Hello

[harrysmummy]

I have a 18 month old son named Harry as you can tell from my name lol!!! I have two older children too aged 6 and 4 from about 5 months old I noticed something was different with Harry, he was rolling over or making any attempt to roll over and subsequently didn't meet any milestones at certain ages, I took him to our gp who agreed he needed assessing developmentally. When he was 15 months we went to our local hospital and a lovely paediactric doctor did his development check and indeed he was around 8 months old she wanted to refer him for hearing tests and genetics testing. Also referring him to the child development tea for physio, OT and SALT. He's had his hearing test and that was fine, we are due a home visit on the 1st November from the paed on te CDT who specialises in children with sensory issues and things like autism and PDD. If you don't mind I would like to list some of the things my Harry does an doesn't do and tell me what u think the plan of action will be?

 

Doesn't self feed, won't hold or touch food

Isn't walking yet

Doesn't like cuddles, never has really

Doesn't point to an object he wants

Only babbles repeated sounds

Doesn't maintain very good eye contact, he will do but only for a couple of seconds

Seems to have a meltdown if a loud noise occurs when he's not expecting it, ie: I took him a few times to my older children's school assembly and when everyone clapped he literally screamed and panicked and had to gasp for breath!

Spins or rolls toys

Opens and closes cupboard doors

Bangs his head

Hits his ears

Does a funny tensing thing with arms, legs and face

Waves 4 fingers in front of his eyes

And te last few days has done this kind of sideways, upwards glance with his eyes

Seems quite happy in his own world playing with toys, well rolling them lol!!

I'm so sorry I have gone on and on but I really don't have anyone I can talk to about these things, my other halves family just say oh he's fine etc they won't listen to me :-(

Thanks for reading

 

 

Kelly, mummy to Harry,

Born with TOF/OA, one kidney, right sided hemihypertrophy, low muscle tone and developmental delay, my perfect baby boy :-) xxxxxx

[Suze]

Welcome <'> ...you have,nt gone on and on lol....

.............Harry is still relatively young ..so its excellent to be getting this input and these people on board.He does appear to have several sensory issues mentioned in your list.How is he with food and lumpy foods etc?............does he like to be held and cuddled?

 

.........I would imagine the home visit will be a chat with you and an observation of Harry.Having the OT on board will be beneficial as they can assist with sensory stuff.I would think its too soon to give any firm DX just yet and that they will keep a close eye on him up to entry to nursery at 3 yrs.Best wishes suzex

[harrysmummy]

Thanks for the reply :-) he doesn't like to be cuddled he kind of pushes away or tenses up, with his condition TOF/OA he can have trouble swallowing but we have had this checked and there isn't a reason as to why he gags on lumps etc x

[harrysmummy]

He doesn't talk either it's just a repetitive babble and a new sound can stick for a day or so if u no what I mean x

[smiley1590]

the earlier the support/invention and network of services e.g O.T are in place the more improved opportunities and 'advantages' harry will have to have happy,healthy , successful future i think good idea!

 

XKLX

 

*keep us updated on harry's progress!!! good luck X

[harrysmummy]

Thankyou :-) yea he was due to be having all this anyway but after a call with his doctor today I have found out that the doctor who's doing a home visit on the 1st to assess him is a specialist in toddlers who display sensory issues so at least I know that's what they feel he has and it's all moving in the right direction :-) I will definitely keep u updated thankyou so much for replying :-) x

[Sally44]

It is good that professionals are involved.

I think that as he is 15 months old, not walking, not talking, showing sensory issues, that you are probably heading towards a diagnosis of an autistic spectrum disorder.

Family are probably trying to be supportive in the only way they know how. But I know it doesn't help because you have other kids and you know he is different.

The repeating of noises is probably echolalia. It may well develop into repeating actual words or phrases.

The sensory issues will mean he will need a low arousal environment for nursery and school.

He is going to need regular input from a speech therapist and an OT.

He may need to go to a special nursery.

The eating problem maybe due to taste/texture of food. Again a sensory thing. And the OT is the person to be working with you on this - especially if the Speech Therapist has already seen him and said he has no reason why he struggles with lumpy food.

The spinning is also a sensory thing. You really need a sensory diet, and also a sensory integration programme - but NHS OT's don't usually do this because the NHS does not pay for this kind of therapy, as it is expensive. BUT there are schools that have OT on site that do do this type of integration programme, and it maybe that you have to work on getting him into that type of school. But that is looking some years into the future.

If he is not talking, and is showing significant communication difficulties by age 3+, then he will not manage mainstream because he won't be able to understand or communicate, and if the difficulty remains this severe it is obviously going to affect his learning because if he does not have a good grasp of his mother tongue he will struggle to learn to read/write. Again time will tell, but realistically you need to be thinking about an ASD special school or unit if this degree of difficulty continues. And even if he improves significantly, it still has the potential to have a severe impact on his ability to learn to read/write.

 

The fact that he is not walking also suggests sensory issues, and maybe low muscle tone/poor core stability, which maybe due to hypotonia, and/or dyspraxia.

 

I would advise you to get in touch with your LA parent partnership or National Autistic Society group and find out about local parent/todder groups for children on the autistic spectrum. It would help you enormously to meet with other mums and children who are having similar issues.

 

I think that any professional reading the list of issues you have noted is definately going to be thinking of an ASD. Maybe next time you meet a professional you could ask them the question. They will want to observe him for some time before they make any final conclusions.

Edited October 19, 2011 by Sally44

[harrysmummy]

Wow thanks for the reply sally :-) it helps so much to be able to hear peoples experiences and views, the last two nights it's been more or less impossible to settle Harry to sleep! Up until 2 nights ago he would have his bottle of milk and fall asleep at 7pm but it's like he can't switch off?!? He just screamed and screamed and screamed, he don't want me cuddling him or comforting him he just say and screamed? What would be the reason for it? X

[Sally44]

It is so hard to guess what might have kept him awake and upset him so much.

My son used to take himself to bed regular as clock work. Then he got to that age when they get afraid of the dark, and from then on it became impossible.

We had years of him having to sleep with his dad or me because he was so afraid or could not switch off. He used to repeat TV dialogue to himself for hours.

 

I would say try to get into a bedtime routine so that he isn't watching TV etc for around an hour before he is supposed to settle down. If he finds having a bath soothing then do that. If he has sensory issues around bathing and washing, then avoid it as a daily nighttime activity because it will just wind him up.

 

Him getting upset could be related to anything. My son would get upset for hours at an end at that age and I would have no idea why. Looking back it could have been problems with transitions. Having to turn off the TV. Having to put away toys or having to dismantle toys to put them away. Putting things away in a different place. Giving him a different cup or plate to eat from.

 

There are sensory type things that sometimes help children to calm down and get to sleep, but really an OT should visit you and advise on those types of things. It might be night lights, a weighted blanket, bedtime massage etc.

 

The fact that he cannot communicate must be frustrating. When you see the Speech Therapist ask her about PECS to see if that is something she would be willing to try. Then at least he can learn how to communicate his needs to you.

[harrysmummy]

What PECS? He had a better night last night but he was just exhausted from the previous nights! He seems very whiny and unsettled I think you're right that the lack of speech is frustrating him, I sit there for hours saying things for him to repeat but he won't it's just something like dududududududu or bababababababbababa, he also won't drink juice or water he never has purely just milk. Roll on the 1st when hopefully I may get some answers! I'd rather no what is potentially happening than wonder fr the next few years if that makes sense x

[Sally44]

This a link to the Wikipedia description of PECS http://en.wikipedia.org/wiki/Picture_exchange_communication_system

 

18 months is young, BUT it is worth talking to professionals about the options available to aid communication. There are ways a child can be taught either PECS or signing so that they can communicate their basic needs. And that communication can be built on. A friend of mine with a Downs Syndrome child who also had hearing problems, used both signing and pictures to communicate with him which she began using from age 2 onwards and still uses now he is in school.

 

The Speech Therapist is probably the best person to talk to about this. You can use both systems at the same time eg. visual picture of a drink, whilst signing "drink".