Developmental disorders/learning disabilities/genetic syndromes & more support group

Hi. I'm not totally sure if I belong here or not. My daughter is 23 months and recently been labelled as having mild general development delay. I have had concerns about her for the last year, and we have been seeing a paediatrician since she was a few weeks old due to feeding issues. As she still wasn't walking in Dec she was referred to the community paediatrician.

So we had a Ruth griffiths assessment a couple of weeks ago. On the day I was told my daughter was developmentally normal but just a late walker. So no further referrals or assessments, even though I was concerned about her understanding. But then I got the report in the post which painted a completely different picture. It put my daughter in the bottom 1%of children her age in all areas of development apart from one, where she was bottom 5%.

So worried call to the comm paed who said they hadn't realised how the scoring would come out and they want to see us in a couple of weeks. If my daughter still is 't walking there will be a physio at the appointment too.

I don't really agree with the results of the assessment. Not be because I think my daughter is on track, but because I think she is ok in some areas and she actually scored her best mark on language and hearing, which is an area I have concerns about!

I took it upon myself to print out the early years outcomes document from the department from education and did my own assessment. Generally speaking my daughter seemed to fit within the 'normal' range in the majority of areas. Her nursery have no concerns bout her development other than not walking. But I'm not sure if I am 100% convinced about their assessment either!

I'm not sure whether to just go with the comm paeds view and push for referrals for support in all areas. Everything I've read suggests the earlier the intervention the better. I've also downloaded some SALT toolkit stuff to start doing some work at home. I've also got massive guilt about working full time with all of this going on!

I really don't know whether I'm a fraud for posting here or whether I am just in denial! What would you push for in my situation? Like everyone here, I just want to help my daughter as much as possible and help to get her any support she might need. X

Thanks for reading that epic message!
 
If you are concerned there is no harm in pushing for early intervention. If she is indeed on track the therapists will be able to tell after working with her for a bit. Honestly it can only help and being a working mom, the extra help will be good for you both. I would try for whatever services she qualified for under the Ruth Griffin test. Even if it's wrong, that test will help get her more therapies and more people for you to speak with about her development. Good luck dear, and welcome :hugs:
 
No need too feel like a fraud :) everyone here has babies with varying degrees of delay. My little guy has shown signs of delay since he was extra tiny (and I fully admit I'm a nutty mama) I pushed for early intervention assessments when he was 9 months old. I fully believe that it's better to have the assessments and supports in place as early as possible, because if you have a concern, they are there to help you and your little one. My little guy has benefited from being seen very early, and is starting to progress and catch up. He'll be 2 in may :)
 
Hey Rebrrr, we're a mixed bunch in here - all are welcome :flower:

I would get as much support as possible - can't do any harm. To be honest it is the therapists who seem to have the best handle on assessing child development and where your child should be. One thing I've learned is that paed's know the medical stuff, but when it comes to the development stuff often get it wrong.

If your LO doesn't end up needing the additional support at least you can rule it out and probably learn some nifty exercises to do with LO at home to speed things along. :thumbup:

Good luck :hugs:
 
Thanks everyone. I have the next appointment with the community paed and physio in just under three weeks, so not too long to wait.

Have been trying some vocabulary exercises with my daughter and she is very good at attempting a lot of words. Only limited success with putting out two objects and getting her to identify one, or giving an instruction to select one thing and put it somewhere. But maybe I'm trying too much and should just stick with broadening the words she knows. Have been working on ball and brush as these were used in the assessment and because we don't have them at home we don't really say those words!

My daughter has also been taking a few independent steps but she can't manage more than a couple before falling. But she is trying and that is reassuring!
 
Welcome rebrrr :) I agree with the others even if it turns out to be nothing it's worth having everything checked out. You're welcome to post whatever you like :thumbup:

Thomas had his eye appointment this afternoon. Putting the drops in to dilate his pupils was a nightmare and he's been difficult ever since. His prescription has changed. One eye is better, one eye is worse. I'd completely forgotten this, I really should take notes but Thomas has an astigmatism.

Anyway, he's getting new glasses next Saturday. His eye doctor recommended Harry Potter style ones as he hasn't developed a nose bridge yet and the ones he has keep slipping down. We went for these lego ones :)

https://dqqzjdqmiszdy.cloudfront.net/sites/default/files/content_designer_images/frame_side_lego4.jpg

Only a few days until we go away no I have loads to do I feel stressed. Not heard from portage I assume she's still sick. I'm not waiting in I have a lot of things to do.
 
Welcome rebrrr :) I agree with the others even if it turns out to be nothing it's worth having everything checked out. You're welcome to post whatever you like :thumbup:

Thomas had his eye appointment this afternoon. Putting the drops in to dilate his pupils was a nightmare and he's been difficult ever since. His prescription has changed. One eye is better, one eye is worse. I'd completely forgotten this, I really should take notes but Thomas has an astigmatism.

Anyway, he's getting new glasses next Saturday. His eye doctor recommended Harry Potter style ones as he hasn't developed a nose bridge yet and the ones he has keep slipping down. We went for these lego ones :)



https://dqqzjdqmiszdy.cloudfront.net/sites/default/files/content_designer_images/frame_side_lego4.jpg

Only a few days until we go away no I have loads to do I feel stressed. Not heard from portage I assume she's still sick. I'm not waiting in I have a lot of things to do.

Love the glasses, spoke to you last time as I was struggling to get my son to wear his well he's got them on all the time :happydance:
He wanted fancy glasses when we chose his last pair but no we still need the thick plastic ones with rubber back so they not fall off.:nope:
His face is too thin and small nose so maybe next year :shrug:
Hope your keeping we'll take care :hugs:
 
Aww that's a shame :( Thomas outgrew his very quick hopefully your LO will outgrow them soon too x so glad he's wearing them!
 
Welcome rebrrr :) I agree with the others even if it turns out to be nothing it's worth having everything checked out. You're welcome to post whatever you like :thumbup:

Thomas had his eye appointment this afternoon. Putting the drops in to dilate his pupils was a nightmare and he's been difficult ever since. His prescription has changed. One eye is better, one eye is worse. I'd completely forgotten this, I really should take notes but Thomas has an astigmatism.

Anyway, he's getting new glasses next Saturday. His eye doctor recommended Harry Potter style ones as he hasn't developed a nose bridge yet and the ones he has keep slipping down. We went for these lego ones :)

https://dqqzjdqmiszdy.cloudfront.net/sites/default/files/content_designer_images/frame_side_lego4.jpg

Only a few days until we go away no I have loads to do I feel stressed. Not heard from portage I assume she's still sick. I'm not waiting in I have a lot of things to do.

Those are so cool! Where are you going?
 
Hi. I'm not totally sure if I belong here or not. My daughter is 23 months and recently been labelled as having mild general development delay. I have had concerns about her for the last year, and we have been seeing a paediatrician since she was a few weeks old due to feeding issues. As she still wasn't walking in Dec she was referred to the community paediatrician.

So we had a Ruth griffiths assessment a couple of weeks ago. On the day I was told my daughter was developmentally normal but just a late walker. So no further referrals or assessments, even though I was concerned about her understanding. But then I got the report in the post which painted a completely different picture. It put my daughter in the bottom 1%of children her age in all areas of development apart from one, where she was bottom 5%.

So worried call to the comm paed who said they hadn't realised how the scoring would come out and they want to see us in a couple of weeks. If my daughter still is 't walking there will be a physio at the appointment too.

I don't really agree with the results of the assessment. Not be because I think my daughter is on track, but because I think she is ok in some areas and she actually scored her best mark on language and hearing, which is an area I have concerns about!

I took it upon myself to print out the early years outcomes document from the department from education and did my own assessment. Generally speaking my daughter seemed to fit within the 'normal' range in the majority of areas. Her nursery have no concerns bout her development other than not walking. But I'm not sure if I am 100% convinced about their assessment either!

I'm not sure whether to just go with the comm paeds view and push for referrals for support in all areas. Everything I've read suggests the earlier the intervention the better. I've also downloaded some SALT toolkit stuff to start doing some work at home. I've also got massive guilt about working full time with all of this going on!

I really don't know whether I'm a fraud for posting here or whether I am just in denial! What would you push for in my situation? Like everyone here, I just want to help my daughter as much as possible and help to get her any support she might need. X

Thanks for reading that epic message!

I felt like a fraud too but everyone is so welcoming :hugs: I feel a bit melodramatic sometimes about Rory's delay because it isn't as if he has something like brain damage but the guilt and loneliness you feel as a parent is still there and it's so helpful to be able to talk to people in a similar boat. I don't know what to suggest you do with your daughter but what is best is probably to go with what your gut instinct tells you is best. If you think she needs extra help then push for it!
 
Happy Mother's day to you UK ladies (I know its a bit late on your side, but its 1030 here!)
 
Awww I didn't even realize it was mothers day across the pond ;) Happy Mothers Day Ladies!!
 
So we had our big developmental assessment today. Overall, it was positive. Diagnosed with a mild Global development delay with significant speech language delays. Receptive Language was estimated at the level of a 13 month old, but his expressive language is better at around 16 months. At this point it's being recommended that he be followed by a pediatrician rather than a GP to monitor his progress and to continue with Speech therapy.

That's us in a nutshell :)

Hope everyone is doing well!
 
:hugs: bumpin. Getting the numbers sucks but now you know what to focus on. He will do great, I'm sure. It will just be a little extra work;) Bring on the speech therapy!!! I love going to DD's speech therapy, we do two sessions a week and I really look forward to them. Does he like sign language?? Lots of kiddos will start to speak words that they first learn to sign. Has anyone said if he has oral motor issues? Like does he chew well? Does he stick out his tounge? Does he touch the insides of his cheeks with his tounge? I know tons of exercises to help with that stuff, and some of them involve candy;) I'm happy to share anything I've been taught by DD's therapists in the last 6months :hugs:
 
Thanks! Other than the 13 month part, I'm happy with it. It was a bit of a blow, but it could have been worse.

I don't think he has oral issues, he is a good eater, and can stick out his tongue. He doesn't seem to have issues with texture or anything. I'm calling the SALT center tomorrow to find out when we are being seen. They said 6 weeks, back in January. It seems that they have forgotten about us :(

How are you feeling Essie?
 
I hope they get to him soon. Waiting is crappy.

I'm feeling pretty good which is worrying the hell out of me. Haven't been able to find a heartbeat on my doppler and my pregnancy symptoms are faint. Scan tomorrow at 1pm to see how things are going. Hoping for the best but prepared for the worst.
 
Aww, honey. It might be ok still! I couldn't find little miss until 12 weeks! Keep us updated!

Nope. She's insistent on remaining transverse... brat!
 
Saw a wiggly lil babe with a strong heartbeat today :happydance: Lil thing was moving all over the place :)
 

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