Mum of a tiny little baby with developmental delay

Lynnn

Hi, my name is Lynn, I am a mum of a tiny little baby with developmental delay. Just looking for some other people in similar situation to discuss things and share experiences. 

Lynnn

Is anyone else here with an undiagnosed child or anyone could tell when they first had their diagnosis? 

Geoark

Hello @Lynnn and welcome to the community.

My daughter was finally diagnosed with aspergers when she was 12, it was only started to  be taken seriously when she was 10, having been told by 'specialists' on several occasions that she was shy or it was normal for an only child and she would 'grow out of it'.

Unfortunately it can take time to diagnose what is wrong, or worse still to be given the wrong diagnosis.

As this is a tiny baby is this mainly a physical development? Have the doctor/hospital said anything to you yet about potential cause?

Lynnn

Hi Geoark, thanks for your reply. 
 My little boy is 16 months old, but in his development he's on a level of a 6months old baby. Not just physically, in every area he's a little behind. He had several tests for finding the cause, none of them gave positive results. I was told that it's very likely to be a genetic disorder but even genetic testings couldn't find the cause. 
I just find it difficult  that I don't know what to expect. Not sure if a diagnosis would help on it though... 
May I ask when did you first noticed that something is not quite right? How did you managed that time while you've been waiting for the diagnosis? Though in your case that was probably even more difficult as professionals didn't take you seriously for a while. I also went through that, kept telling midwifes, GPs, health visitors that little boy is not aware of his surroundings but nobody seemed to believe me in the first 3 months.

Geoark

Hi Lynn,

The first, in your face, indication we had was when she was three. She had a meltdown over something silly and nothing we could do about. I ended up with a bloodied face and a massive bruise around my hip after carrying her home. Once the blood was cleaned off my face was full of scratches. When she finally came down from her room she was shocked to see me and could not accept that she had done it. Fortunately it was the first and last time her melt downs resulted in violence.

We did get a laugh from her nursery. For some reason she was 15 before she called me dad, and had always used my first name. When I picked her up from nursery one day the teacher started laughing and asked if she could have a quiet word. Because she always used my name they thought my wife was having an affair with someone! 

But the older she got the worse it got. Academically she performed above her peers, however in terms of maturity she was well behind. To give an example of how this affected her, she was in a class a year ahead of her as her teacher was off. The class teacher decided to do a sudden quiz, my daughter got all but one question right. One of the boys could not accept he beat her, and after class she was pushed down some stairs by the same boy. Of course as she got older she began to understand more that she was different but didn't know why.

One of the things which used to wind me up was we could have a really good day and she would suddenly announce I scaring her, but her body language was over the top as if she was taking the mickey. It was not until after we were told that she had Aspergers that it dawned on me she was learning her body language from cartoons.

The biggest change when we accepted she did have aspergers, before the diagnosis itself, was not in her but me. Having some understanding of what was going on meant I had to do things differently, and soon learned to appreciate her 'quirks'. She could never understand why I would punish her by sending her to her bedroom, the one place she was happy to be and had all the things that were important to her. Until last year when I explained that she was never sent to her room as a punishment, but to give her time to regain her composure.

A lot of this is sugar coated, and things did get very dark between us before it was mentioned and one thing I was concerned about was if I would ever recover my relationship with her. She still remembers those times, but we have a fantastic relationship now.

Lynnn

Oh, that means you've had like 7years while you've tried to convince professionals and tried to find out what was happening to her. Must have been very hard. We only had 3 months like that and I remember how I questioned everything, even my own common sense and some day I thought 'he's absolute fine, why I always worry' and then the next day I was sure he had some severe medical problems but every time when I mentioned it to someone I was told that I worry too much and he was going to be fine of course... 

Pippa_Alumni

Hi @Lynnn, welcome to the community!

I hope you find comfort and support in talking to others in similar situations, and do let us know if we can help you out with any specific queries. Hope today is kind to you!

Geoark

@Lynnn the feeling that we could be wrong, and she had 'outgrown' her autism is one I know well emotionally, though intellectually I know this is not possible. Sure enough something comes along to slap me in the face like a wet fish to remind me of this.

The thing is with genetic testing is that there are so many, and some are very rare it can take years to pin down the exact cause.

Over those seven years I built up a lot of regrets and guilt, it was a community much like this one with parents who had been through similar experiences who helped to get past these and become the father my  daughter needed.