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

[sequeena]

It's meant to be one hour but they cut it this week. There's 3 kids T is the youngest. We stay with them and getIinvolved. They have a theme each week and this week's was body parts x

 

[essie0828]

That actually sounds nice despite the absence of pram access. I learn TONS at DDs' sessions. I love it! She's picking up new words now and has started speaking to the therapist after about the 5th session I kept telling them she was saying this and that at home but never any proof. FINALLY, last week she spoke and said "mo bub bub" (more bubbles) in front of just about everyone. Granny's included

 

[essie0828]

Hi ladies apologies for a longer absence. Sequeena I'm pleased to see Thomas doing so well after his operation! I have been trying to follow on FB when I've had internet access and fingers crossed his hand heals up well! I also read that article earlier and it's so true isn't it. I think feeling angry and bitter is just one of those things that goes along with children who maybe aren't quite the imagined norm! At least that's what I tell myself. That I am lucky compared to some people and it's okay to be bitter about things sometimes.

Portage has been going really well for her, we have a large list of targets but they are so relevant to her I can't help but feel hopeful that if she can achieve these things she will at least be a little closer to being caught up! Unfortunately we've had a few weeks of illness again. A UTI followed by another hospital stay whilst they tried to work out what was wrong (tonsillitis this time it turns out) which came on top of being in myself for possible early labour (it never rains it pours doesn't it!). It meant we missed halloween so little Miss had to dress up later when she was recovered and back at home, but she still had a good time. We seem to be hitting the point where she's getting frustrated now at not being able to communicate as well as most of her peers and it's resulting in more tantrums and some violent behavior (hitting, pinching, scratching, biting) which is difficult to deal with although fortunately it's mostly been aimed at me and her Dad so far.

On the up side we have her MRI scan in 2 weeks! I'm a little nervous about the sedation for her, but I know it will probably be harder for me than for her and it's for the best as there is no way she can lie still for that!

I have to admit I'm at the point of pregnancy now where I'm starting to worry a little about baby #2. I mean my DD is perfect and I love her so very much, but there is no denying she was difficult from birth with feeding and breathing difficulties etc and I'm so hoping that this time is easier. Her being in hospital again really made me worry about how I will cope when her brother is here too. I guess all we can do is take it one step at a time. Anyway sorry for the rambling update! Hope all is well with everyone here!

Hope the MRI goes well. I'm sure to have questions
or you afterwards. We are thinking about going ahead with the MRI for Hayley sometime next year. The sedation is a concern, but DD was fine with the short sedation she had during the ear tube surgery.

Hun I can understand being worried about coping with 2, Im still to chicken to go ahead and try for 2 Hayley was difficult. Every newborn is for a bit, some for longer, but you got this Honestly though hun, I would be crapping myself : scared if I were 35weeks pregnant right now. You're not alone there

 

[Feathers]

Oh well anything you want to know afterwards Essie just ask! I'm really hoping it doesn't show any brain damage I mean whilst it would be nice to have definite answers or labels or reasons for things, I think if they find anything it will be hard to accept particularly given this is pretty much the hospital's fault for their treatment during labour.
Apparently having my c-section sometime week beginning 2nd December so under a month left!! I'm nervous about that too given what happened last time but at least I won't have the labour part this time around.

 

[moggymay]

Sequeena that sounds similar to something we did at T's age. The group sessions we to help the SLT's to get to know the children before they begin 1:1 sessions. Definitely worth it because with the limited funding these days it saves the 1:1 sessions for when he will get more out of them....you may find the group sessions help a little, they did for us, especially in realising we weren't alone and that there were plenty of folk rooting for my son to start to speak. The 1:1 sessions when we got them brought him on further, since then we have had to keep going with the techniques and games she played with him/taught him and us. His speech is now quite wide and varied, his pronunciation is weak as he doesn't use the hard consonants correctly when they're at the end of a word.....to hear him say Bee/Beak/Bean etc all sound the same Bee....we are working on it but he is progressing. The thing they say about turning 3 and turning the speech tap has been true for us....

 

[sun]

Sorry I haven't been popped in for a week! I miss so much - now I have to read back and catch up. Hope everyone is doing well. Both my kiddos have birthdays around now (daughter was last week and son is this week) so it's been busy. And so exciting that over the past week my daughter REALLY started copying words and trying to talk more. She is asking me what everything is! She isn't SN, but thought I would share as it's so exciting. My son never really went through a phase like that. Now to catch up on everyone and their LOs! xo

 

[sequeena]

Thanks moggy. Thomas has had 1:1 sessions so I don't see the point of these group sessions other than there not being enough money in the pot.

Happy birthday to both your kids sun!

Hope everyone is ok. Thomas fell a few days ago and broke his glasses so the optician is ordering him new lenses.

He's been quite well behaved lately, he's still demanding but at least I'm not dealing with head banging tantrums 10+ times a day. He was so good when we went food shopping that I bought him a Thomas the tank engine magazine.

Tomorrow I need to ring the hospital and get them to look at his cast. It smells so bad I think he's been putting food down there.

 

[wantabean2]

hey ladies sorry I haven't posted in a while.

so Cameron had an appointment today and after quick assessment he is waaay behind on his development and pretty sure he is on the AS. Finally gonna start to get some answers and support. pretty excited to get started tbh

Cameron has had MRI and EEG so if anyone needs to ask any questions I can help

hope your all well and happy birthday to all the little dudes and dudettes that have birthdays around now Camerons 3rd birthday is on Monday :0 how did that happen? lol


xxx

 

[RachA]

I seem to be struggling to come in here at the moment.

Hope everyone is ok.

We had Esther's 6 monthly review last week. The good news is that she hadn't slipped any further behind so she is developing at the correct rate but she is still 18 months behind in her speech and understanding and around 12 months in her motor skills and social skills. We are pleased with this. It would if been nice if she'd of caught up a bit but that was a hope rather than a realistic aim.
The other thing that came up from her review was the results of her genetic testing. Her tests showed that she is missing a bit of a cromosome (#2) and has an extra bit on her x cromosome. In view of those results oh and I agreed to be tested and apparently I have the same bit missing. This means that it's unlikely that this defective cromosome is what's causing Esthers delay as I developed 'normally'. We are being referred to a geneticist as we now need to find out if there are any long term issues resultant from her odd cromosomes. Apparently if we didn't get referred now at some point we'd have to go as Esther will have to be told there is an 'issue' with her cromosomes.

Steps have also been started to get her statement underway.

Generally she's doing well. She's adding new words daily but she still doesn't really use them which I find frustrating!

 

[bumpin2012]

Hi ladies, just checking in

nothing new to report, really. G is walking, still not talking, but making sounds. we have a pediatrician assessment on the 29th, and hopefully speech therapy in about a month.

May have good non child related news. hubby is military and we found out yesterday that he is probably being posted in June ( they are waiting for baby to be born) but it's looking like we're being posted to the prairies, within a 3 hour drive from my mama! Right now it's a 7-9 hour flight to visit, so I'm ecstatic, but worried how this will affect Gs progress.

bug is doing well too

hope everything is well.

Rach: hope your appointment with the geneticist brings some answers/ insight. I'm happy to read that she's continuing to progress

feathers: I'm starting to freak out about managing 2 also, and I've got until May! we can do this! ( Right?)

 

[RachA]

That's great news bumpin-when you are a long distance flight away then a 3 hour drive feels like nothing
You may find that moving doesn't hamper his progress at all.


We have started looking a schools for Esther as we need to decide by the middle of January. We went to our first one yesterday. It's our catchment area school and we know that it is a good school anyway. It was interesting as we met with the head teacher and also the deputy who is also the special needs coordinator. We had to give a potted history if Esther and what needs she has. One thing that came out of the meeting was that Esther likes to watch other people/children and learns from that rather than being told what to do. She is a very visual person. Because of this we've realised that putting her in a school surrounded by children who don't use words to communicat really wouldn't help her at all. Sending her to a 'special needs' school wasn't something that I wanted to do anyway but it's something my mil has bought up on several occasions citing that if she goes to main stream schools she will be picked on!!!! I'm glad my gut instinct has been proved right. I'm not against 'special needs' schools as there are definitely children who need them but I've never felt this option to be one we should seriously look into. Whichever main stream school we pick will teach her in many different ways-sometimes as part if the class, sometimes on a total 1:1 and sometimes in a small group

 

[sun]

Rach - My son started at mainstream school in September and so far our experience has been mostly good. My son learns visually as well and really gets alot out of the interactions with the other kids at school. He also takes the school bus and LOVES it. The only issues we're having is that he can be very sensitive to things he sees and I (and the teachers) can't always figure out what is upsetting him. I know from experience that it could be something simple that he saw and interpreted a specific way, but he usually isn't able to verbalize or communicate the experience. But that would be a problem regardless of where he was. Mostly I am happy and he is learning so much. He even sang a song (the tune, not the words) which is something he never has done. Very exciting!

Also has anyone had their child assessed by a child psychologist? We just got a call for a referral next month and the appointment is 2h long! Not sure what they will be assessing or doing there.

 

[sequeena]

Hi everyone, sorry I've not been around I've been really busy.

Sun Thomas hasn't been referred but he has just had a 2 hour appointment with his paediatrician and he was having exhausted. Good luck!

Thomas' cast came off yesterday he has a splint now for boisterous play which he'll wear for 3 weeks. His thumb looks good. He saw his paediatrician today. No melatonin he's being referred to a geneticist and another occupational therapist amongst other things.

Thomas will start a sleep clinic in December.

 

[sun]

That's too bad about the melatonin - I know a few mums who find it really helpful (though their kids are older like 5 or 6)
Glad to hear he's starting a sleep study though - hopefully they'll be able to help. And yay to having the cast off!

 

[bumpin2012]

hopefully a sleep study will help you all get some sleep

we start speech therapy December 5th

 

[sun]

hopefully a sleep study will help you all get some sleep

we start speech therapy December 5th

Wow at only 18mo! Can I ask what province you're in? Where I am it's a pretty long wait (like 9-12mo) from the point where they are first concerned, so most people we know started at 2.5 or so. We were in at 20mo, but B couldn't move his mouth properly or make sounds.

 

[sequeena]

Thomas was referred for speech therapy at 17 months and started at about 20 months. Good luck bumping x

We were also told he has hearing loss in both ears alongside glue ear. Why didn't anyone tell me!

 

[sun]

Thomas was referred for speech therapy at 17 months and started at about 20 months. Good luck bumping x

We were also told he has hearing loss in both ears alongside glue ear. Why didn't anyone tell me!

Did they recommend aids or treatment for him? Hearing properly might really make a difference. It can affect so many things - my friends 6yo was diagnosed with a learning delay/disability and after a year they found that his hearing was severely affected on one side and moderately on the other. He made HUGE improvements in several areas once it was treated. Seems crazy that they didn't mention it!

 

[sequeena]

We didn't get to finish as she had other appointments so I'll ask when i go back to audiology. She must have got it wrong surely they'd have told me.

 

[bumpin2012]

hopefully a sleep study will help you all get some sleep

we start speech therapy December 5th

Wow at only 18mo! Can I ask what province you're in? Where I am it's a pretty long wait (like 9-12mo) from the point where they are first concerned, so most people we know started at 2.5 or so. We were in at 20mo, but B couldn't move his mouth properly or make sounds.

the wait list here is about 9 months. I had him put on the list before we had an identified issue. ( because I'm one of those crazy mama's) I had him assessed at 10 months because I was concerned about his development and our early intervention coordinator suggested getting him on the list, just in case. so I'm really glad I did it back then I'm in nova Scotia!


sequeena, I would think she has T confused with someone else. it seems odd that no one has mentioned this to you before...