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

[sequeena]

Thanks for explaining! Bless him he sounds lovely good luck for your scan! Our son is due to start genetic testing soon (had genetic counselling in january) as they think Thomas has a genetic condition too. I'm no doctor but with lots of research I think he may have 18q deletion syndrome.

 

[Reid]

Sequeena that's great thomas will be starting school. What is statement exactly? I've seen it on quite a few threads but don't really no much about it.
Hi to both newbies and welcome.

I had a catch up with my son's nursery today really great feed back on how he's settled in. He had his 1st outing yesterday and done great followed instructions and no kick offs when leaving the park they also had a wee birthday party for him showed me the pictures of his day. They said he's socialising better now taking a liking to 2 wee boys they seem to like play together . Speech therapist should be starting to work with him next week now she's back. Really delighted with how it's all going since he's started this nursery.
He's still throwing the mega the hissy today's was because he couldn't get his papas garden hose and he really went off on 1 xc

 

[sequeena]

Aw bless he sounds like he's doing really well

A statement or rather a educational health care plan as it's now called is a legal document that sets out what my son's problems are, what he needs, and what the school must provide to help him.

 

[annanouska]

Hi new mummies ...,regarding the scripting or echolalia, my son did and still does a lot of this but he has got a fair bit of normal language with it too. I think of it as a positive as it shows physically capable of speech

Such good news about the EHCP sequeena I don't know when or if ours will be started, nursery observe his seizures a fair bit so surly he will need something for that ?

He's quite chatty these days but still very disordered and does things a competely round about way!

 

[Reid]

Aw bless he sounds like he's doing really well

A statement or rather a educational health care plan as it's now called is a legal document that sets out what my son's problems are, what he needs, and what the school must provide to help him.

Aww he is bar these tantrums he's doing great this new nursery has really been amazing in helping him move forward. Ah great that's brill then for Thomas you no his needs will be met then ☺.
Have you had any progress on the sleeping xx

 

[Starry Night]

Emma - Hi! Your guy sounds adorable. I'm picturing him making you chase him with his little cane. ha ha. Kids are still kids no matter what and can be fun and drive us crazy at the same time. The kidney cysts sound stressful but I guess you can cross that bridge when you get there. One step at a time.

anna - I am thankful for some scripting as it helps us know what he wants. We have taught him to memorize some key phrases. He is still tough to understand though. Most people have to ask us what he is saying and babble is still his default. Yesterday he was having a hard time and all the words he normally could say on his own were coming out all slurred. I could tell that was upsetting him. I'm hoping speech therapy can help with his enunciation as well.

sequeena -I'm glad things are getting sorted out with Thomas' school.

lynne - glad to hear your son is settling into nursery and that he's making some friends.


afm - stressing a little. The province of Manitoba where I live has a government-funded ABA program BUT you have to get into the program before the age of 5 or else you can't get in at all. It's so ridiculous. Our son didn't get referred for testing until his 3rd birthday, just was diagnosed a few weeks ago and turns 4 in a few weeks. The wait is so long he probably will age out of the program before he's off the waiting list. IF he gets in, he will be able to graduate to the school-age program. I think it's so silly that the school-age program won't take in those who were diagnosed later. You HAVE to go through the preschool program first. And private ABA therapy is $100 a session. Not sure DH's work benefits will cover it. And if so, will only cover $1000 a year. So yeah, not much.

There is a RDI therapy I can apply for that is free for children with low verbal skills. I think my son is over-qualified for it already but no harm in trying. It's a 2 to 3 year program. My DH and I are attending the fall seminar session we have to take before applying. We technically could have squeezed into the spring session (they had exactly 2 spaces left) but we found out about it 3 days before it started and it was during the day so not enough time to make arrangements for the kids. Though DHs' work is being AWESOME. They were willing to give him the time off because "family comes first".

 

[alibaba24]

my daughter also loves these youtube videos..... just why?!

I am glad to see apparently alot of kids are into them

as much as they irritate me the one good thing I Can see from them is that they might benefit her language development because the people are speaking the actions so my daughter can put the word to the action....

still I do not like them

 

[sequeena]

Egg surprise openings are apparently the most popular things on YouTube! !

 

[alibaba24]

Egg surprise openings are apparently the most popular things on YouTube! !

yes the eggs!! ugh!

 

[sequeena]

Sorry Lynne I didn't see your post. No the sleeping is still awful. I can't get him to bed at a decent time he just isn't tired at all. lots of waking too still. However he has been dummy free for 4 days now

 

[Starry Night]

I've never heard of those videos until I saw people talking about them on this site. I still haven't looked them up. My children are thus far totally unaware of them and I aim to keep it that way for as long as possible. My son's closest friends live out in boonie-land with no internet so he won't be finding out about it from them. ha ha Few more years until school yet too.

 

[RachA]

Egg surprise openings are apparently the most popular things on YouTube! !

yes the eggs!! ugh!

I don't get why they are so taken with them. Esther loves them too (mind you so does my 7 year old!)


Welcome to the newbies

So good to hear about the statement Sequeena-you can breathe for a bit now.


Esther's just been reassessed for her statement and they are keeping it the same which is a relief. We are however trying to look into what we are going to do with her over the summer holidays. She currently gets SALT every school day so she'll end up with a 6 week break with no SALT. I think she'll forget stuff over that period so am trying to work out what we can do.

 

[sequeena]

Does reassessment happen every now and again or only if something changes? I'm glad Esthers is the same

How does this sound? I've not seen the statement yet so it may not be set in stone but their report said they advised 6 hours of therapy a year. That's 12 weeks if it's half hour a.session. It doesn't sound much to me but is that normal?

 

[RachA]

As far as I'm aware they reassess every 6 months until they are 5 years and then it's every 12 months.

It depends on what else the statement says-ours states that Esther needs 27 hours 1:1 support at school. It also says things like: she needs SALT on a weekly basis.

You can disagree with what they've given you-they will send you the draft statement to sign. Go through it several times before you sign it and think about it lots. There is a section for you to say that you don't agree with it. The first couple of times I read it I totally missed the 27hours part!

 

[Reid]

Why do people say stupid things....I will not be held responsible for the next person that says oh once he's talking you'll wish he'd shut up.. well no I won't I long to have a conversation with my son for him to say mummy I love you.
To make it worse it came from someone who's child was speech delayed to someone I thought would understand 😡

That's great RachA can imagine that would be a weight off you're mind xx

 

[RachA]

People just don't think. And the trouble is that unless you are still living with it every day then you forget how you felt as time goes on. That's probably how she feels now that her child is talking and doesn't understand how different it is for you.

 

[bumpin2012]

Hi starry night :wave:

Sequeena, starting school! Eeep! What testing will they do? They did a genetic blood panel on G, which showed nothing. Is the 18q deletion something that they can test for? I've never even heard of it. They were using G for fragile X, which came up negative.

Tubes went in on Friday and he's doing REALLY well. He chattered non stop from about 3am until 7pm Saturday. He's also slept through the night for the past 3 nights. His record is 5 nights I'm scared to hope for a good night tonight!

 

[Starry Night]

Hi, bumpin!

sequeena - 6 hours does not sound like a lot but I have no idea what is standard.

afm - feeling really pissed at the world and everyone. Last weekend, over Easter, we were with the inlaws out west. The day before we left my SiL called to say my older niece had the chickenpox. After calling our doctor, we decided to make arrangements to keep my niece away from my daughter as my DD hasn't had her vaccination but let the niece play with my son because he has been vaccinated and we let the other kids have free reign with my daughter. My SiL's kids have been vaccinated so we were kind of thinking it was bad luck that one got the pox anyways but that the others would likely be OK. However, two days in, my SiL thought the pox were so mild that she would take my niece to church and exposed her to my daughter.

Now tonight we got the call the other niece has the chickenpox. So it seems to be a virus virulent enough to break through the vaccine. Gah! My son has had the vaccine so it really would just be a few spots, nothing major. But my 10 month old.....Really stressed! And on top of that, my son had three different therapies starting next week, two of which are time sensitive and can not be rescheduled. And for his speech I've been waiting since last July for it to begin. My kids won't be clear of the 21 day incubation period until May.

Just furious. My BiL and SiL's kids are ALWAYS sick and we are always catching something stupid when we go over. And this time the timing really, really sucks. I feel furious with the stupid genes my husband's family have. They're always sick. I have never gotten sick as often as I have since marrying into it. I guess it's not their fault. But I'm just pissed.

 

[Starry Night]

Why do people say stupid things....I will not be held responsible for the next person that says oh once he's talking you'll wish he'd shut up.. well no I won't I long to have a conversation with my son for him to say mummy I love you.
To make it worse it came from someone who's child was speech delayed to someone I thought would understand ��

That's great RachA can imagine that would be a weight off you're mind xx

I still get that and my son is nearly 4 and mostly babbles. I still get the "Oh, I know so and so whose kid didn't talk until [x] and now they won't shut up". It is concerning that my child isn't speaking properly. And also, just because a kid isn't speaking doesn't mean they aren't LOUD. My son is always babbling and scripting (which is still not clear and I need to translate for others) and yelling and laughing and screaming, etc. And I can tell when he's being rude and defiant. I'd rather he talk back correctly.

I also got that about walking. "oh you don't want him walking, then you have to chase him". He didn't start walking until 21 months. i was starting to get SERIOUSLY concerned that it wasn't going to happen at all and people were saying I didn't want him to walk! yeah, carrying around a 35 pound child (at the time) everywhere I went was a dream come true. They even said it to me in front of a woman whose daughter has celbral palsy and didn't walk on her own until about 10.

They just don't think about what they're saying.

It's like when my dh and I were told after our first m/c that we should be glad we don't have kids yet (and they knew about the m/c). Just dumb.

 

[alibaba24]

Hi starry just a quick post. My daughter caught pox at 10 months old and they were bad she was COVERED but she coped with them rather well. a few rough nights of no sleep as she was so uncomfortable but overall ok. Once the spots are out and they blisters have burst and gone "scabby" then they are no longer contagious. Over here in the UK anyway. my oldest who also has had them was allowed to go back to pre school while spotty as long as they spots have crusted over