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Information overload and feeling a bit depressed and scared about what's to come

10 replies

JackJacksmummy · 01/01/2012 22:59

Hi, I have only been posting here since Friday but have spent a lot of time researching ASD and what my 5yr old DS could possibly have and the more I read the more I realise that he definitely seems to be somewhere along the spectrum.
DP says you shouldn't read it from the Internet because technically everyone could be classified as being on the spectrum somewhere but my argument was we have accepted DS's quirks are how he is but seeing them written down in black and white highlights and reminds us of the things he does that we take as normal but really it isn't.

So this week I think I am going to speak to his teacher, and the schools SENCO and also arrange a doctors appointment - taking along a list of things he does because I know talking about it will be hard.

How long do you estimate it takes to get some kind of diagnosis? I don't want him to be "labelled" but if it gets him the help he needs then obviously I'm not going to hold him back.

Also how do I tell friends and family that he is being assessed for ASD without sounding like a neurotic mother who just wants a label to excuse her child's behaviour- obviously this not my opinion but I know plenty of people who have said that to me random conversation- granted they are ignorant and I'm better off without them as friends but what if some of those turn out to be family?

I'm sad for my sons future, sad that he may never make 'proper' friendships, that makes me really sad actually. I know ASD kids bring a lot of happiness and joy and even now I wouldn't change DS because things would be a hell of a lot more boring in our house!

One other thing - does anybody else hate bedtime? I do because he has no fear and would happily jump off his brothers hi-sleeper (have persuaded DP that DS1 needs a normal bed this month so DS2 won't be tempted to
jump) or that he will tangle himself up in the blind cord (which every night religiously wind around the curtain pole and lock it up there but doesn't stop me worrying about it!!)

Sorry I've written loads and I've done it on the mumsnet app so can't check back what I've written so will leave it there for now!!!

OP posts:
popgoestheweezel · 02/01/2012 00:15

I know exactly how you feel about the information overload, it was just the same for me when the penny finally dropped about my ds (5.8).
Like you, we had accepted lots of ds' foibles as normal when they really are not. I recently told a few friends that we were having ds assessed, thinking they'd all say 'oh, I'm sure he'll just grow out of it etc etc' (which I have heard a lot I think it's misguided politeness) but they were not at all surprised which made me realise that there is something quite different about him.
We haven't told that many people about getting ds assessed, but neither are we keeping it secret, I just tell them if it feels right at the time. We haven't even told dh's parents yet but I have been preparing the ground a bit so hopefully it won't come as a shock when dh is ready to tell them.
On that point, dh's in general ime are much more likely to dismiss the idea of something being 'up' I don't know why but they seem to need a lot more time to get used to the idea. Remember to take your time to process it yourself though, information is very useful but if you take too much on board at once it can overload you.
It is quite scary and daunting but you are doing the right thing by pursuing an assessment. If he is nt (neurologically typical) then they will just reassure you and send you on your way. If he does have any issues then they can be identified early and he can get the support he needs.
In terms of timescale this will be a marathon rather than a sprint. We started on this path last march and we are still miles from a diagnosis (dx), but that is not necessarily typical a lot depends on the area you live and how clear cut the issues are.
Is your ds in reception or yr 1? Our experience was that we have been brushed off with 'hell grow out of it' from school all through foundation and they have only just begun to accept his social issues now. Unless your ds is causing real problems at school I wouldn't expect them to be too pro active. I remember expecting them to do stuff when we said we were worried but they just gave us some guff and sent us on our way.
Mumsnet has been a lifesaver for me and has been the source Of so, so much useful information as well as moral support. Don't forget there is literally tons that can be done to help your ds no matter what his issues turn out to be, and most importantly he has the one thing he really needs- a caring and pro active mum.

Triggles · 02/01/2012 00:21

I don't necessarily hate bedtime, as we don't have a hi-sleeper or blind cords in DS2's room. His window double locks though, to keep him from opening it. He has ADHD/DCD/ASD, as well as sensory problems, and is very impulsive and excitable. So nothing like that is safe around him unsupervised.

As far as worrying and reading - I won't tell you to stop, as if you're anything like me (and many of us on here) you will still read up as much as you can.

Yes, family can be a mixed thing - some are supportive, some may not be (to varying degrees from confused to downright aggravating).

The biggest thing is just to take it as it comes. if you have a good circle of friends, don't allow yourself to become isolated from them. It's very easy to slowly isolate yourself from others, and it only makes everything more overwhelming and difficult to cope with.

Diagnosis for us took approximately 10 months, but they are still doing ongoing assessments in some areas. Sometimes it takes less time, sometimes it takes more. It all depends on the area, the professional, the child... all sorts of variables. Don't worry overly much about labels - support should be based on care needs and difficulties, not labels. Your DS is still the same boy he was 6 months ago, this will just allow you to learn things about how him to help you communicate with him and make things easier to him to cope with.

I'm sure there will be more along that have more helpful info - that's really all I can think of right now.

Welcome!

coff33pot · 02/01/2012 00:49

OK..........firstly changing the bed? great idea. Get rid of the blind and put a curtain there and that will stop you worrying about the cord :)

Next.........family. Tell them when you are ready. Personally I would wait till you have had a couple of appointments and spoken to a few proffessionals as that will add weight to the information you are about to give them. It is always better having it all straight in your own head first before trying to tell others that dont have knowledge on this kind of thing. Also be prepared for the "oh he will grow out of it" type of talk as its the first that comes out of many families mouths :)

Next................WHO says he wont make true friends???? He may not have hundreds but he just might find that special one :)

It could well be harder for him yes and he may need help to learn social skills and reading body language maybe but it doesnt say anywhere on the net that he WONT make friends :)

Initially yes you read up allsorts on the net and worry yourself sick, then the feeling down bit comes along when you look at your lovely child and wish you could take this away, then the worry of the future. ALL this is understandable and I was one that did it too x

BUT the best way to research I found is yes read up and understand all aspects of ASD you can in order to make observations and lists to help your son get a diagnosis if needs be BUT ALSO read up about therapies and interventions I can try at home NOW to help him. Things you try at home and work keep a diary off, you are able to pass on to the school so they could implement them as working together is vital and good if it can be done. I keep my expectations high of my DS, have aims and goals just like I do with my NT children. I know he has limits and the internet has helped me understand that you have to be more patient and understanding but that doesnt mean my DS wont get there in the end.

I guess I am saying read the next from a positive rather than a negative xx

coff33pot · 02/01/2012 00:51

read the net even LOL

AgnesDiPesto · 02/01/2012 17:42

DS got a diagnosis in 3 months but he was younger, more severe and had regressed. It took another 18 months to get decent support and intervention in place so don't feel you have to have a diagnosis before you can access help.

I would speak to school / SENCO as they may know about strategies already for ASD, or can find out / access support and any additional understanding at school can only help. Some ASD outreach teams will come in straight away but in some areas they will only come in once you have a diagnosis.

Tell family when you are ready. Family aren't always ideal in the initial stages as they have so much hope and expectation tied up in your children and can often go into the same denial phase you are just emerging from. My best confidant was a mum at school who when I said I was getting DS investigated just said 'why do you think he might have asd' and let me explain and just listened; instead of everyone else who said 'it can't be asd because....' or 'but my child does that too' or 'I heard of a child who didn't speak and then at 3 they spoke in sentences'. People don't know what to say and often are very dismissive because they can't cope with the subject matter. Sometimes you actually have to say (as I finally did to my mother) I don't find that helpful, I actually just need someone to listen to my worries. You find you become more thick skinned and tolerate less BS once you enter SN world. Sometimes you need to tell people how they can help you as actually thats what they want to do not make a hash of it.

You can ask for an occupational therapist to visit and assess safety and advise - usually the OT attached to social services not NHS (ie via social services disabled childrens team). You are entitled to a social care assessment for yourself as a carer and your child - that does not mean you are entitled to services, but you are entitled to a proper assessment (although not everyone wants social services involved and some have negative experiences, but our SW is great). Some hospitals have a community or learning disability nurse who can help with home issues eg safety, self care etc

My DS (now 5) is learning to be more social. He does not just pick it up, but it can be taught. Sadly I have yet to come across a mainstream school that has any proper training in how to teach social skills for asd, which is not surprising as its not part of teacher training, but you may get told that a weekly social skills group is all that is needed (as usually that is all they know how to do). Its not. You need to work on social skills every day.

DS does ABA (applied behaviour analysis) and they are great at teaching him to be more social and work with him at home and in school and support him in peer groups, playdates etc. Like you I didn't believe being social could be taught, just thought it was how DS was and we would have to accept it, but it can. It just has to be broken down and done in a really fun, systematic and rewarding way. I can see he is changing and much happier too. He is much more social with us, a very different child. The children at school are great with him, it helps that they understand he is different (he has speech delay) and that he struggles socially and they go out of their way to look after him. To his brothers disgust he can often be seen in the playground with two girls holding his hands dragging him along to join in. I wouldn't say he enjoys it yet, but he tolerates them and is beginning to initiate interactions with other children having blanked them up to now. We try and pair his favourite activities with other children so he builds positive associations between the two. I know that becoming more social is going to make him happier long term but it will take time and lots of work, its not going to just happen.

Diagnosis does not necessarily bring great swathes of help. You may find it just brings lots of professionals with very limited time and resources of dubious quality and effectiveness. Thats not to say don't go for a diagnosis, but its not a magic key to help. If you don't get good quality asd outreach straight off and can possibly afford it (and claim DLA, charity funds etc if necessary) try and find a good ABA supervisor or private ASD specialist speech therapist to help with social skills or read up on it yourself / look for courses. Then you can start putting in strategies now, even if its just at home / having children over to play after school in a more structured, focussed way.

There is a lot you can do to change the outcome. But the earlier the better, not least because at age 5 all the other kids are happy to play with DS and help him / make allowances and their play (boys in particular) is not very sophisticated but I am guessing that isn't going to last into juniors so you want to take advantage of the age of the other children and play based curriculum while you can.

Its tough finding the right help, but once you do you will feel much better as you will see things improving. My DS is quite severe ASD, but bright. With the right specialist help he is doing great and I feel really positive about his future. Our challenge for this year is to hold onto the support as the LA want to cut it to save money and put the once a week non specialist input back in!

You will find great support and advice here. Its been a total lifesaver for me at times.

WannabeMegMarch · 02/01/2012 18:04

I wont add loads as I would repeat a lot of what others have said. But I did read a lovely quote that has stuck in my mind.
It was that children on the spectrum are''exquisitely sensitive and inherently gentle''.
To me that sums up the positive and negative sides of ASD.
I would also re-iterate what someone else here said that it may be wiser to keep this to yourself until you have got your head around it. Labels are very easy to adhere and tricky to remove.
(I thought I wouldn't have much to say but) Remember that regardless of what number or seniority of professional you encounter, no-one will be an expert on your child but you. Each child on the Spectrum presents with their own unique quirks and picture.

StarlightMcKenzie · 02/01/2012 18:06

To keep yourself sane make a log.

Keep a log of the date, contact, job title and description of conversation with quotes if you want. This will mean that when you are chasing (and there will be chasing) you'll be able to say 'I called on x, on y and left a message on z', or 'on the 7th Jan, at 3:40 on the phone you told me that I wouldn't have to wait more than two weeks, well it is three weeks now.....'

That kind of thing. Also, log websites, books, information, contacts that you think you'd like to explore but just don't have the time yet. Keep them in your log too so you can go back to them and you don't feel like you have to do everything at once.

Don't be overwhelmed. Don't panic. But do keep up a steady pace. There is lots to learn. The most important lesson being to always evaluate what you are being told, or what intervention you have been given to establish whether or not it is effective or worth the effort of chasing/getting/attending. Sometimes you can be so grateful 'something' is being done that you forget to assess whether or not it is any good. Sadly, often it isn't appropriate for your child, even if it is for others.

HTH

IndigoBell · 02/01/2012 18:14

And, a label of ASD does not tell you what he'll be like in the years to come.

He very well might have friends, a wife, kids, and a great job.

It should however help you for the next few years.

Best wishes.

WilsonFrickett · 02/01/2012 18:49

Just wanted to say hi, there's lots of great advice on here and you said you were feeling overloaded so all I will add is:

IMO the diagnosis stage (is there something wrong? what is it? who will tell me what it is? Now what do I do?) was absolutely and positively the worst time for me. It is really easy to get overwhelmed. And then if you get a diagnosis (dx) you get even more overwhelmed because you want to try every possible therapy to try and feel you're 'doing' something.

Try and take ten minutes a day to just relax, put it out of your head and not worry. Star's advice of a logbook is good too. Keep posting on here, the support is amazing. Don't pay any money for anything yet - there's a lot of snake oil out there, you need time to assess. It's easy to spend a fortune with nothing to show for it except a distressed DM and DC. Good luck and remember to breathe!

Ineedalife · 02/01/2012 20:44

I don't know if it has already been said but someone on here said to me to think of a Dx as a signpost to support not a label.

If your Ds has a Dx and needs support the Dx shouldhelp the proffs to offer the right kind of support IYSWIM. If he doesn't have a Dx people including yourself could be going round in cirlces trying to find out how to help.

Also about friends, some children with ASD do have friends, my Dd3 has what she calls friends, they are a quirky bunch mostly with a mixture of disabilities, they are all very fond of each other and rub along quite nicely. At her old school she had only NT "friends" and she found this difficult to cope with as she couldn't keep up socially. Now she is happy with her new friends and has for the first time ever this holiday said she has missed one of her friends durring the holiday.

She has one NT friend who she has known most of her life, they go to different schools but see each other regularly, they get on well and her friend seems to instictively know that Dd3 is different, she is a lovely intuitive[sp] little girl who gets Dd3 and is happy to play the same game every time they are together.Grin

Take careSmile.

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