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Where to go from here ?

(10 Posts)
brodiemummyof5 Sat 26-Oct-13 19:07:55

Advance apologies for the length I know this post is going to be...............

I shall begin with a little background information on my family...........I am the mum of 5 wonderful offspring........dd1/23yrs.......dd2/21yrs.......dd3/10yrs.......ds's / 5yrs twins.........
All have gone through childhood into adulthood (the older ones only obviously) and through the education system with no problems and excelling in their favoured subjects and pastimes so I am now reaching out for advice and support from a community I am so hoping can understand my concerns on a practical level (although a little emotional level would also be appreciated lol)...........

Since having my twin boys 5 years ago we have watched them grow as with all my dd's , pretty much sleeping through at around 6 months, day potty trained by 2ish and have been nighttime dry from about that same time but after the age of around 3yrs we felt that our younger twin (only by 50 seconds) despite being the first to walk at around 12 months just didn't seem to be progressing in the same manner of his twin and older siblings, we mentioned this to our health team and a health professional was sent to monitor him in a small informal atmosphere and came up with nothing but to maybe get his hearing checked............having had his hearing checked he was diagnosed with glue ear and after a year or so had grommits fitted so we (and I'm hoping it's quite normal to do so) put alot of our concerns down to this.........however, along the way we are noticing new issues and an increase in severity of existing issues...............
In reception class last year he was an average school child with reading, maths etc on his report apart from his social and interactive skills, which although were not of a major concern were still below expected, which of course rang alarm bells for us but his teacher put it down to the glue ear and being shy! But after the summer break and his start in year one we are more than convinced that our gut instinct is correct..................
We have researched on the internet but we have found that one symptom resulting in a possible diagnosis is immediately cancelled out by another symptom totally unrelated to our ds.........
I'm now going to list all our concerns (well what I can remember although I'm sure there are many more little things) in the hope that someone can shed some light on our situation..........

One of our main concerns at present is the way he needs to lick things......tv, his siblings, the car, lampposts and many more, he will have several days when he will do this maybe 2 to 6 times a day then not for a week or so.........
He chews, mostly clothes, watch straps and some toys, but again not always............
He worries about the most amazing things out of the blue......e.g. he was in tears the other morning on the school run as he didn't want to grow up and wanted to stay at school forever and mummy and daddy will buy his shopping forever, even after I tried to console him he was so upset and concerned same as one night we were happily putting them to bed and he asked if I was going to die and after comforting in the best way I know possible he then went on to ask if nanny was going to die!
At night he has to be completely tucked up in his bed and if it comes loose in the middle of the night he will come to us to be tucked in again, he also has to have the bathroom blind completely closed......
He likes to sit very close to the tv and becomes very mesmerized when doing so..............
He shows OCD behavior on several things, what immediately springs to mind is our downstairs toilet door........every time he passes it he has to straighten it open to an exact position , almost like he is mesuring up an important building job and at night he will spend a good few minutes positioning his pillow by a fraction of an inch............but I hasten to add we have a struggle every time it's wash or teeth brush time and have to make him wash his hands after the toilet.............
At school (we know this from our 10yr old ddi) he plays alone, not sitting with a sad face in the corner but running around amusing himself, but on his own...........
Finally I will mention the fact we have just returned from a lovely family holiday in Tenerife and he spent hours dressing up in everyones shoes and clothes and when in the pool spent most of his time wading through the water watching the ripples in his wake...............
I hasten to add that he is a very loving givng child and apart from getting hImself in a complete tizzy over what seems to us nothing he is not in general a violent or abusive child

I hope there is someone who undestands that I'm not just an over anxcious parent comparing twins as I have older children also and I'm open to any questions you may have in my quest to do the best by my ds
Thankyou x

brodiemummyof5 Sat 26-Oct-13 19:11:45

Can I add that to the outside world he appears to be an average, all be it hyperactive 5 5r old x

Jacksterbear Sat 26-Oct-13 20:20:01

It seems to me there are lots of possible sensory issues on your list of concerns. Have you looked into sensory processing disorder, as well as autistic spectrum disorders?

Jacksterbear Sat 26-Oct-13 20:39:40

Re what to do, I would consider taking your list of concerns to your ds' GP and asking for a referral. It's worth reading up as much as poss beforehand on eg SPD, ASD, because it will help you find the right language to explain stuff and might well make you recognise as possible symptoms things you hadn't even noticed before or thought were just funny quirks.

I would also speak to his class teacher at school to find out if he/she has noticed any of the same things that you have, and whether there are concerns about his behaviour/progress there.

brodiemummyof5 Sun 27-Oct-13 10:30:28

Thanks, Jacksterbear and yes, we called to make an appointment but our gp is in semi retirement so have to call back in a weeks time for appointment but we will wait as he is an excellent gp..........
It's just so very hard to know what to do for the best as on the one hand these things are not constant and as far as we are aware (and we'll find out more at parents evening in a couple of weeks) these things have not been picked up at school but on the other hand we have known for a while that something is not quite right and although we don't want him ""to be put into a box"" we also need help in how to deal with these issues so he can have an easier life!
Now off to read up on SPD and ASD although we become very confused with the latter as it very much points to lack of emotion and ds loves nothing more than a snuggle and kisses.......mind you come to think of it he doesn't like to be hugged to tightly and he will hold your face so he can direct where and how many kisses........not considered SPD so will be interesting, thanks again :-)

Jacksterbear Tue 29-Oct-13 20:54:13

Good that you have a good GP. Re ASD, there are many more knowledgeable than me on this subject on here, but one thing I have learned from hanging out in MNSN is that it can present in many different ways, and eg being affectionate does not necessarily rule it out.

Re labelling, I was hesitant initially but now so glad we have a dx for DS (SPD and anxiety) as it means we have the right support in place. In particular SPD can be really helped with occupational therapy, so getting that dx'd has allowed us to get that in place for him.

brodiemummyof5 Wed 30-Oct-13 19:18:45

Jacksterbear that's exactly how we feel now, time to get on the road to help so he and us can get the help we need and I'm so glad I came on this site before my appointment with the gp as your advice and reading other threads has brought my attention to many possibilities that I had no knowledge of and I will be so much more prepared when we do get our appointment...........

One thing I forgot to mention (although Im sure there are many more) is ds's aversion to sunlight, this became even more apparent on our recent holiday when he would get very upset about the strong sunlight........I know our other dc's were happy to be buying sunglasses but were otherwise unfazed where as ds 2 could not even bare to have the window shutter open on the flight and had to spend the whole holiday (daytime of course) in sun glasses........he is absolutely fine in average daylight but he finds the sunlight very hard........maybe something or nothing???

Mollyweasley Wed 30-Oct-13 20:16:16

I think the most important thing is to follow your gut feeling and your motherly instinct. I did what you are doing now, for 6 years. I was desperate to find help for my boy whose behaviour had always affected the family but was starting to seriously affect his own happiness. I just wanted to understand how to help him. I got turned away by professional, many doors shut and like you the list of symptoms for various "disorders" did not all fit. We did finally get an answer and he was diagnosed with Asperger Syndrome: he has no problem at school, has friends, is very loving, can be affectionate and is very caring. It is very hard for me to tell you from your list whether your DS has a form of ASD because a lot of tests and a trained psychologist need to be involved but I can see why you would start to wonder. Jackster is right, it is important to read about these conditions to be well informed when you face the professionals and I would add that it is important to follow your gut feeling. If you believe something is not right and he needs help then he does. Not all professionals are well informed,keep going until you find one who is. In my experience, it is well worth the fight.

Handywoman Wed 30-Oct-13 20:37:14

Hi OP, I would echo what Mollyweasley says exactly. Bear in mind that conductive hearing loss appears to be more prevalent in the ASD population. You might want to use that nugget of info for when professionals are trying to pin his social interaction on that. It may help you on your travels. Stick around here and good luck

brodiemummyof5 Fri 01-Nov-13 10:47:27

Mollyweasley your situation sounds very similar to our own and having been reading several threads on mn I'm very aware that unfortunately we may have to be very dogged in our attempts to get a diagnosis.........

There are some disorders we feel we can discount immediately as are totally unrelated to ds2 especially some very much centred around temper and lack of feeling etc as ds2 is actually the more amenable of our dc and will on most occasions give in to his siblings, friends, parents etc without a fuss and becomes very concerned, infact overly concerned and very sensitive if someone is upset or hurt but we do seem to be swaying very much towards sensory issues and AS

Thankyou for the heads up on the hearing issue Handywoman

I know I usually put another little quirk of ds2 at the end of most of my posts but I do so in the hope of response from anyone who may relate and the possibility of one of those little nuggets of information...........

Ds2 has very poor/short concentration skills, his drawing/colouring skills are very immature and although he will begin a colouring with concentration for the first five minutes it will soon descend into a chaotic mass of scribbles more akin to a 3 yr old but there are 2 things that really stand out, the first is that most pictures are coloured in one colour and second, he just can not stop himself from scribbling on his siblings drawings, it's very clear to us that this appears to be a need to do this rather than just naughtiness and we can almost see in his mannerisms the struggle he has not to do this and he becomes very frustrated if we restrain him from doing so e.g. holding his hands.

So if there is anyone who may relate to this and also could I ask if anyone knows the author and correct title of the book "out of sync child" not sure if that is the correct title but I can't wait to read as I think it may be very appropriate to our ds2

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