Developmental delay for Toddler

[thupre]

Hi mums,

I'm new to this group and I have lot of concenrs about my daughter's development. She was born very small for her age, dring birht doctor didn't show any concerns about her health. During her 1st year, she was not gaining enough weight so she was referred to pediatrician.
From there everything started ,Dr said she has Microcephaly which means she will have some dvelopmental issues. That time I wasn't really concenred because I had no idea what it is.

She started showing delays to reach her milestones. She rolled over around 7th month, was sitting unaided at 8 months, started crawlling at 11 months then Independent walking at 18 months.
She is not too much delayed , but now my biggest concern is talking , she is not 2 years and 5 months old and dosn't say single meaning ful word. Just babbles!

I feel she has cognitive dealys, she doesn't know any shapes, colors and numbers, But tires to repeat what we say or do. But she has very good eye contact and likes to be surrounded by people which is good thing ( because earlier i was thinking of Autsim, but now i feel feel so).
MRI, EGG, blood work for genetics everything came back normal, one thing is Region of homozygosity (6.1 MB in size )but genetics Dr said it is mostly benign!.

I'm writing this to hear kids having similar situation or to know how they are progressing and to know how mothers are dealing with and how should I proceed with this? I'm totally blank and not getting what to do!! seeking for advise!!

This is the toughest time I'm going through.

Thanks,

I wouldn't worry too much about shapes/colors and numbers, some will know them all by 2 years old while others wont. She is speech delayed as you mentioned, about a year behind (eight words expected at 18M), but speech delays are very common at this age and tend to clear by 3 years. As she is non verbal how does she communicate her needs and share experiences with you? for example to reach things which are out of reach, or to share experiences like for example a police car with the lights on, or a plane flying in the sky (toddlers love to share these type of things with their parents/carers).

Just to debunk some myths, children with autism can and many have excellent eye contact, are very affectionate and very socially motivated - eye contact is not about the amount of time a baby looks at you or if he is staring at you but about communicative intent (some people refer to it as a baby talking to you through his eyes). Not saying that this is the case here, just making the point as many people only here about the worst stereotype behaviors linked to autism.

Kinda similar here. My daughter is 3 now (4 in july). She was late meeting her physical milestones. She was late sitting, rolling etc, crawled at 11 months but didn’t walk until 21-24 months 😱 but we have been told she has hypermobility and low muscle tone.

She is also speech delayed. At your daughters age she didn’t say anything but has made some progress (still delayed) but progress is good even if she isn’t where her peers are. She also makes good eye contact and very sociable. We have been told her speech delay and unclear speech could be related to her low muscle tone.

She has been seen by Paediatrician’s, speech therapists and educational psychologists etc and they do not believe she has autism.

I actually have an elder child with autism. He is 8 soon and is high functioning but had a lot of signs at a young age. No eye contact, lack of sense of danger (still the same now), major fixations and obsessions, a very very limited diet, really violent meltdowns when things didn’t go his way, no interest in other people (apart from family), never reacted to smells but would react terribly to noise, he was a handful to take anywhere. He was non verbal until 4-4.5 but is not very sociable. He’s always been a happy go lucky child though. Constantly smiling and laughing which I believe is because he doesn’t take the world seriously whereas my daughter gets in grumpy moods which I guess is normal.

I’m not much help but I just wanted to say that my daughter wasn’t talking at her age and is making progress. My son didn’t speak until 4 and doesn’t stop now.

Good luck!

My daughter is 1-2 years behind with speech. Although she is saying more and more it’s also because her speech isn’t very clear.

Hi mums,

Thank you for sharing your experiences. @AladdinMum, for your question "how she communicates with us"? Is like for things which she needs, she points n some times points n babbles. Other things like plane in the sky n light car those things i don't think she has an interest in it!!. So far she never showed anything outside which she has interest in it. Not only her speech is delayed, i feel her overall behavior is like 1 n half year old baby!! Her head circumference at this age is 43cm which is less than 1 % percentile.

I live in Sydney Australia, her appointments are way far each visits. I have waited minimum 3 to 4 months for each appointments like EGG, MRI, hearing test, speech pathology (it is on may 1st). Still her developmental assessment is not done. I have heard early interventions makes wondres n kids see lot of improvements from it. I'm hoping to see some good things for my daughter from early interventions.

@thupre that sounds great, it is great that she is using gestures to communicate, speech delayed toddlers tend to compensate by an increase their use of gestures (vs. non speech delayed children). In your next appointment it would be worth mentioning the fact that she is not sharing experiences with you, toddlers tend to point and show the most insignificant things (which obviously are important to them, like a tiny piece of paper on the floor, a rock, a leaf, a plane in sky, a balloon, a dog, etc). - they love to share these types of experiences with their carers and it's an important milestone.

If you are worried about autism or related conditions, it would be worth just doing the MCHAT questionnaire (find it on Google, it only take 10 minutes to do, and it's considered the gold standard in early autism screening in 18-24M toddlers).

just join in, echo her sound back to her. She is starting to talk by making sounds.

If your daughter is looking at a book and says mmmmm, baba, yaya,, ohh or whatever. Then point to something and say sheep. Keep it simple.

I'd write a list of things to ask and concerns when you see your specialist. I always forget when the appointment comes.

Tricky, so my DS didn't point to show something he was interested in until about 2 years 5 months, he didn't have single words until just before 3. Now he is 3.5 is is making great progress on speech but is delayed socially and emotionally.

The website teachmetotalk has a check list of pre-verbal skills a toddler needs before words will come, understanding of words is significant.

Autism isn't the only reason a toddler will be late to talk, a general speech and language delay or disorder and learning difficulties (for whatever reason) are from what i can tell the main reasons.

*@AladdinMum

" speech delays are very common at this age and tend to clear by 3 years. "* is this clear with speech therapy or just carrying on as normal ? I'm just interested as my DC is nearly 3 and has a delay. I'd estimate him as 12 months behind compared to his peers we see. And whilst his speech is slowly improving I'd be amazed if he caught up in the next 3 months. He is not having therapy and won't be assessed until post 3 years if I am still worried they say.

@mytreeisgrowing it depends on the child, if he is already three years old and not caught up then some speech therapy would help. At this age speech therapy is play based and would be offered free through chatterbox session in your local playgroup - always worth giving it a try, they are really fun and all play is based around encouraging them to talking.

@Mummy0ftwo12 "Autism isn't the only reason a toddler will be late to talk" - totally agree, lack of speech (or number of words) is not in any of the criteria for autism screening or diagnosis. Autism is a social communication disorder, not a language disorder.

@ AladdinMum,

Last week, we had developmental assessment for my daughter, the Dr said she had a learning disability .

I don't know what to do and how to take this forward. I knew that she has delay with cognitive skills but last week officially said she has learning disability.

In the group on other message threads I have read that you work with special kids, what should I expect for my daughter in her future? what actually is learning disability? will it effect her academically or for her normal day to day life as well? How can I help her to progress.

Thanks.

@thupre - when you say she had a development assessment was this a formal assessment involving development pediatricians and other clinicians? did this assessment have a name? was she officially diagnosed with anything? was the Microcephaly confirmed? (normally x-rays of measurements of the head are taken to work out the ratio between brain mass and head size).

I'm sure your will get a report letter from the consultant in the next couple of weeks. This usually has a bit more info about what you discussed. If you don't receive anything give them a call.

Then I'd speak to your HV and see what support is available. Or make a list of questions and call back the consultant that gave the diagnosis once you have their report.

You should also look into any support via benefits you may be entitled to now or in the future.

I think the best thing to remember this is still your little girl. You just want her to achieve her best potential. Knowing she has a disability will just you might have to take things slower or change things slightly so they suit her better.

Best of luck

Has she been referred to a speech therapist? If not you can ask your HV to do this or in some areas you can self refer.

In some areas there are specialist nurseries who can support children with developmental delay, again your HV should be able to advise you on this.

It was formal assessment, but was only with one development pediatrician. They did not check her head by any other way other than head circumference measurement by tape. Her head is always off the chart since birth, it is on 0.4 percentile, but her whole body is small where height is in 15% percentile and Weight is 3- 5 % percentile. (I feel her head is proportionate to her body).

Dr here always say "small head means small brain". I never head of something what you are saying " (normally x-rays of measurements of the head are taken to work out the ratio between brain mass and head size)." is this something which they have to do to declare any diagnosis officially (especially for Microcephaly)?

Based on her medical records and about delays and also observing her activities for 40 to 50 minutes they declared , she has learning disability.

I agree she was not doing what she is suppose to do for her age, but at home she does more than what she demonstrated in front of the doctor. (Quite common some kids doesn't open up in front of strangers). I know she has delays but I was not satisfied by the way how doctor said disability with out any technical or logical screening.

Dr has asked me to come again to discuss on "Early intervention services" fingers crossed! don't know what is waiting for my daughter in the future!!

I agree with you, I too would not be very convinced with the assessment that you describe, it sounds very rushed. Normally to avoid issues of shyness there would be someone coming to your home to observe her in a normal environment. Total nonsense about small head/small brain, it makes me laugh, how can a professional clinician say that. Measuring head circumference (with a tape) alone to diagnose Microcephaly is a lazy way of doing it, there are many more accurate ways to confirm it or not. However, if Early intervention Services are being offered I would take them, no harm taking them regardless if there a diagnosis or not.

Yeah I feel the same, early interventions are always good, it will really help with her delay regardless of what her problem is.

Today I met with the doctor and she handed over the document of last week's test to me. In that she has mentioned test type as Griffiths Scales test.

Regarding early interventions, how actually it works? is it all about about repetition of the same things (like daily routines or activities say put the socks on, pant on, drink eat etc) until they get hang of it? that's what my Dr told me today. I have seen in other posts mums saying early interventions do wonders on their kids, I was really thinking that it does magic on kids but didn't know that its all about repetition and making kids familiar with the things.is it the same all across the world?

After a long wait, we got speech pathology appointment (I was happy that with speech therapy classes my daughter would start talking - dreaming about magic happens with therapy classes) and the therapist asked me to attend "it takes two to talk" session which will help my daughter with communication. But I don't think they are teaching any thing new in the sessions, it is all about how we create and provide more and more opportunity for our kids to initiate communication, which we most of them do when we notice delay with kids (like face to face, eye contact, playing with them, interpreting their babble, commenting on their babbling to engage them in conversation) - i'm not learning anything new there.

will the early intervention classes will also be like that? teaching repeated steps instead of teaching actual improvement in their learning?

I'm totally lost!! but will not neglect any single small opportunity which comes in for my daughter, some things though I'm feeling not helpful still i'm doing with patience. I'm full time working mother, juggling with work and her appointments follow up and therapies.

Any mums whose kids started early intervention, please share your thoughts what exactly happens in early intervention classes?

Thanks.

Yes, much of early intervention (those based on behavioral therapies) is a lot of repetition and patience. It is believed that at this age the brain can be 're-wired' to learn those skill that may not come naturally to the child. It is based on breaking big steps into small steps with the child copying and learning these small steps to make the big step (and being rewarded along the way - a reward can be food, a toy, clapping, a hug, a cheer, etc). If you search in YouTube for ABA therapy you will get an idea. Outcomes vary, with some children really thriving while others not learning much, it really depends. However, consensus seems to suggest that these interventions are usually positive for the child at this age.

Speech therapy is similar in the sense that instead of having physical steps you have words, and words mean rewards. It is all play based at this age, for example, you might put a car at the top of a slide and say "Ready, Steady, Go" before releasing it down the slide. If the child likes this, you would repeat it a few times and then you would do it again but this time just say "Ready, Steady" and stop while looking at the child. The child will get a sense (or the pressure) that he needs to say "Go" if he wants the car to roll down the slide. At first they might just grunt but that counts and you roll the car down. Eventually, if done enough times over a few days the child will start saying "Go". This can be replicated with balls, bubbles, etc while using other words. Another popular technique is using songs while you sing together and say something like "twinkle twinkle little" and then stop and look at the child, again the child will 'eventually' start saying "star" if he wants the song to continue. You need a lot of patience, as this can be slow, it really depends on the child, it can take months or years but it tends to be a positive experience and children learn from it.

Thanks AladdinMum, now I understand the concept of early intervention services and how it works.

We are doing a similar course with my DS if yours is a weekly session run by the council. Ours is for 10 weeks? I can't say it's helpful so far. It's really stating the obvious, but unfortunately some people still don't get it. The instructor doesn't seem to actually listen to what they are saying, she sticks to her script. I assume she doesn't really know anything about what she is doing. One week was about reducing background noise when talking / playing with your children. They asked for examples. One parent said she had turned her sons iPad down when he watches it, as he did have it on very loud. I was waiting for the instructor to correct but she just said great

So I think lecturing someone whilst their child is hanging off them is not useful. Especially as they seem to have this thing about not providing anything for the little ones to do. Apparently too many toys is overwhelming and this could be one of the reasons they don't talk I can only assume they are trying to incite a riot with 8 children fight over one thing.

But as you say you have to take all opportunities and try them, at least so you can move onto the next stage of help.