Newbie

[peainapod]

Hi guys, I've come here after being told this place is great. My daughter (17 months old) had an assessment 3 weeks ago because she wasn't reaching her milestones like she should have, and we were told that she has severe learning disabilities (maybe one day she might progress to moderate learning disability) and very strong indicators of autism (has never shown affection, never puts her hands up to be picked up, won't look at people in the eye, and loves being repetitive and getting fixated). We were told that she'll be in nappies a long time and won't walk or talk for a long time.

Have to say I was completely shocked and devastated The worst I was expecting was (the health visitor told me) that she would get certain toys that would encourage her to catch up !

We're now waiting for her report to arrive in the post (I was told by doc 10 days but surprise surprise its taken more than 3 weeks !) so we have have a more detailed explanation because as you can imagine (as hard as I tried) I couldn't seem to take everything in at the assessment and it was all a bit of an information overload.

She's been referred for blood tests (I'm assuming to check for any underlying conditions or other conditions ? I've been told its not uncommon for children with certain disabilities to have other problems too ?), she's also been referred for 2 tests on her genes, one was called the fragile x syndrome test and I can't for the life of me remember the name of the other one ! She's been referred to speech and language therapy too and also to a special needs playgroup (well we're on the waiting list ! Will probably start here in about 4 months).

If anyone has been through something similar with their child and could let me know what to expect in the next year or so, I mean I know to expect a whirlwind of tests, assessments and appointments, but any more detail of what happens in these appointments or what the outcome could be it would be great. I know every case is different because of how broad the spectrum is but any info will be helpful.

My brain is practically fried from reading and reading and reading about learning disabilities and autism I thought it would be nice to speak to someone who has or is actually going through it too.

Thanks for reading guys

[Beebee]

Hi and welcome

Bless you...i can sympathise with you enourmously. It can be so daunting and overwhelming to be told all of these things, especially if you were not expecting them.!!

You post reminded me of my experiences with my son J many years ago. He was originally diagnosed as having 'hydrocephalus - water on the brain'(wrongly) and he too was tested for lots of syndromes including 'fragile x'.

After many years (long story..!!)J was diagnosed with Aspergers Syndrome last July. He is now 16 and a lovely 'quirky', articulate and caring young man.

If i could give you any advice i would say to note down all isuues and concerns and try to deal with/have them dealt with one thing at time. Thinking about everything at once is just so overwhelming. Also take each day as it comes (easier said than done, i know!!)and try not to think too much of whats to come or what the future holds.

From personal experience i have spent many days of anxiety thinking of 'what ifs' and trying to imagine how things would 'pan' out..!!

Its impossible to predict a child's progress and your daughter is still very young...she may well suprise you with her abiilities in time..!

Please feel free to message me if you wish. 'Here' is a great place to be and it's such a great help to know your not alone.

 

Once again - WELCOME..

 

Bee

[peainapod]

Hi Bee, thanks so much for your reply, it feels great to know that I'm not alone, and I'm really glad I've found somewhere to come and share what's going on and have advice. I would give anything to zap myself forward 6 or 7 years to see how things are !

I know this will be a long process, its just killing me all the waiting. That's great about your son, I love hearing about children that don't let their disability get in their way, its an inspiration.

My little girl doesn't talk at all, she can't even get one word out yet, and I'm no doctor but for some reason I can't imagine her talking. Does that sound strange ? I hope I'm proved wrong !

It also kills me that she doesn't show love towards me (don't mean to sound selfish), I would just love for her to cuddle me or reach for me or kiss me (this has never happened).

One thing I'm happy about from all this is her relationship with her sister. Her sister is 3 years old and she loves her, well they are both obsessed with each other to be honest but nobody brings her out of her shell more than her sister. The doc told me that its likely she'll be fine with her sister or a small group of close people, so I'm glad she's got that with my other daughter A. She always seems very much in her own world, or lights are on but nobody's home but when she plays with A, just for that 5 mins or so it seems like she's actually there and interacting. Maybe A will be the key to her progressing, and I'm very lucky that A is very loving towards her sister.

Can't wait for this report to come mind, I just need to know where I stand and what to do next to help her. Nothing happens fast enough for me lol

Thanks again for taking time to reply, it means a lot

[Lynden]

I'm always bewildered when parents get such negative feedback at initial meetings. I think yes, you need to be realistic but I don't think, especially with something like autism, doctors can say what your child will or will not do in the future.

 

All the tests that are being done are normal, especially if they are looking at possibly autism. Because there is no definitive test for autism yet, they tend to rule out all other possibilities first.

 

My son was diagnosed officially with autism and severe learning difficulties age 2 and 2 months (in the system from 15 months). He did do everything late, didn't touch solid food till gone 15 months, didn't walk till he was 3, didn't say a single word till he was 6.5, learned to use a fork aged 7 and is still in nappies at nearly 8, but he is doing well. He talks non-stop, he's reading now, he's actually almost accessing the national curriculum for reading. He is still very autistic, and still has learning difficulties but he is a vastly different child to when he was diagnosed. He's an incredibly funny, loving little boy. We are at the opposite end of the spectrum to you in that respect - he doesn't understand personal space when it comes to me and him and is overly attached.

 

We have the same age gap as you between his elder sister and him too and I have to say she is fabulous with him, and he adores her. He has often done things for the first time under her guidance She is incredibly tolerant and kind. We do make sure that she knows that's not expected and that we give her individual time as it's easy for the sibling to take a back seat when you have a child with severe disabilities.

 

He is also in an amazing school - I can't credit them highly enough and he has come on in leaps and bounds since he started there. We also, as a family, have tried to learn as much as we can about autism and how to help him so he can access learning and can access the wider community. We've also done autism specific parenting courses to help us with any issues that might arise too and I think if you get the opportunity to do so they are incredibly useful.

 

Good luck with the diagnosis.

 

Lynne

Edited July 29, 2011 by Lynden

[peainapod]

Hi Lynden, thanks for your reply ! It's really great speaking to people in the same boat, or yourself who seems to be in the exact same boat ! Its great to hear that your son and his sister still get along great and that she still helps him, I was worried that this relationship my girls seem to have would fade or that she would get fed up because her sister is slower than her but this gives me hope !

Thanks

[Beebee]

Your most welcome.

Although it may seem bleak at the moment, things do get better.

 

I can also add, having worked with children with 'special needs' for the last 10 year's - that they DO progress, it just takes them that little bit longer and with a liitle more help and support.

 

I have worked with some lovely children who didn't engage with the world around them when they first arrived, no speech, no concept of the world nor affection towards the people around them. However i can say with great pleasure and admiration that with the right support, professional input and overall with patience, calmness and kindness that those children have 'learnt' their own ways in which to engage with others and the 'big, scary' world around them.

 

I can totally relate to your comment about being able to 'fast forward a few years', as i too wished i could do that.

 

There are so many lovely 'quirky' children out there who become great teenagers and adults and although thats a long way of for you, take heart that there are many of us in the same situation who can help (i hope.!!Lol) with advice and support. I know i have found 'Here' a great place to come when i've needed advice.

 

I try to remind J that his Asperger's add's to who he is and that without it he just wouldnt be the same 'quirky, funny' young man he is and that i'm proud to call my son..!!

 

Keep smiling..!

Bee

[Aginoth]

Hi peainapod, glad to see you followed the link from MSE

[peainapod]

Yeah I came on here a while ago but I think it took a while to process my registration, it wouldn't let me post anything for a while. Thanks for the link, I think this will be a great place for me

[smiley1590]

i think it positive step to get your daughter's development milestone delays - speech and language etc looked into as the earlier the better the 'outcome' of support will be put in place to make sure she isn't let down failed and will understand herself better her identity of who she is where she fits and why may struggle find things more challenges and more 'obstacles' will be set of her but she will have the knowledge and information there to guide her through more smoothly then finding out later on which is harder to process swallow the information details of living with these difficulties head on day in day out it may help her self esteem/confidence and may just grow up with it not knowing any different ....

 

it won't be such a shock to the system for her which is a bonus! the more input she has now the better her 'chances' of progress,improvement and opportunities which is all possible if the structure/framework of services/teams are in place ready from the beginning!

 

have you looked at the NAS website for more information for parents? just incase it does turn out to be in the autism spectrum direction you then have more ideas and details on how to go about processing digesting everything!

 

XKLX