Feeling sad, scared and quite alone... need advice

[rachelmummy]

Took DS to the doctors this morning and he's been referred to a paediatrician about his speech / behaviour.

I knew he would be. His is over 2 now, but doesn't speak and, most of the time, won't ackowledge someone speaking to him. He certainly won't respond verbally. There are other things too which I know, from my own research is stimming. And there are other things too, walking on his tiptoes etc.

Normal things freak him out. Getting his hair and nails cut is a massive problem. He recently went to a children's party and, while all the other kids happily played and got their faces painted, mine just tried to find ways to escape from the place and I cannot imagine the scene if anyone had gone near his face.

With me, he's a very happy, loving little boy and he can be affectionate to others and he does have friends. He has a twin sister, who he adores (and who adores him). She is talking like a book now and, when they go to activities together, I can see that he gets distressed if she is not close to him. It's like she is his link to the outside world. I hope that doesn't sound too dramatic. He gets incredibly upset if she goes anywhere without him or he has to go without her. His dad is only around at weekend, and he doesn't really miss him at all.

I know he understands what I say, but he simply doesn't communicate verbally with me at all. He is improving with time and there has been no regression at all.

FWIW, potty training with both of them is going well. My son can communicate with me, just not verbally.

Can someone please tell me what to expect or give me a slap if I'm getting far too worked up over this. Have been in tears most of the morning.

Oh lovey, I have no experience at all but and I hope someone more useful comes along soon x

I don't have any advice either. But a couple of scenarios:

My friend has a son who is a little different to his sister and other children around. His mum always worried, his dad just said 'he's himself'. He's a lovely boy who is doing well at school. He is different to the other children, but he's forging his own path.

There's a girl in my son's class who didn't speak till she was 3. She went to a speech therapist and her mum was told she might be Asperger's. She is now 7, is the most expressive reader in the year, has started weekend drama lessons because she was so fabulous in the school play - she's thriving. She is a bit different in some ways - she takes everything literally, so she'll need to development strategies as she gets older to deal with that, but her mum is so proud and is no longer worrying.

Lastly, I heard an interview with a man on the radio about a year ago. He's living a very 'normal' life, and was on the radio to talk about his work. But it came up that he didn't speak till he was 12, and then one day just decided he did want to speak after all. He didn't have much of an explanation, just said he hadn't wanted to speak till then!

Everybody is different, and with such a loving mum your boy will be fine. Remember he's still very young. My children have had some big anxieties and I would get pressure to keep putting them in situations that made them anxious, to desensitize them. I resisted that as I felt they'd improve with age and would only be made worse by this. Growing up and maturing works its own wonders.

It's good you've got the Paed. appointment to go to - prepare all your questions beforehand and write them down. I always find that my memory gets left behind when I enter a doctor's surgery!

Wishing you all the best.

Thankyou. I am just so worried about him. He is such a happy, loving, caring, little boy. He always shares and protects his sister.

It's not causing a problem yet, but I hate to think of him going to school and not being able to speak to other kids. I know HE would be a perfect solution for him, but it would not be for his sister and yet splitting them up and giving them such different experiences doesn't feel right either.

I wish I felt less alone.

I don't know about twins, but I have a 5 year old and a 3.5 - my youngest has a speech delay and said his first word at about 2.5. He is slowly improving with lots of help from speech therapy and a very good nursery school, but I have to admit that he speaks lots more when his big brother is not around. I wouldn't say that you should 'seperate' the twins as they are so close, but it might help if you do an activity with one and your partner with the other? Even for only a few hours a week?

One of the first things to do is get a hearing test to make sure he is OK with that. The pead should do a series of tests, which will cover all dev milestones.

DS also has some irrational fears, he hates hates hand dryers/hair dryers. Any loud noise such as building work he will screem louder than the noise. He hates crowded places and doesn't like shut doors. He refuses to be in a small room with the door shut.

In terms of language, I'm sure you will find out loads in the coming months but what is good to do with your child is a few simple things to encourage him to make noises. For example, blow bubbles and try to get him to say pop or make a popping noise when he pops the bubbles. Make lots of train/car/airplane noises. Clap, encourage him to play drums with pots and pans, etc. sing nursery rhymes and skip a word to see if he will try to fill it in (ie Twinkle Twinkle little ...... skip star and give him time to try and say somehting.

My DS is now 3.5 and still doesn't always respond to his name. I was told last week by his speech therapist (she is school based and visits him at his nursery) that DS was concentrating on a game, she called his name 5 times from his right side, and 5 times from his left, and he responded only on the 10th time his name was said. She asked him if he heard his name once or lots and lots of times, he said once.

Only recently has he started to look at people in the eyes.

He has been tested left right centre and has no other behavioral issies.

Anyway, what I'm saying is that language delay in itself is very worrying indeed, and might need lots of work on your part. A very good book to read is 'it takes two to talk'.

We are also concerned about school, that hee will lose his confidence bacause of other kids. But he is making so much progress now we think he will be catching up by September.

Let me know if you have any other questions, I'll do my best to help. Are you based in the UK?

there are a lot of us here who have been through what you are going through

Thankyou.

Blueberry - I do all of those things with him, but doing things without his sister is difficult because his father isn't around and I have no childcare arrangements yet.

I will check out the SN boards but (please don't judge or flame me) I'm having trouble coming to terms that DS probably does have SN.

It's important for you to make a list of things that worry you, and make sure that you discuss them with pedeatrician. It's easy to forget stuff when you are in a doctor's office.

Also, two years old is still very young and doctors tend to try and not diagnose too early as many mistakes have been made in the past. Unless the development is very very severely delayed, chances are they will keep note of everything and monitor him over the coming months/years.

In terms of language development, I spoke to DS all the time, made lots of noices, enouraged him to make sounds in a very positive way, just like most parents do but but he still had a two-year delay in his language development. It is hard work, they don't do it overnight and some kids really genuinely develop slower than others without there being anything medically wrong with them. I just think that two years old is very young to assume that he might have 'special needs.'

rachel We're not scary. I promise. Nearly everyone's first post is 'I'm an imposter, there is nothing really wrong with my ds, but can I just ask you........'

Some turn out to be right, but others are given the information they need ensure that their children, with their difficulties, do very well indeed through early intervention and support.

Blueberry - thankyou for your help. I will make a list of all the things that worry me and bring it with me. That is a good idea, as I think I will cry if I try to talk about it. It's just ridiculous. I get so emotional about it all. He's such a happy little thing, so gentle, and it doesn't help that he is physically so mature (he looks around 6months + older than his twin sister)

It doesn't help that, at the moment, my daughter is adding 2-5 words to her vocabulary every week, while my son seems stuck pointing, shouting, screaming or manically laughing. Maybe it's more frustrating for me than it is for him.

Stark - thanks for your message. I know that all I can do is wait and see, but I will check out your forums.

Hi I'm lingle I used to be on the SN board for two years non-stop as my DS2 had severe language delay and the other problems you describe to boot. I don't usually respond to these posts any more but I'm responding to yours because of what you said about his relationship with his sister. I want to say please cherish the fact that his relationship with his twin sister is so great. My DS2's relationship with DS1 meant that he still got to experience the fun of being a child. The love and trust they have in each other will be the foundation of all his relationships I think. Now he is in reception and I can see him transferring those skills he used to have exclusively with DS1 to his group of select but very real and age-appropriate friends.

I also want you to buy "It Takes Two to Talk" (published by Hanen, available from Winslow). The book is a training manual for parents. It will show you how to ditch intuitive but perhaps not very good techniques (like asking too many questions)and how to use the best techniques you can to help with your son's langauge. It is the best place to start because:

• it does not mention any scary SN words

• it does not have anything negative in it
• it will not make you cry
• it is probably the best-written and best edited book I've ever read.
• you can show it to your ex and it won't cause any "what do you mean he has special needs?" arguments
• if you apply yourself seriously to it then you may not have taught your lad to talk but your technique will already be much much better.

good luck, have fun getting busy!

My DD2 sounds a lot like your son in lack of speech and behaviour.
I am so worried. She has been referred to speech therapy but needed a hearing test to rule out a problem in that area.
DD2 (aged 27 months and 1 week) tantrumed and refused to co-operate at all.
They raised concerns at her lack of eye contact (she was tired and is naturally shy) and that she doesn't do role play with her older sister who is almost 4.
She needs another hearing test. If she refuses to comply with that then they will have to do another with her under sedation.
They also noted a few issues with her behaviour that they think warrants a referral to a paedatrition.
Am terrified she has autism. She doesn't speak really but talks to her toys by name.
I am so bloody scared for her, for us.
No help really OP but let's hope out little ones are just late developers.

Two is the right age to start helping little ones with language problems and 2.0 is better than 2.4 and 2.4 is better than 2.8 (when I got serious though in our case that was by no means too late), etc, etc.

Of course it is right about the hearing tests, but NHS processes can take a long time.

it takes a while to get the level of expertise you need as a parent to take charge of the situation, and you also have to keep at bay the things that can slow you down and distract you: fear/depression/differences between you and partner about the right approach/weird statements from professionals that make you feel your child's strengths aren't really strengths, etc, etc. That's where the mumsnet special needs board and organisations like Hanen (www.hanen.org) come in.

Nearly every two year old child with good eyesight, be it fast developer, slow developer or slow developer with autism (even some kinds of severe autism if I recall rightly the experience of my old friends on the SN board), will benefit from (to give one example) his/her parent taking photographs of the main people and places in his/her life and sticking them all up near the door, then pointing to them and telling the child they are going to see Bobby/go to Tescos (using the right techniques - because parent has read Hanen books so isn't overloading child) before setting off on that trip.

So my advice is don't wait: get busy. Believe it or not, it can be fun.

I've left SN board now because my child has overcome his problems to the extent that I am no longer empathetic enough - it's no longer my world so I'm less sensitive than I used to be to the nuances of people's posts. But there is another generation there and I would urge anyone with a two year old who isn't talking to visit that forum.

Oh, that is a good idea, about the photos. I might try that with my son. He loves looking at pictures of people, and knows all his family members.

lucilastic - Actually, it is nice to know that I'm not the only one out there. I know there is nothing wrong with my son's hearing. There is nothing wrong whatsoever with him hearing, understanding and acting upon that.

rachaelmummy, I know there's nothing wrong with DD2's hearing either. I guess the professionals need to rule any problems in this area out first though. I hate the thought of her possibly having to be sedated.
Does your son babble? DD2 often sounds like she's talking a foreign language.
She would also seemingly die of thirst rather than say "juice, drink or even yes" when I ask her.
I am not the most patient person and on top of the worry I am stressing myself to death.
She has a speech therapy referral on 22 Nov but until then I am trying really hard to get her involved in role play.
Does your son socialise? DD2 is quite indifferent to other children, even her elder sister.
Could things stil turn out ok?

My aunt only started speaking when she was three years old, and went straight to speaking in complex sentences. She is a member of Mensa. Turns out that she was maybe just a bit too lazy (or perfectionist) to talk (also, she did not really want to walk before the same age).

This just to show that there could be several explanations to what's happening with your DS (not all negative!).

Lucilistic - yes, my son is constantly chatting away and actually has lots of 'words' that he uses consistently (they are just not words you would find in a UK dictionary ) and he is very sociable with his sister (twin) and other children that he sees.

He shares nicely and plays lots of imaginative games

You have had a lot of much more experienced advice here, but entirely from some observations at twins groups, it really seems that twins tend to speak later. Do you go to twin groups? The one I go to has children up to 3 years and there is hardly any talking going on - when I hang out with my friends with (singleton) 2/3 year olds they never seem to shut up! In a another entirely unscientific observation, girls tend to speak earlier.

Not that there can be any harm in starting investigations, but 2 seems quite early to start being very worried. Well I would say that - I have 18 month old boys whose only "word" is a strange shriek that means cat.

Sneak on over to the SN boards...a wealth of advice, comfort and just plain understanding awaits:) Some posters stay a while, some forever..and it's friendly and many will understand your fears..:)

As someone with a son with autism and learning difficulties I would say your post does raise red flags and I think you are sensible in getting referrals.. because early help really does mean best outcomes if your son does have language delay or autism or whatever:)

The likely path is he will see a Paediatrician who will then refer to speech (SALT) services to assess, possibly others (autism ..only mentioning hat as you mention stimming and sensitivity) if it is felt appropriate, and take it from there.

My son had NO language til he was 4, but was very (over) friendly and different.. we started getting help when he was 2 and he never shuts up now He has autism but is gentle, loving, content, everyone adores him and his life is GREAT he is just a tad different to the herd...he has unique talents and interests that stem from his 'disability' and I can't imagine him any other way :)

Your son sounds lovely..:)