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Topic: Services for a child with Aspergers, possibly bipolar  (Read 3836 times)

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Re: Services for a child with Aspergers, possibly bipolar
« Reply #15 on: January 29, 2021, 07:09:24 PM »
  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!

One of the main reasons I chose the US to move to... I spoke the language!  ;)


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Re: Services for a child with Aspergers, possibly bipolar
« Reply #16 on: January 29, 2021, 08:48:26 PM »
I'm sorry you've got to wait until lockdown is done @KFdancer   We were amazed at how much progress our son made with the therapist.  I appreciate they are experts in what they do-some of the tips were so simple and yet, entirely profound.  We are lucky in Liverpool that the playwright Willy Russell set up a charity for children and adults that stammer, so my son got referred there really quickly.  There are some resources here: https://stamma.org/get-support/therapies-courses/specialist-services/willy-russell-centre  (it's been noted that our son's stammer has gotten worse in lockdown...)

I taught/lived in the Czech Republic for about 2 years and my students LOVED to tease me about that sound.  I remember having to travel frequently through Prerov (can't find where to put that hachek over the R) but that was fun. It's so difficult.  The only thing I'm good at now is being able to pronounce some Czech footballers last names, ha!


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Re: Services for a child with Aspergers, possibly bipolar
« Reply #17 on: January 29, 2021, 10:03:32 PM »
I'm sorry you've got to wait until lockdown is done @KFdancer   We were amazed at how much progress our son made with the therapist.  I appreciate they are experts in what they do-some of the tips were so simple and yet, entirely profound.  We are lucky in Liverpool that the playwright Willy Russell set up a charity for children and adults that stammer, so my son got referred there really quickly.  There are some resources here: https://stamma.org/get-support/therapies-courses/specialist-services/willy-russell-centre  (it's been noted that our son's stammer has gotten worse in lockdown...)

I taught/lived in the Czech Republic for about 2 years and my students LOVED to tease me about that sound.  I remember having to travel frequently through Prerov (can't find where to put that hachek over the R) but that was fun. It's so difficult.  The only thing I'm good at now is being able to pronounce some Czech footballers last names, ha!

Thanks for the link, having a look now.


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Re: Services for a child with Aspergers, possibly bipolar
« Reply #18 on: January 29, 2021, 11:44:57 PM »
Oh man, I leave y'all alone for a couple days and.... ;)

I never *really* know what the right thing to do is, but waiting for care--even if we started the move right now--is not an option.  It was urgent starting not long after the Covid started, when both the child and my brother started having extreme episodes of...mania, rage, anxiety... whatever.  I had to get him moved first, because he was an extreme hinderance to getting our home in some semblance of order and calm.

Then I started talking to the kid's therapist, but we were in the middle of selling our house and trying to get moved and we had to [likely against our better judgement] go for the option of putting that child in in-person school so she could get the attention and care and we could all get a break from each other.  In our new location [very rural GA], all of my children are in in-person school as the cases here are super low and the risk is vanishingly small.

If we wait to get there and get diagnosed and get her in some sort of care, it is dangerously neglectful.  That is like 2 years almost before we'd even get started. My brother was HER AGE the first time he was institutionalized.  And the behavior can accelerate lightening fast.  If this is Autism and all these behaviors are stable they are STILL NOT acceptable long term. But they are worsening. And it looks like bipolar to me, but I'm a hammer and bipolar is  my nail because I've been dealing with it my whole life.  A diagnosis cannot wait 6 months [which would be the earliest we could get there, but that is not possible due to money].  I don't care if I have to do it again.  I need her in care now.

Another line of thought: KFdancer mentioned that there was a long wait for speech after a referral. I've got TWO kids who have already been in speech for years, one who has Dyspraxia [my youngest, not the autistic kid].  NOTHING will Xfer? I understand re-evaluating, but I don't understand care being interrupted.  She falls behind quickly when she's not in constant therapy. Also, just a bratty foot stamp, 22 months is ridiculous even under a backed up system. Babies can't wait.
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 #19 on: January 30, 2021, 12:13:48 AM »
Now I am low key panicking.

If we get started on a plan here, but then the UK doesn't diagnose children with whatever they diagnosed here, where does that leave her?

There are no right answers, and I don't guess I'm looking for them here.  Mama did her absolute best at the time and my brother is a hot a* mess at 39. Not in treatment and barely admits he even has a problem let alone that he has been OUT OF HIS MIND manic for the last almost year. I pay all his bills and keep him off the ledge, but he thinks he's independent. Not living in reality.

I don't know how to do better for her? I know I can't have my entire life be about just her.  We are moving for a lot of reasons, but I'll take less options for mental health diagnosis and treatment if the police officer responding when she inevitably loses it DOES NOT show up with a gun.  How much worse can it be?  And we can afford private care anyway.

BTW I think someone mentioned it above, my spouse and all my children are UK citizens.  I am the only one who is not.

Thank you all for your tips.  I'll look into it and hopefully some answers and maybe a plan before we move over.

Malvern is where we are moving. In Worcestershire.  Unless something comes up that changes it, we'll be moving to Malvern.
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 #20 on: January 30, 2021, 05:35:48 PM »
Now I am low key panicking.

If we get started on a plan here, but then the UK doesn't diagnose children with whatever they diagnosed here, where does that leave her?

There are no right answers, and I don't guess I'm looking for them here.  Mama did her absolute best at the time and my brother is a hot a* mess at 39. Not in treatment and barely admits he even has a problem let alone that he has been OUT OF HIS MIND manic for the last almost year. I pay all his bills and keep him off the ledge, but he thinks he's independent. Not living in reality.

I don't know how to do better for her? I know I can't have my entire life be about just her.  We are moving for a lot of reasons, but I'll take less options for mental health diagnosis and treatment if the police officer responding when she inevitably loses it DOES NOT show up with a gun.  How much worse can it be?  And we can afford private care anyway.

BTW I think someone mentioned it above, my spouse and all my children are UK citizens.  I am the only one who is not.

Thank you all for your tips.  I'll look into it and hopefully some answers and maybe a plan before we move over.

Malvern is where we are moving. In Worcestershire.  Unless something comes up that changes it, we'll be moving to Malvern.

With all the planning in the world, there is going to be a disruption of serviced based treatments during an international move.  Things don’t happen fast here.  It becomes apparent on Day 1.  ;)


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Re: Services for a child with Aspergers, possibly bipolar
« Reply #21 on: January 30, 2021, 07:16:30 PM »
I think the thing to be aware of, as @KFdancer pointed out, is that things do not happen quickly and especially as you are not part of the system and can't be until you're here, it will take some time.  It can also massively be dependent on where you live.

A quick Google found me this for Malvern: https://www.hacw.nhs.uk/childrensslt/ There is an email address where you may be able to contact someone that might know wait times depending on need.

Again, they aren't really going to be able to help you until you're here.  And by being here, you're going to need to register for a GP and a school.   My son was referred by his nursery. If I remember correctly he was referred at 4, and was finally seen by the referral when he was 6.  We chose to go private because 1) we didn't feel like he could wait but also, and perhaps more importantly (and unfairly) 2) we could afford it.  It was very expensive-but we felt like worth it.  We entirely acknowledge our privilege in this regard. We were also very lucky as I mentioned before that we could use the services of a local based charity called the Willy Russell Trust.  We got in within a few months and a speech and language therapist was able to assess my son's stammer and also the extent to which they felt he might grow out of it/might need specific therapy. Had it been worse, we would have had therapy via them-way earlier than the referral that we had.

Once we were referred, we had to go to the therapist-it wasn't someone that was in school. This could be different in different localities but perhaps different from the USA where they might be within a school or school district (I just got pulled out of class and they were in my school.)

Others on the forum may have more substantial information regarding mental health but this is another area where you may have a wait and where charities and private care may have to fill the gap.  My husband had a mental health crisis at the end of November and he's finally getting on a treatment programme starting on Monday.  I appreciate there's a gap because of Covid, a greater need for mental health services, the Christmas holiday when things basically shutdown and a lot of back and forth between our GP and psychiatry services, which may be localised problems.  But it's been incredibly difficult and making phone calls and demands haven't made our experience any easier. 

Think you just need to be aware that continuity of care across the ocean will almost certainly have a break and might not necessarily be what you expect.  As said before, you can prepare but there are some variables that you won't know until you are here and see the strain of the NHS services in your own locality and what you may/may not be entitled to. 

I'm not saying don't move-I've spent almost my entire adult life here, so this is the only medical system I've used, really.  But there are gaps and difficulties (and I love the NHS!)



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Re: Services for a child with Aspergers, possibly bipolar
« Reply #22 on: January 30, 2021, 08:09:56 PM »
If your child has high care needs with mental health, you should thoroughly research CAMHS wherever you are moving. They are understaffed with lengthy waiting lists most places in the country, so many kids are falling through the cracks.  Move because you need to/want to, but also budget in private health care if its something you know you will need quite quickly. You cannot rely on the NHS for mental health care, even as an adult.


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Re: Services for a child with Aspergers, possibly bipolar
« Reply #23 on: January 30, 2021, 08:45:00 PM »
more importantly (and unfairly) 2) we could afford it.  It was very expensive-but we felt like worth it.  We entirely acknowledge our privilege in this regard.

I'm not saying don't move-I've spent almost my entire adult life here, so this is the only medical system I've used, really.  But there are gaps and difficulties (and I love the NHS!)



This.  I’m happy with the NHS and knowing that it’s there for life/death situations.

But in my 10+ years here, I’ve privately had to pay for dermatology for skin checks, mole mapping, non invasive pregnancy testing (turned down NHS covered amino due to risk of embryos life), vasectomy, allergy testing, respiratory care, and many MANY other things.  I’m not complaining, as it’s a privilege I can afford.

The only thing that has bothered me is when I pay privately for appointments at NHS facilities....  a bit ironic....


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Re: Services for a child with Aspergers, possibly bipolar
« Reply #24 on: January 30, 2021, 09:27:42 PM »
Really, paying for private care for one child [the rest of us are in pretty good shape] is not that big a deal.  Also, Vasectomy is done, allergy testing done and we all had shots for years and are good, don't expect the NHS to cover chiro or massages and insurance doesn't cover that here either!  We will likely have private insurance with my husband's job, too.

Buckets of privilege here. And healthcare is overall STILL CHEAPER there. It's still a major win for the budget.

Not expecting there to be no gap in care--although we can still do therapy via video indefinitely--I just can't tolerate 2 years of no care.

We'll figure it out. Right now  my main concern is NEXT WEEK. I'm scared.
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 #25 on: February 02, 2021, 07:17:58 PM »
Update on SALT.  My area is officially on a 56 month waitlist.  Sign your kids up at birth!


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Re: Services for a child with Aspergers, possibly bipolar
« Reply #26 on: February 03, 2021, 06:50:29 PM »
We are moving for a lot of reasons, but I'll take less options for mental health diagnosis and treatment if the police officer responding when she inevitably loses it DOES NOT show up with a gun. 

The UK has armed response police and they likely will arrive if there are reports of a weapon involved. This one from 2005 always sticks in my mind for some reason.
http://news.bbc.co.uk/1/hi/england/humber/4371071.stm

Some supermarket malls have armed police.


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Re: Services for a child with Aspergers, possibly bipolar
« Reply #27 on: February 03, 2021, 09:25:53 PM »
The UK has armed response police and they likely will arrive if there are reports of a weapon involved. This one from 2005 always sticks in my mind for some reason.
http://news.bbc.co.uk/1/hi/england/humber/4371071.stm

Some supermarket malls have armed police.

I doubt she'll have a weapon.  Like my brother before her, police will likely be called because of hysterical shouting and slamming her body into things.
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 #28 on: February 03, 2021, 09:41:31 PM »
I doubt she'll have a weapon.  Like my brother before her, police will likely be called because of hysterical shouting and slamming her body into things.
Why are you uprooting a child who is already struggling? It sounds like you've already determined your plans for their future. I'm definitely unfollowing this thread now. As an autistic adult your responses are incredibly disturbing.


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Re: Services for a child with Aspergers, possibly bipolar
« Reply #29 on: February 03, 2021, 09:52:07 PM »
Why are you uprooting a child who is already struggling? It sounds like you've already determined your plans for their future. I'm definitely unfollowing this thread now. As an autistic adult your responses are incredibly disturbing.

I'm sorry it's upset you, Margo.  I can't live my entire life for the well-being of one person when there are five of us.  And it's really up in the air whether this will be good for her or not.  We could stay here and it won't help at all.  Bipolar [which will likely be her diagnosis], is very unpredictable. My brother had perfect stability and still went out of his mind.  And if we are more relaxed and happy in our location and surroundings that can only be good for her.  For all of them.

Further, life is simpler there.  We will have more time, more holiday, and less stress.  All of those things will help us be better parents and better able to handle this.  If these outbursts were happening regularly a year ago when we lived in the more chaotic city with more activities and responsibilities, they would have broken us. Moving to a quiet rural small town has been nothing but good for all of us. Believe me, I have thought about how uprooting her would have an effect. But the things that matter, our family, our things, our systems and routines, matter WAY more than where our house is located.
« Last Edit: February 03, 2021, 10:01:41 PM by Wren Black »
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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