private.  You may have already found whom you wanted to go with but we were recommended this site: http://asltip.com/   It's the Association of Speech and Language Therapists in Private Practice.  We were able to find someone within a few weeks (I know, different times!)  It was amazing what my son got out of even a few sessions. Still stay on the referral list, though-we found that really helpful by the time he got to that age (started with speech, then developed a stammer and they were able to help with that and refer onto more help!)

Thought I would mention in case you hadn't already heard of this-apologies for the deviation from the thread!


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Re: Services for a child with Aspergers, possibly bipolar
« Reply #11 on: January 29, 2021, 08:33:33 AM »
Another random aside:
In the Czech language, there's a sound written as ř , or r with a little hat over it.  It's really, really hard to pronounce and lots of poeple can't do it.  President Havel famously couldn't pronounce it.  People tell me that there was an army of speech therapists, all trying to teach this impossible sound to helpless children back in the olden times. 


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Re: Services for a child with Aspergers, possibly bipolar
« Reply #12 on: January 29, 2021, 08:46:54 AM »
Another random aside:
In the Czech language, there's a sound written as ř , or r with a little hat over it.  It's really, really hard to pronounce and lots of poeple can't do it.  President Havel famously couldn't pronounce it.  People tell me that there was an army of speech therapists, all trying to teach this impossible sound to helpless children back in the olden times.

I wouldn't be able to!  ;D



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Re: Services for a child with Aspergers, possibly bipolar
« Reply #13 on: January 29, 2021, 06:31:34 PM »
Random aside @KFdancer  Similarly, my son had a very long wait for speech therapy (I think it was 18 months) and we also opted to go private.  You may have already found whom you wanted to go with but we were recommended this site: http://asltip.com/   It's the Association of Speech and Language Therapists in Private Practice.  We were able to find someone within a few weeks (I know, different times!)  It was amazing what my son got out of even a few sessions. Still stay on the referral list, though-we found that really helpful by the time he got to that age (started with speech, then developed a stammer and they were able to help with that and refer onto more help!)

Thought I would mention in case you hadn't already heard of this-apologies for the deviation from the thread!

Yes that’s exactly how we were able to find the one we are going with. Just can’t start until lockdown is lifted. Ugh!  May be never.

Nursery is concerned with a stutter but we’ve only heard it a couple of times at home. I genuinely think it was just a development phase (where he can’t think of the word to get it out of his mouth) but they have been around kids for 20 years. They say he needs SALT, we are getting SALT.  :D


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Re: Services for a child with Aspergers, possibly bipolar
« Reply #14 on: January 29, 2021, 06:44:44 PM »
I wouldn't be able to!  ;D


  Thanks for that little trip down memory lane Larrabee.  Even I was starting to doubt my little story was true after all these years.  And nobody is allowed to search and find how many times I've repeated it here like a rambling old man. 

That video just reminded me how friggin' diabolical that dang language was.  And how when we moved there back in 1995 the society hadn't been open very long and they weren't used to foreigners and wouldn't understand you if you messed up the pronunciation even the tiniest little bit.  I also remember that the ř was a crucial part of the number 4, and if you couldn't say the impossible ř good enough you could never get 4 of anything.  I coped with this by actually buying things in threes or fives, or by waving four fingers at the same time. 
Did I mention that almost all of the stores required you to approach a desk and ask for what you wanted instead of just getting it off the shelf yourself?  And the words for "that" and "there" were brutally complicated depending on how many things, if they could be moved and all other nonsense.  Just saying "that box of cereal" was impossible. 

Man, I really miss it.  Every time I see a police photofit of a suspect I think of the time they thought I bombed the hospital and made up a photofit of me and showed it to me and asked if I had seen the person.   I wish I thought to keep that as a souvenir!


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