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I don't know how you all do it, I feel like I am falling apart.

(30 Posts)
NatalieJane Wed 24-Nov-10 09:10:16

Back ground: DS2 (4 next month), we were told just over a month a go he has ASD and (what I thought was) Hyper Mobility Joints.

I misunderstood the HV and thought DS2 had Hyper Mobility, but it turns out he has Hypo Tonic limbs instead (big whoopsie on the DLA form blush). Reading about the two conditions, they both seem to amount to the same thing, too much movement is allowed, though it seems Hypo Tonic Limbs can create many more problems, have read about eventual blindness and the need to use a wheelchair.

So why hasn't he been referred to a Physio or whatever else about this? Should I ask the HV (His key worker)?

Am seriously starting to feel the pressure of the drip feed situation we're in. HV comes in and says he does X, Y, and Z, he has Autism and this Hypo Tonic thing, and as good as she has been, pretty much leaves us to it. I have been reading till I can't focus anymore about Autism, reading things that I'm sure a lot of you already know, that are bloody scary enough on their own, and now this comes up with the Hypo Tonic isssues, and I am just bewildered, we're at the point where I don't think we can take anymore, and then there is yet another cold dish of shock, anger, and hurt served up, salt to rub in the wound.

Every day there is something else that he does, that he's always done, that we've never questioned, and it is another smack in the face because we didn't see it before.

He is such a gorgeous little boy, but he is 90% of the time so unhappy, uninterested and unable to understand so much. I am absolutely heart broken for him, he is never going to 'get' life is he?

Not helped by the fact that DS3 (2 next month) is showing many of the same signs to a larger degree, so looks like we'll be going through all of this again.

I am not cut out for this, feel like I am sinking into a hole little bit by little bit every day. And then feel even worse because I should be 'cut out for this', I am their mum, I have to be strong enough to get them through it don't I. I'm just not sure that I am, and if I can't do it, no other bugger will.

Sorry, I have to get this out here because DH is dealing with it all as well, and I don't feel able to add more pressure to him, and I need something to stop it all whirling around my head. Please feel very free to ignore my rants, I'm sure you are all dealing with worse than this blush

StarlightMcKenzie Wed 24-Nov-10 09:28:25

Message withdrawn

intothewest Wed 24-Nov-10 09:33:01

Hi- replying quickly before work,just so you know you are being heard- You are going through a stressful time and I think most of us will have shared your thoughts at some time- I don't think I can say things get easier,but you end up coping,because as you said 'no other bugger will' As I understand it, hypotonic is low toned and you need to push for a physio referal-As for the ASD I'm sure ther are loads of people on MN who will have excellent advice-good luck

intothewest Wed 24-Nov-10 09:34:00

x posted starlight

wasuup3000 Wed 24-Nov-10 09:37:11

The "Holland story" sometimes helps people at this point but I don't have a link to it atm. Pre - diagnosis stinks but at the same time he will prob get a diagnosis quite easily as you have a professional who knows about this stuff backing you up. He's your son and you love him and just focus on that and not the other stuff. It is hard and there is good days and bad days to come, take it easy on yourselves.

Niecie Wed 24-Nov-10 09:44:58

There comes a point for us all where we realise that our DC aren't going to turn out how we invisaged and that they (and us) are going to find out life is going to be more difficult as a result. It hits us all at different times. Some at the start of the diagnosis process, some in the middle of it some when you get the dx and some even further down the line when things have 'settled down' and you realise this is it and nothing is going to change. It sounds like you are going through it now.

It is a kind of grief really. You are grieving for the loss of your expectation of what you thought your life was going to be and for the loss of what you thought was normal.

I certainly felt inadequate to the task in hand often, still do sometimes, and my DS isn't that bad either(AS and dyspraxia but on the milder end of the scale). Doesn't make him fit in any better at school though and it doesn't stop the fact that he needs more support from the school and from us and that we as his parents have to be the ones to work for it.

I don't know what to say really other than to be kind to yourself, don't worry about the whirling in your head, it will sort itself out eventually and you will accept what is happening and you will cope and be able to deal with it. It isn't a quick thing though. The best thing you can do is read what you can bear to read at the moment and keep talking to your DH otherwise this can drive a wedge between you. Has your HV or anybody given you the address for local support groups? Some people find them useful and if you think you would ask about them. Any support you can get is useful.

With regard to the hypotonic problems, ask your GP (or your HV if you prefer) if you can be referred to an OT. I am pretty sure my DS has some issues with this (I seem to remember the hypertonic neck reflex being still there when it shouldn't have been - does that ring a bell or am I talking out of my hat?) The OT might be able to help with strenghtening exercises.

Stay strong and look after yourself, it sounds like you are doing a good job so far and you will cope, honestly. smile

bigcar Wed 24-Nov-10 09:49:19

nataliejane, you are doing fine, honestly, I don't think you'll find any of us that haven't been through this, no matter what the dx. You will get through this and it will get better smile

as far as hypotonia goes, you need to stop googling grin you are scaring yourself more than you need to. It's a small chance of your ds ending up as a long term wheelchair user, there's a whole range from mild to profound and not all symptoms effects will happen to all that are hypotonic. Personally I have never read blindness caused by hypotonia, some dcs like my dd3 who has hypotonia have visual impairments but like dd3 the vision is a result of a genetic syndrome and has no connection to the hypotonia.

StarlightMcKenzie Wed 24-Nov-10 09:50:31

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moosemama Wed 24-Nov-10 10:58:35

Oh NJ, as others have said, what you are going through is really normal and part of the process. Its horrible, painful, heartbreaking, relentless and a lot more besides, but you will get through it.

You have already shown that you 'are' cut out for this, you have identified your ds's problems at a young age, and started the process to get him the help and support he needs.

I was just the same 12 months ago when we started down the road with ds1. You grieve for the child you thought your ds was, for the life you thought he would have and the life you thought you would have BUT then you start to realise that your ds hasn't changed, he is still your lovely boy and always will be. Yes some things in his life will be harder than you thought they would be, but just like any other child he will have his own strengths and weaknesses and you and he will learn to build on those strengths and either overcome or mitigate the weaknesses. He will find his own path, it just takes a bit of time.

Someone on here said to me that a diagnosis isn't a label, its a signpost, something to help point you and your ds in the right direction rather than something that defines who he is. He is your lovely boy, he has some difficulties.

You are doing great, he is a very lucky boy to have such a caring and dedicated Mum.

About the Hypotonia, I don't know much about it myself, but one thing I have learned is that if you aren't sure about something one of the professionals says to you, step away from Google. Instead drop them an email or call them. I have found in most cases they are very willing to help clarify things.

I would definitely demand a referral to an Occupational Therapist, as you will get a clearer picture, not only of the problem itself, but also what can be done to help from them than from your HV.

Was it the HV that told you he had ASD and Hypotonia? If so, she is not qualified to do that, she might be able to recognise some of the signs, but that does not make her qualified to diagnose. You need to be referred to a Paediatrician, Preferably a Developmental Paediatrician. (Forgive me, if you have already got a referral - my memory is dire at the moment.)

wendihouse22 Wed 24-Nov-10 11:28:32

NJ, I'm so sad to hear what you're facing right now. I am alarmed that your diagnosis was handed down by the Health Visitor. Lovely as she may be, it is not her job to do so.

My son was diagnoses with autism aged 4. At the time, it was a huge relief as I thought it was "me" and my (now) ex-husband was only too happy to reinforce this theory. Since then, I have found that if IS a constant battle to get the assistance, financial and practical, that you need. It's limited. You have to be strong and just get on with it and then.......be stronger and continue to get on with it! I suspect that you are doing a really good job but, NJ it is hard.

My son is now 10yrs old. He has a Statement for school which I fought long and hard for. It is absolutely necessary to him and it was a huge trauma for me, as a single parent to just keep at it until they awarded it. Same with DLA. We had high rate care and low rate mobility but are not fighting to keep that too. I have met with my MP to say "facilities are crap" for kids like my son. He is helping me with that and with my DLA application.

I am exhausted with it but, have to do this for my son. You're quite right in saying "no bugger else will!"

I look at him now and see a charming little boy, articulate, funny and bright but, he has additional OCD and I, like you, am now realising that he may not have a "normal" life, go to college, get employment, get married, have kids etc and I worry. Just like you and all the other mums on this Special Needs thread because it's utterly normal to want the best for our kids. We want them to have a normal life and for it not to be so very hard for them.

NJ, you'll get through this, because you must. If you need to cry, have a good cry. You're not superwoman. When you need help, ask for it, over and over and over, if you have to. You'll find, in time, that you are stronger than you imagined you could be and that you are a really good mum.

wendihouse22 Wed 24-Nov-10 11:31:27

Apologies for all the spelling/grammatical errors! MUST start reading through before I post.

cory Wed 24-Nov-10 11:31:44

Hypotonia (low muscle tone) is a symptom, not one disorder.

It can be symptom of Marfan's syndrome, which can cause blindness if not properly looked after- but it i more likely not to be. You can test for Marfan's and if the medical professionals were at all anxious, they would have done so.

Both my dcs are hypotonic as part of their Hypermobility Syndrome; they have both been tested and Marfan's has been excluded, so I know their hypotonia doesn't make them more prone to eyesight problems than the general population.

Admittedly, both my dcs do intermittently use a wheelchair because of pains brought on by their hypermobility, but dd is using it less and less as she grows older and I anticipate that she probably won't be using it at all as an adult. And masses of people with hypermobility/hypotonia never need to use a wheelchair at all.

NatalieJane Wed 24-Nov-10 11:32:36

Oh my goodness, thank you so much everyone, really apreciate your time and advice

I guess this is a bad day? I had put bad days down to how many times he has a melt down, how many times he's hurt one of us, but today, it's my turn for a tantrum?!

Think it's not helped by the fact that DS2 and 3 both have really bad coughs/colds, none of us have slept for two days due to the constant night coughs, DS1 hasn't been to school because he is shattered, so everyone is grouchy and moody blah blah blah...

I have found the Holland Story, I had read something before very similar but about Paris v Belgium. It makes a lot of sense.

Bigcar, I can't even remember how I stumbled across it now, but I read a story from an adult girl in America, she said the Hypotonia had affected the muscles in her eyes, they stopped moving basically, and then she stopped blinking, eyes dried up and she was blind.

Moosemama, Yes it was the HV, she is an ex Paed, and did tell us that she wasn't diagnosing him, but that she is certain that is what is going on. She has referred him to a Paed, SALT, Ed Psych, and Portage, she helped us get him into a nursery and completely rubbished comments made by the nurseries SENCo (SENCo said there is nothing wrong with him that some SALT won't sort out, I am deffo no medical professional but even I can see there is more going on then speech problems alone).

Star, I will start that log, have sort of been doing it informally, notes everywhere type of thing, but will get it more structured and organised.

I think one of the hardest things is nothing seems to be happening, Portage have called off because he's now in nursery, SALT is going to be well into the New Year before he is seen, heard nothing directly from the Paed or Ed Psych, though they are doing something because the SENCo had been in contact with them, and the HV has said the Paed had been holiday so we should hear soon, still nothing.

I can't seem to mentally catalogue anything I've read, it's like I'm reading it, but until something happens to jog my memory I can't recall what I've read IYKWIM?

I've said before but it's like trying to teach yourself a new language from the back of a cereal box, you think you've grasped a bit of it, but then the next paragraph throws you back off course, and then you realise there is a whole other side of the box, and you start again, and again, and again... Everytime I think I'm understanding something, something else comes along and muddles it all back up.

Sorry this is all a bit jumbled, it is reflective of the state of my mind at the moment!

NatalieJane Wed 24-Nov-10 11:43:27

Sorry x posted with a couple there.

Cory, thank you, I gave up reading about it after I read the American lady's story, couldn't face any more, maybe I should have another go.

Why is there so much guilt involved, not just because logically I know we haven't done anything to make DS2 this way, but you still feel guilty for that, but it's also we should have done something sooner, we should be able now as his parents to push on and get things sorted, but we're too busy feeling sorry for ourselves and licking our wounds, I feel guilty for not spending hardly any time with the boys because I am constantly on the laptop, reading, burrying my head in the sand, then there is the time of year, usually by now we're all hyped up for the youngest two's birthdays and of course xmas, and it's barely entering my head at the moment.

Flippin' 'eck, someone slap me or hit me over the head with something hard please, I need to get out of this bloody doom and gloom. How do you pick yourself up after hitting the floor so bloody hard?

moosemama Wed 24-Nov-10 12:01:12

NJ, I bought a page a day A4 diary off ebay and write everything in there as it happens. Its been really useful, but I'm now starting to type it up into a daily log on the computer, as its easier to be able to print things out to take to meetings, than it is to lug a huge diary everywhere with me.

I remember now that your HV is an ex Paediatrican (unusual career path) but that still doesn't qualify her to diagnose unless she was a Developmental Paed. Our Paediatrician gave us a verbal/informal diagnosis but then referred us to a multi-disciplinary unit for formal assessment. Which is essentially what your HV has done by referring you to all the other professinals.

I'm not saying she's wrong, as you say you also have serious concerns, just that being told your child has Autism is scary and a huge blow. It might have been more helpful for her to acknowledge the difficulties and refer on than to go into specifics that she can't be sure about until your ds has been properly assessed.

I really understand your foreign language/cereal box analogy. Its important to remember though that being such a complex field, no-one can be sure of what's going on until ds has been properly assessed. Also things can and do change as children grow and develop. My ds has changed a lot over the years and is starting to do some things now that we thought he wasn't likely to be capable of.

I was the same, read everything I could lay my hands on, but then eventually realised I was scaring myself witless and couldn't possibly ever know enough, so it was best to wait and see what the true picture was for my ds before finding out any more. Not least of all because the more I read, the more frightened and depressed I became.

We are just starting to get a clearer picture of ds's profile now, but it has taken 12 months and he is still awaiting formal assessment.

Don't be afraid to find out numbers and call professionals yourself to find out where you are on their waiting lists etc. I was really worried about doing this, but so far everyone has been really helpful and it helps to make me feel like I have some small amount of control over the process.

moosemama Wed 24-Nov-10 12:07:36

You don't need a slap, you need a break, some chocolate/wine and a hug!

I usually find I feel better if I decide to have a book/laptop free day or couple of days (I too am guilty of burying myself in my laptop/books on occastion) and just get on with life as it was before. It helps remind me that my boy is still my boy, my life is just my life and its all still there waiting for me to live it.

There really isn't any more that you can do. Give yourself a break. Can you get a babysitter and go out shopping for your boys' birthday presents, maybe even take dh and have a nice lunch out together etc? It really will help you to feel more (excuse the term) 'normal' again. Basically you need to remember to take care of yourself. You are no good to your ds if you don't. (I know it sounds harsh, but I think its something we all have to keep in mind whether or dcs are SN or NT.)

embracingtangents Wed 24-Nov-10 12:19:58

NJ I don't have any answers really but I know how you feel.

My DD (AS) is simply not the person I thought she was and her future will be nothing like what I imagined when she was born.

I felt better when I decided to chip away at the problems relentlessly but just a little bit at a time, every day. I seem to have the energy for little steps forward every day as I have to pace myself. I am in this for the long haul.

Be determined to look after yourself properly too. You can't care for DS if you're not looking after yourself. I know this is hard though.

embracingtangents Wed 24-Nov-10 12:21:18

X-post with moose - sorry

StarlightMcKenzie Wed 24-Nov-10 12:41:39

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Hellenbach Wed 24-Nov-10 13:01:49

NatalieJane, I am coming late to this thread and you have got loads of great advice and consolation already. I totally understand how you feel, after my son's diagnosis of hypotonia (and Prader-willi syndrome) we had a complete absence of any contact, intervention, support or help. It took so long for the referrals to kick in. I felt totally abandoned and it was one of the hardest times in my life. My son was diagnosed with severe hypotonia by the physiotherapist. Now she says it is moderate. From what I know it does improve with help. The muscle tone is low but muscle strength can overcome that and the body learns how to compensate for the low tone. While you are waiting for the 'professionals' to get their arse in gear can you take him swimming? That way you, like me, will feel like you are doing something positive. Hang in there. It DOES get better x

cory Wed 24-Nov-10 13:05:18

I wouldn't read any more off the internet, Natalie- apart from Mumsnet of course grin

But definitely do as Starlight says and keep a log. This is the one big regret I have re my dcs, that I did not keep proper records which made it much harder to explain what was going on or even to understand it myself.

The first thing I would want to know is:

is there any specific reason for the hypotonia? I think I would ask for a referral to a rheumatologist for this one

then:

is there any evidence that my ds is being hampered by it? is he struggling to do things which most other children his age can do?

is there any evidence that he is in pain?

(remember he may not tell you, because he may not realise it is not normal- to my shame it took us several years to realise that the reason ds had such appalling table manners was because holding a knife and fork hurt his wrists- he never mentioned it because he thought it was the same for everybody and just one of those things you don't talk about)

is there any fun activity we can do to strengthen his muscle tone?

(swimming is particularly good but there are other options if he doesn't like that)

ouryve Wed 24-Nov-10 13:11:01

You're bound to feel overwhelmed, NatalieJane, especially when there's colds and whatnot going around your family, too. My kids are fractious little beasts when they're full of cold. My husband is too!

Cory already explained a bit about hypotonia (low muscle tone) and hypermobility (lax ligaments.) Both of my kids have ASD and my youngest has hypotonia and has hypermobility in his feet. (I have some hypermobile joints, too, so we know where that came from. I also happen to have problems with the extraocular muscles around my right eye, which do occasionally affect my near vision, but I manage that quite straightforwardly with the help of a couple of biros and some silly exercises.) He was a late walker so had the test to rule out muscular dystrophy and has had some physio input with advice about exercises to keep his trunk strong and help with his stability and he also wear Piedro boots with special insoles to support his feet, which are very soft and collapse in as he walks.

Google is a dangerous thing for your own state of mind, sometimes, though. There are many causes of hypermobilty and hypotonia and most of them are (relatively) benign and not progressive.

Anyhow do ask for a physio referral because at the very least, you will get advice about how to help improve your son's muscle tone and core strength. A lot of the exercises are also good from a sensory point of view.

tabulahrasa Wed 24-Nov-10 13:18:52

My son has Asperger's syndrome, hypotonia, hyper-mobility and a speech disorder - he's 14

he's never going to be an athlete or an artist and his handwriting is completely illegible, lol, he still can't quite tie laces and he's not the daintiest eater,he's had physio and occupational therapy and yeah it made a difference but he's still floppy and bendy, lol

but...I buy him slip on shoes, he types instead of writes and he's fine

the big picture is that no-one's children turn out how they imagined them to be

give yourself a break - I know lots of parents who didn't notice anything until their children started school, so you're already ahead of a lot of people

MedusaIsHavingABadHairDay Wed 24-Nov-10 16:32:00

Another with ASD and hypotonia here..

Like Tabulahrasa my son will never be an athlete. he looks like Forrest Gump on the move, wears splints on both legs as his hypotonia has trashed his feet and ankles, uses a wheelchair occasionally , can't tie his shoes and can't write much at all..

But he's ok you know? 13 years of therapies and yes he has a disability, but he can walk and talk etc.
My son's hypotonia was pretty bad when he was small and he was tested for all sorts of scary stuff, but there are a LOT of hypotonic children around and the vast majority are just that.. a bit floppy!

Step away from google.... and be kind to yourself. It's a grieving process (and one we never quite finish I dont think) but it does get better.. it gets sort of ok...

justsmileandwave Wed 24-Nov-10 16:57:46

Will not add to the fab advice. But to say DS was rejected for portage as he went to nursery. But i rang then myself and got them round to visit ds and we got portage shortly afterwards, glad we did. One thing i've learnt which i have always hated is to ring and ring and ring again.

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