Feeling lost :(

[kathw1980]

My son who is 9 has been diagnosed with both austism and dyspraxia and i'm feeling so angry and i'm hurting I feel like someone has ripped my heart out. I always knew he was differant and very challenging but I thought he would grow out of it. I pushed for both the assesments thinking they would say it was all in my head but that didn't happen! I feel so depressed all the time I just don't know how to snap out of it.

His dad is in total denial about it and I can't talk to him. I think i'm losing my mind and just feel like packing a bag and leaving. I'm sorry if this offends anyone as I promise you that isn't my intention as I know alot of you have much more to cope with than me.

I just don't understand what I did wrong I didn't drink or smoke in pregnancy and follwed all the rules on what not to eat. I tried to do everything right so he could get the best start but something has gone horribly wrong and I just can't work out why. :(

It probably took us a year to reach equilibrium with our family pos-dx and we're pretty fast movers.

I'm sorry to hear your news. This is the absolute worst bit but as you become knowledgable about the difficulties and the future and how you can help it will get a lot easier.

You have imagined incredibly well, as has your ds to have got to the age of 9 without any specialist strategies, support or input. That is a real positive. You have managed to unpick and undo lots of difficult locks in your child's potential. Now you have signposts and soon you will have keys.

You HAVE done everything right and I should imagine that despite his difficultes he HAS had the best start. If you need space find a way of taking it. The fear of the unknown can often be far worse than the reality. Try not to despair!

Hi kath. It's easier for dads to be in denial as they don't (usually) spend as much time with the dc. It's very hard to deal with that the same time as the shock / guilt / upset. My DH does understand things eventually, but usually not till I've seen and coped with the problem for a long time. So I do have his support, but still can't talk to him properly about the issues iyswim. That's why I come here! (new name but not new poster)

Your ds may not grow out of the asd and dyspraxia but he WILL grow and flourish despite them. So don't pretend you aren't grieved, but don't give up hope. You have the diagnosis now and it's your passport to the fertile land of make-things-much-better-for-dc.

Hi thanks for replying. In school he has an iep and gets taken out of lessons for 1 hour a week to work in a small group with the school senco. This has been happening for the last 2 years.

The school told me they were concerned about him but basically told me it would be better for me to get him seen myself as apparently it would be quicker! I honestly thought that he was just a slow learner.

I had no help from the school at all so I started off at the gp's and she referred him to a pediatrician who then referred him to an occupational therapist which we had to make a 280 mile round trip to see as we don't have one in our district. To be honest the dyspraxia hasn't hit me that hard as I found it easier to do practical things to help him like getting him clever cutlery and velcro strapped trainers and lots of other little things like that. But there is nothing I can do to help him with autism.

It has taken well over a year to get him diagnosed although there is just 4 months between his diagnosises. He seen the pediatric neurologist beginning of dec then we were called in 5 days after the appointment and told he has a diagnoses of autism and has been placed on the autistic spectrum.

We have an appointment to see the pediatrician at the end of the month to talk things through and to ask any questions. I will prob forget everything I want to ask though once I get in there.

I feel like this and have no diagnosis for Scallypants though I feel it's coming.

Just the realisation that something is not right and that he's not 'normal' is hard to bear. Infact I was saying exactly that a few hours ago to the head teacher, he's my baby and you want a 'normal' baby with a good crack at an easy life, you want what is best for them.

It's not the end of the world I know that and really you know it too... with the right support they will get through and as their mummies we will fight for them to get it because it's what we do.

Write questions down as you think of them and then take a list with you x x

Hi Kath,
It's always a huge shock to get a diagnosis.

I'm on the autism spectrum and I'm dyspraxic. I'm also a mum and have a job I love and friends. There's lots I can't do, but I found plenty of ways round the problems, and help explain what my life is like to others and what can make a difference.

Autism is a different brain design from birth, in which some bits of the brain end up with too much wiring, some with totally excellent amazing wiring, and some with hardly a wire to be seen. A real mixture of good, bad and indifferent.

It doesn't seem to be caused by anything a parent does or doesn't do. They have no clue why some brains end up differently designed to others.

It has advantages and disadvantages, they've found. Generalising, though we can't 'see' people's body language or hear their tone of voice...and we need to know what each day's plans are....and often we have sensory differences....we also have eyesight and hearing that can pick up three times more detail that that of the average person. And we can be ten times more accurate in our work. We also tend to be very persistent, very careful with detail, very honest.

As children we are very eccentric or bloomin' hard work, (until the right sorts of support are in place) and it can seem like it will be that way forever. But 9 out of 10 children on the autism spectrum are able to go on to lead good lives, with the right support and social skills training etc.

There's lots that can be done to help a child with autism. The local autism charities are a very good way to find useful info, good support groups etc. Or look online for the National Autistic Society - their website has loads of useful info and links to services.

Many lovely people here who do fantastic support.

Hi Kathw
Just a wee note to check you are claiming DLA for your DS?
It's a totally normal reaction to feel grief, anger and fear.
It does get better though! Now you have a diagnosis, you can make sure all the proper procedures are in place to help him have the best education.

Hi Kath . My son was also dx'd at age 9 with ASD and he was dx was dyspraxia a year later, so I understand what you say about what a surprise it can be. They are both developmental conditions, probably genetic and it's nothing to do with anything you might have done during pg.

There's a huge amount you can do for your son though, he might have a different future from the one you imagined but as amberlight says, most children with ASD can do well, with the right support. You've already started putting that in motion by getting him dx'd and adapting your lifestyle to accommodate your son. It's not true that there's nothing you can do to help with his autism - there are lots of strategies you can use as a parent and there are some excellent books/courses which can help you learn them.

The NAS run courses for parents of children with a new dx - check here to see if any are running near you. It was especially helpful for me to meet other parents face-to-face and hear the same experiences that I'd gone through.

Welcome to the board. It's a shock for us all and we can all understand what you are feeling. However you are wrong to say there is nothing you can do for autism - there is no cure but like the dyspraxia there are lots of strategies you can learn to work round the problems. The hard bit is not knowing how far your child will get. I approach it as assuming DS can learn anything until the experts prove to me he can't. So far there is nothing he has not 'got'. It all takes longer and is more challenging but we get there in the end. Take some time to take it in then start posting threads on the specific problems your DS faces and you will get lots of good advice on here. You probably want to think about a statement of sen fairly soon because it can be harder to get after transition to secondary. Also 1 hour a week from a non specialist is not enough. Often with autism it's not that they cannot learn - so seem slow -but more that we are not teaching in a style that suits them and not putting in the hours to tackle their delays. Typical children learn from the minute they wake up from watching the world around them. My DS only learns when he is specifically taught something 1:1 so he needs lots of 1:1 and even then he is missing out on hours of learning each day because he is not paying attention to the world.

'To be honest the dyspraxia hasn't hit me that hard as I found it easier to do practical things to help him like getting him clever cutlery and velcro strapped trainers and lots of other little things like that. But there is nothing I can do to help him with autism'

I have to agree with Agnes on this. Autism absolutely has a cutlery and velcro equivelant and there is lots you can do to help. It is a little bit harder I grant you, to find the 'tools' but that is because it is more hidden than dyspraxia, and this will mean quite a bit more research and learning on your part.

Have high expectations. You must have been a bloody fantastic parent to get him this far. I expect some of the 'tools' you have already found but just not recognised. I bet you explain things that are going to happen well in advance for example, avoid certain places when he is with you etc etc. You can take those things up a notice and investigate why he needs to know what is happening in advance and practise doing things where he doesn't know first in a safe way and give him ideas about how he can handle his anxiety about it etc etc.

It's just about expanding on the parenting you have already become skilled at and being a bit more analytical about what YOU are doing to compensate and keep harmony and then testing what happens when you don't then researching other solutions to the problems than your compensating iyswim.

It sounds a bit wooly what I am saying but I promise there are plenty of structured and scientific way of breaking down skills and building them back up again in a logical developmental sequence that will help your ds.

Read all you can and stay close to MN and hopefully you'll see soon enough that there is every reason to be optimistic.

Oh and if you don't already have one, think about requesting a statutory assessment.

Having a statement will get you into your mainstream state secondary school of choice.

Hi, Thanks to everyone who has posted advice and support it really means alot to me :).

The pediatrician did mention dla when we went to see him after the dyspraxia diagnosis but said we could talk about that further at our next appointment which will be at the end of this month.

Also with the statementing we have been waiting to see the educational psychologist for 11 months so far I don't know why it's taking so long :(

One of the things I find really difficult is not being able to just go to the park after school or go shopping which I admit I avoid taking him to anything like that at all costs because of how much he clearly dislikes and boy does everybody know it! I have had alot of stares off people and have been asked on one occasion 'can't you control your child?' He cannot cope in social situations at all.

This wouldn't be a problem if I didn't have a younger one who has absolutley no problems at all and is highly sociable and begs me to take her to the park all the time. She misses out on alot and I feel really bad for her.

Trust me, put in a request for a statutory assessment and the educational psychologist will appear as if by magic within 6 weeks.

Look on the IPSEA website for the model letter.

Hi Kath,

Ideas that might help...

Going to the park after school - this is tricky in winter when there's so little daylight and you kind of have to go straight away...but we get so exhausted by the school day and the continual social and sensory stuff that we are totally unable to cope.

But....we can often cope after a break with as little noise as possible. If there's a way to collect us from school really quietly, almost no talking on the way home, let us retire to the quietest corner of the house and just 'be' with our favourite things, then we can get enough energy to tackle the park.

The way I'd do it with ds was to plan the day in advance with him, make it really clear that he was having a break between school and park, then he could know what would happen and be able to cope better.

Likewise with shopping - those shops are the ibiggest sensory nightmare imaginable for s. It helps to be able to go when it's very quiet, and to take with us something that we can focus on (I make up a visual 'checklist' for children of the things you are looking for in the shop so they can help match it and tick it off). Other possible ideas - Use baseball caps or sunglasses to make the light levels less for him, use a thick coat or jumper as a comfort-factor for him (we often like the feel of being enclosed - it helps settle us down).

What's it like? Imagine being in your living room and switching on every radio, tele, DVD, computer speakers etc all at the same time, at full blast. And then putting flashing strobe lights in every corner. Then imagine you're also covered in strongest perfumes and bleaches and every other smelly thing in the house (which is how it smells if someone has ultrasensitive sense of smell). Then imagine you've pulled on some clothing made of barbed wire and really rough sandpaper, which is how a lot of clothing feels to super-sensitive skin.

Now try to have a conversation with someone and see how long you last. For many of us, that's the way the world feels to us, and the reason we panic in shops and social groups - the 'volume' of it becomes unbearable.

Thinking all the time 'how can I make the rules clear and how can I make this as quiet and low-sensory for my dc as possible' really can help us.

I would agree with others about pushing for a statutory assessment. You don't have to make the request through the school or ask their permission, just write a letter to your LA (using the model on the IPSEA website).

As I mentioned earlier, my DS was dx'd at age 9 and I requested a statutory assessment soon afterwards. But it took nearly a year to get his statement after that, plus a tribunal to get the secondary placement we wanted. It takes a long time to go through the system (as you've realised) but you can speed things up by taking charge of things as a parent.

Similarly, you don't need the paed's permission to apply for DLA. You can fill out a form yourself by phoning them and fill it out using a guide from Cerebra.

I would also think about getting in touch with social services. I'm in the same position in not being able to take my son out to certain places but there's a short breaks playscheme where he can play supervised by staff who are trained in ASD. There may be something similar in your area, SS are in charge of allocating places.