2 year old flapping his arms and not talking or walking

[malfranco]

Hi Everyone,

Im a newbie here so go gentle and a bloke not a mum but a concerned dad all the same. I have a 2 year old son who has only just started eating proper food after severe reflux for a year. How now the sickness a reflux has stopped I am left with other worries. Logan is nearly 2 and does not say mummy or daddy says no words really. He does not walk or point at things and is about a year behind. He also has some real strange manorisms flaps his arms a lot and wiggles his toes, also his mouth gaps open when doing this or he is trying to put his whole hand in there. This behaviour has been noticed by people and while cute is a concern to me as I feel he could have Global delay or possibly autism. Thing is the paeds dont seem that worried but he is way behind now and will probably be the youngest in his year so time is ticking. Anyone that has any ideas or sugguestions or experiences that might help or explain would be much appreciated.

What do the paeds actually say ? What assessments has he had so far ? I don't want to build up your worries more but I think you should really push now to get some help.

Hello malfranco.

Not pointing at things or bringing things to show you are indeed things which should be taken seriously by paediatricians.

How is your DS's eye-contact and social skills? Does he prefer to sit in front or to the side of you rather than face-to-face?

Does he smile and make eye-contact with people at the supermarket checkout for example? Say hello and goodbye?

Nobody here can or will try to diagnose ASD but there are plenty of people who can give you pointers. When I realised that there might have been more to my quirky, strong-willed, non-sleeping obsessive but high-functioning son I was given certain phrases to use with the HV and SALT which led to a dx.

By the way, of course we'll be gentle here, this is a support forum and a bloody good one it is too. Welcome to Mumsnet

I would ask to be directed to a paed who is experienced in this area, as not all are or they may be junior members of staff. If there are problems you are missing out on a very important window of opportunity to help your child develop appropriate skills, language etc. You may not receive a firm diagnosis as often doctors are unlikely to diagnose so early, my dd was 7 before receiving an offical diagnosis. But you need to be getting approriate SaLT and OT.
Good luck and keep posting.

You need to get a referal to a development paedatrician and hopefully they will run a battery of tests to try and determine what the problem is. It really isn't acceptable that you have been fobbed off. At the very least he should be receiving physio and he also needs to have his feet checked as he may need peidros.

You need to be persuasive and persistent to get him seen and to get him some input. As you know, early intervention is worth its weight in gold in many cases.

Welcome to mumsnet

Thanks for your posts everybody. He is seeing a gastro specialist at bristol next month to do with his tummy and not pooing properly. The initial consolation was for the reflux and sickness which was everyday until by some miracle he had an infection which they treated with steriods and an inhaler hey presto no more sickness or reflux.

However I am now more concerned that they are not getting on with finding what else is wrong. He sees a ot once every blue moon and had his ruth griffin assessment that put him 1 year behind. He is also seeing a physio very wobbly on his feet though. After the assessment she said come back in a year what goods that. He does go to a special tots group on a thursday and has a speech therapist but its so long between appointments and the main focus has been his eating or lack of got really underweight at one point.

Logan will look at you if you sit him infront of you and smiles at people and waves bye bye which is encouraging. Not really interested in books and if you say wheres the car or the monkey nothing is pointed at or for that matter said. Logan does not say anything really except nana for dummy and mama for bottle. He does feed himself but struggles or will not lift the bottle up to feed needs to be laid down and hold it which is a similar problem to the wobbley standing. Need to get his ears checked which is taking ages as well.

What do HV SALT and DS mean? sorry new to this.

Mum wife pretends she is not concerned but I am and very reluctant to start considering another child till we get logan sorted.

Salt means, speech and language therapist
HV mean health visitor
DS means darling son

Could you ask your health visitor if there is portage available in your area? If you google it will give you a description on their website, but it basically regular play therapy (a portage worker will visit your son at home once a week for an hour) It is salt/pohysio/ot/play therapy all rolled into one and is very good.

I understand your concern about wanting to know what is going on before having anymore children. We had chromosomal tests run, an mri/ct scan, eeg and a multi disciplinary assesment. My child was diagnosed with a moderate global development delay at your sons age and we were offered a pre school special school which we took. They have never found a cause or name for my childs problems though. Logan might just catch up with the right help, his delay might be temporary but you are doing absolutely the correct thing trying to get him all the help you can

Hi Malfranco - Your DS sounds VERY similar ti mine at the same age. He was 21 months and not walking, talking, pointing, showing or waving. He also has the arm flapping mannerisms and physical issues you describe.

The best bit of advice I had was from one of the top Developmental Peads in the country (Denise Challis)it was this: EVERY time you give him something tell him what it is. This really helped my son's language development and you may find it useful too...

Hi and welcome to mumsnet

As you've already been given great advice I won't add much.
Firstly I just want to say that you are being a fab parent, go with your gut instinct and push for the help you need.. In my experience no-one is just going to hand it out, so you need to nudge politely.
If your ds is gets assessed and it's nothing you've lost nothing, but if it is something early intervention and support is really key.

I found it really hard to explain what my ds was doing, so I filmed him and showed everyone! it might be well worth filming, catch good and bad times any flapping and at play or interacting in a normal environment. Mobile phone are great for this as you can do it sneakily!

More great advice will see about portage as I have heard about this from other parents.

Will be onto the case tomorrow have already organised the physio for a couple of weeks time. Hydrotherapy is suppose to be very good for stimulating muscles I have heard as well. Logan can go to a few of them if he wants. Must admit Logan is a rather lazy baby and will often just sit where you place him very attached to his dummy and blanket as he has been so sick in the past. Will try the telling them what it is, which seems a sound piece of advice.

We have all the records and medical notes for my wife however not for me as I was fostered at 2.5 years and am a 8th filipino so this does not help when dealing with what could be hammering Logan, my wife is English

Yes hydrotherapy is good, but so is swimming etc. Have you got a respite resource centre close? they usually have a small therapy pool on site which you can pay to use, though they are very limited but sometimes small hotels will let you hire their warm pool for half an hour for private use.

The chromosme tests were run on our daughter, not us. I don't think you need to worry about your own history yourself. My daughter is 'unique'. Nothing has ever occurred like this within our family before (and hasn't since) sometimes it is just one of those things. He is still young though malfranco, anything might happen. he might just be lazy

Hi, I'm lingle,
My DS2 had a severe problem understanding language. I've spent the last couple of years helping him helped mostly by people on this site. I don't know about anything except language/ASD stuff as DS2 has no significant physical problems.

He's August-born so I hear you about the time ticking thing. DS2 started to make rapid progress at 3.0 and is now within spitting distance of his peers aged 4-5. We have managed to start him in reception a year "late". If Logan also goes on to progress very rapidly, this could be an option for you too. The option to year-defer is normal in Scotland.

You sound really switched on. I saw that your wife is in a slightly different place from you at the moment. So my advice would be to buy yourselves a copy of "It Takes Two to Talk" (Hanen) because this is the book least likely to scare her/provoke rows/challenge her, etc (it has no milestone charts, descriptions of syndromes or prognoses)but it will make sure that you both hone your techniques for bringing on his language. A similarly positive resource, suitable both for parents who feel there is a problem and those who want to take a slightly different tack, is "Teach me to Listen and Obey" - it's a dreadful title but I promise you it's good - it's one of the very few resources to focus on the understanding of language - shocking but true. You can get it from the speech therapist Laura Mize at www.teachmetotalk.com.

Hi again, sorry for all the typos and short explaination - I'm at work and had to dash off!

I mentioned about telling him what every object is every time you give it to him...

Although I'm sure this isn't the most profound advice you'll ever get I found it really helped. It's important to acknowledge that ability to declare objects is a very different skill from communicating your wants and needs but it's a good place to start.

We found that my DS had an explosion of speech soon after we started this technique. Could have just been coincidence but it really helped to feel that I was instrumental and not just a helpless bystander (as I had felt up until that point).

The other big turning point for my DS was wearing Piedro's for his instability. He's been a much happier child ever since and I put this down to the fact that he feels more able and less frustrated.

To understand the signs of autism better look at the MCHAT and instructions

Bear in mind it is just a screening tool. GDD and other conditions can mimic autism and autism can also occur alongside other conditions eg cerebral palsy / GDD.

My DS regressed and was diagnosed with ASD at 2. Getting help early is key.

If you feel the help is haphazard you could apply for a Statement of Special Educational Needs - places at a special school nursery are often available from age 2 and they sometimes have SALT / physio / hydrotherapy on site - a statutory assessment requires the local authority to get reports from lots of different professionals so it can be a way of getting medical assessments to happen quicker because there is a set time frame for a statutory assessment (6 months) so even if you don't want to put him in nursery you can say you might want to just to get the assessments. See IPSEA for info on statements. It can be a back door way of getting things to move faster. You just write to the local authority yourself asking for a statutory assessment - theres an example letter on the IPSEA website. They might try and fob you off saying he's too young - just ignore this - look at the SEN Code of Practice which says can assess at 2 (or younger) and it can take months to get provision sorted out so its never too early to start.

It is worth going to look at special school nurseries as staff can be very experienced and may be able to suggest options locally. If you have one with daily physio / SALT etc I would give that serious thought even just for a year or two - can also take the pressure off you / your wife.

Are you getting benefits eg DLA, carers allowance, disability element tax credits etc?

Do you mind me asking if everything was ok at birth? No chance of oxygen deprivation or anything?? Any concerns in this area you should be pushing for a referral to a paediatric neurologist for a MRI scan.

He has had an MRI which shows some articles however he would not keep still so not really concerned by that and think it was the movement.

Logan was born as an emergency c section so I don't know whether this is an issue. Thats tricky to try and get an answer on I suppose.

My half sister child has glue ear and does not talk at all and is nearly 3 now. They say they might be able to do something about it. Logan does not really acknowledge us all the time and although he can hear it might be certain tones that he cannot hear. Its certainly something that needs looking into if only to rule it out.

He gets middle rate DLA does this effect tax credits would we be entitled to more working tax credits my wife works 26hrs a week and I am full time. Her mum looks after logan on mon, wed and fri.

Grandparents where would we be without them and a mother in law I actually get on really well with strange that.

You get a disability element added to tax credits for each child on DLA and a severe disability element as well if you get high rate DLA.

From the needs you describe I would think you might be eligible for high rate DLA if have to provide care at night - look at cerebra guide here The rules for middle and high are the same except care is also needed at night - cerebra explain how much time this means and what they mean by 'night'.

I would definitely kick off the statementing process as a way of getting some proper reports setting out need and provision.

malfranco I think you've had some very good advice already. But Portage have been the best service IME - and they were the quickest to see us too. I self-referred - just phoned them up and explained DS1's problems. They are also very good at explaining where all the services fit together and about the process for applying for a statement of special educational needs. You definitely need to see a community paediatrician who would be the most experienced in diagnosing developmental disorders such as developmental delay or autism or something else. They can also do blood tests/genetic testing if they feel that is an issue.

My son has been diagnosed with ASD and a lot of his communication problems became apparent at around Logan's age. He had no words, didn't point, and didn't even wave at that point. He also had glue ear which was not diagnosed for a while and although it has cleared up, we suspect that his hearing was affected for quite a while. At the age of 2 he didn't appear to understand anything at all. Now however, he understands virtually everything you say (he's 3.4) so he has caught up a lot since his hearing has improved.

I'm sure you've been told this, but because he's had a delay in starting solid food, he will be later to talk simply because his muscles haven't had the practice they need to form words.

We were also told to give DS1 choices - ie do you want a banana or an orange (and show him both). It is a way of naming objects for him but also to try and get him to choose what he would prefer. Try and include one thing that you know he is not so keen on to motivate him to choose ie offer him a piece of cucumber or a biscuit. If he doesn't make a choice either by saying/looking/gesturing, then you give him the item that you think he doesn't want.

There are lots of people on the SN board who have helpful advice, so keep posting.

Hi Malfranco
Have a look on the childbrain site they have an excellent online form for testing for ASD. I did it with my little boy and it was spot on!