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

[annanouska]

Hi everyone. Hope everyone is well, we are ok nothing new going on. We have our pecs cards sorted trying little and often but he doesn't seem to get it just yet

Is it normal to feel on a complete emotional roller coaster? I'm ok with things, I still love my ds obv and know he loves us too tho he rarely will hug or kiss etc. I just feel like its my fault right now. I don't know why I just think I should be doing more, playing with him more reading more etc to him but he doesn't like it. Very rare will he let you play with him, he can't sit still for a book. I just feel I'm not doing enough to help him

Pointless but have any if the little ones stopped playing with toys? My little guy mostly wonders around opening and closing doors or doing random things. He's not completely in a bubble he does play at tines just seems totally uninterested in toys. His fave thing ATM is a cd in a cd case

 

[moggymay]

Have you tried a drawstring bag with a few different toys inside....some animals or some random items starting with the same sound....a book, a ball, some bubbles, something blue, a bowl etc so he can hear the sound but they are all different, leave the bubbles to the end and after say 5 mins of him playing if he is getting bored or losing interest let him help blow the bubbles, its good for the muscles that help with speech

We used to sing with ours..."What is in the bag today, what is in the bag today, what is in the bag today, what's in the bag today NAME" You can learn the signs for what and bag and today and sign as you sing.

I miss doing it now as it was fun making the bags for the different letters and stories. We only have a few now to accompany a couple of stories.

 

[RachA]

Hi everyone. Hope everyone is well, we are ok nothing new going on. We have our pecs cards sorted trying little and often but he doesn't seem to get it just yet

Is it normal to feel on a complete emotional roller coaster? I'm ok with things, I still love my ds obv and know he loves us too tho he rarely will hug or kiss etc. I just feel like its my fault right now. I don't know why I just think I should be doing more, playing with him more reading more etc to him but he doesn't like it. Very rare will he let you play with him, he can't sit still for a book. I just feel I'm not doing enough to help him

Pointless but have any if the little ones stopped playing with toys? My little guy mostly wonders around opening and closing doors or doing random things. He's not completely in a bubble he does play at tines just seems totally uninterested in toys. His fave thing ATM is a cd in a cd case

I totally get the emotional roller coaster thing!


Out if interest does you son have lots if toys that he has easy access to? If so thus could be the reason why he wanders around and doesn't actually play with anything. We found this with E-we had loads of toys (both hers and her brothers) and she rarely played with anything. We were advised to put most away and leave maybe two different things out for her to choose from. We left out the Duplo and a box of jigsaws. She then started playing with either 1 or those two things.

 

[RachA]

We have a meeting tomorrow (later today I guess!) with someone to discus the results of E's genetics test. Not worried about it but think it should be quite interesting. At the moment they don't think her delay is anything genetic as u have the same abnormalities that E's got and I wasn't delayed at all.

 

[annanouska]

good luck for today rach.

I will try the bag idea with him, he probably will get angry that I'm not doing it right then try and throw it all!

We have a little stack of three boxes with toys in in corner of room. He can only get the top items out so I do the put a few things out for him, eg trucks or books or a happy land thing. He still doesn't rally do anything I've tried to play with him to show him but he prefers to throw things ( unless its a ball ) or drive over them with his ride on BMW think I will raise it with his next clinic in July.

His favourite activity is being outside, honestly he just loves being out, he likes running up and down hills too...how I'm still fat amazes me hehehe

We have hearing test Wednesday and EEG Friday I do wonder if he has glue ear at times as his ear looks quite funky and he gets really irritated by it if it gets wet but his hearing seems to be really good.

Hope everyone is ok a few familiar faces missing recently

 

[bumpin2012]

how did your meeting go Rach?

life is crazy here! Everyone is doing well though

 

[sequeena]

Hello everyone sorry I'm not around. A little swamped right now.

hope it went well rach x

T's doctors had a ecs meeting (educational care something I think). He's being put onto a pathway which is when he will see an OT. From what i was told this is also how they'll do statements from september so it seems to be a good thing that he will be on it.

 

[sequeena]

They use a box at SALT - tap tap box tap tap box tap tap 'name' what's in the box?

 

[annanouska]

glad you are ok sequeena and bumpin, hope Essie is ok an don't had any more complications

I've seen you say before sequeena they do patience first at salt, I can see him being totally un helpful with the box or bag just yet I'm going to try them, right now he would just either gt up and walk off, try and steal the box and descend into chaos if he can't or open it and gasp he's so funny so expressive with gasping when he wants but makes no attempt for any more. I'm trying to tackle his routine thing ATM we have little visuals he likes x

 

[essie0828]

Hi ladies

Thanks anna all is well here. Finished my last course of antibiotics and had thyroid meds upped. Starting to feel a little more energetic.

DD and DH are battling seasonal allergies. Pollen counts are really high and even I have had itchy eyes lately. Other than that DD has been making wonderful progress. All of her therapists have noted her improvements and complemented us on our work. She actually said "Hi" to her First Steps speech therapist for the first time. We've been working with this lady for 8 months Everyone was thrilled though. DD does ok with the pecs but will prefer to point to the actual object and sign want. She's signing want and go a lot more. Kid loves to go places or to just be outside. Ordered her a sand and water table for the patio. Mabey we get lots of standing play out of it.

 

[sequeena]

oooh we have a sand and water table for Thomas he adores it. It's even better if you can get hold of coloured sand! Large marbles are good too (obviously supervised).

 

[RachA]

Thanks all.

It was an interesting appointment which has left me feeling a bit odd if I'm honest.

We were told it was an info meeting and didn't have Esther with us and we should if taken her lol. So we have to take her again!
The genetics dr went through everything with us. Basically E (and me) has an extra bit on either her x or Y chromosome (can't remember which girls have lol). This extra bit isn't effecting anything. Then she has a bit missing (again so do I) on chromosome 2. This missing bit could well be causing her speech delay but at present they can't say 100%. All they know is that all the children they test with delays have this bit missing. But obviously people can have it missing and not have any issues-like me. If you have it missing then you are at a much higher risk of having a delay.
Also if she has a child with someone else and they gave the same bit missing then that child has a 1in4 chance if no delays, a 2 in 4 chance of minor delays and a 1in4 chance of the child being very seriously delayed.
The bit that left me feeling rubbish was that external factors will of played a part in her delay. So basically a certain part of her delay is down to how she's been parented. I know it's not as simple as that and I don't think that's what she was saying but that's how it made me feel.
I'm feeling ok about it now though.

 

[bumpin2012]

bah. I dont believe in the "if its not genetics its parenting" thought. G had nothing different on his genetic testing. He's just delayed. I will say its 'parenting' if Miss J has the same delays, and so far, she's doing things on schedule (as much as can be done at 1 month old!)

Your not a bad parent because your girl has issues. Your an awesome parent, because you recognise the issues and are getting her the help she needs.

 

[RachA]

Thanks for that bumpin.
I guess it's not as simple as it being down to parenting and I don't think that's what she was saying. More than external factors effect how prevalent the issues are. So if she was the first born rather than 2nd that MAY change things ever so slightly. There are probably a million little things that could of effected her.
I do however know that there are things I should of done differently but I know there is no use thinking and worrying about it. I was very anxious to make sure my son didn't feel pushed out so for the first 8 months I would feed E and then put her down in the cot/in her bouncy chair/on the play mat-so the interaction between us was really so minimal. She was a very easy baby and very content so I just enjoyed the fact she didn't whinge when I put her down. However I did carry her a lot-rather than use the pram I quite often carried her and when I was at home without D I would arty her around most of the time. I didn't talk to her much though-D progressed well even though I didn't talk all the time to him so I didn't see the need.

I do think a major stumbling block for her has been the infrequency of her speech therapy. She's has 4-6 months between her blocks of sessions and her sessions were just for 6 weeks-a total of 3 hours each block. I think had she been given it more frequently then she would of progressed more.

 

[sequeena]

Rach massive hugs. As already said it is not your parenting. Anyone can see you dote on your children and do everything you can for them. Just because they can't find something right now doesn't mean that there is not a specific reason

I'm starting to think SALT is a joke. I know they expect us to carry on the work at home which is fine but when you see a therapist a handful of times a year how are you meant to carry on for the rest of the year?

It is HARD trying to get a child to speak. I see children all around us coming out with new words with seemingly no input from their parents yet I sit with my son daily and sing songs, make up games, repeat the names for things over and over and it seems to go in one ear and out the other. How the hell do other parents manage to teach their children how to speak?!

But you're damned if you do damned if you don't your son has progressed fine of course you'd do the same with Esther. Honestly I think this would have happened no matter how much or little you spoke to her.

How is everyone doing?

Thomas has oral thrush he's had 5 courses of antibiotics in about 2 months so I guess it was a matter of time.

He also has sores/ulcers on the insides of his cheeks because he's been biting them I'm hoping it's a habit thing and he's not noticed he's doing it but honestly I think it's another form of him hurting himself. He's recently started biting his lip when he's upset so it's possible he's biting his cheek too. I didn't know he was doing it he seems to feel no pain at all and they look very sore. So I'm alternating thrush gel and bonjela. He is not happy about my finger being in his mouth and neither am I!!

Monday morning Thomas' portage worker and I (and of course Thomas) are checking out the nursery that O gam i gam (charity that provides support workers) has suggested. They veto'd another one we picked because they couldn't put a support worker in there. Anyway, fingers crossed it goes well. It will mean Thomas will get another 5 hours a week in nursery so 7 hours in total. I think that is possibly his limit. He struggles with 2 so we will need to go very slowly.

 

[essie0828]

Sequeena I second the thought thst it's damn hard to teach a child language. It's very hard and without the extra therapy it has to be harder. Salt seems so minimal I think they should offer you guys more than 6 week blocks. Racha you to. That's ridiculous to offer such little support and then say the kiddos development was affected by parenting. Hayley gets 2 one hour speech sessions a week along with 2 one hr physical therapy sessions and one occupational therapy session. That's 5 hrs a week not in blocks through out the year. If we didn't have that I would be lost.

 

[bumpin2012]

ideally, yes, all the interaction we give our children helps them. G was a fussy " don't even think of putting me down" kind of child. the only way he got any tummy time was on my chest. that boy had constant interaction, and he's still delayed. I really don't believe that there is anything you did our didn't do that has you on this road E is exactly who she is meant to be.

 

[bumpin2012]

we're all good here. miss J is gaining weight like a champ. I was getting worried because she seemed so unsatisfied with breastfeeding. well I head nothing to worry about, she is up over 2 lbs since birth... G is doing so good as a big brother. he adores his sister to the point of being a bit over bearing...

 

[Feathers]

Hi ladies apologies for the long absence, trying to read and catch up with you all! I agree Speech and Language is so hard! I'm on the Hanen course right now which is all about how to communicate with your child (honestly do they think we don't?) and it's been...well it's very up and down. Whilst I'll take any and all advice on how to help DD, they turned up to film on a day when Olivia was pretty sick, she wasn't communicating at all, just sat there holding her bear and ignoring everything. Of course we tried our best to get any communication from her (signing, body signals, sounds) and then we got told we were talking too much and we should wait for her. I honestly felt really cross because if we waited for her on a day like that she would just sit there and we'd be waiting ALL day. Surely we should create opportunities for her to communicate rather than just waiting for her to make one when it's clear she isn't going to. Frustrating! I don't think they know how hard it is to try and make everything into a positive communication opportunity when (like a PP said) other children around them just pick it up naturally.

Equally frustrating is the fact we have a fantastic centre for helping children with Speech and Language delays. Sounds great we thought, we know lots of the children whose parents are on Hanen attend the nursery there where they get specialist help for 6-8 months, they have fantastic success rates with children who don't speak at all. Then comes the stinger, Olivia cannot go because they will only take children who JUST have speech difficulties. Because she has other development delays (even though her speech is the worst one) she cannot go and misses out on a service that really could make a difference for her Im just really annoyed about it but there's nothing I can do.

We've had a horrid time with constipation and fecal impaction (honestly its been one of the worst things yet) and it's led to some toileting issues. She is now terribly upset at nappy change times despite the fact we've cleared the impaction, obviously it's sticking in her mind which isn't good because toilet training isn't going well as it is.

Our positive news is we were successful in our application for DLA for her which means we'll be getting some extra money to buy things she needs and take her more places I'm torn between being pleased about her getting something to help her and sad because she needs it. But then isn't life always like that with children with extra needs?

 

[annanouska]

feathers the dla is fab news, it can help I get resources and activities to help your child which is brill I've never applied or thought of doing so just yet I don't think my LB is " disabled" enough yet

Rach I felt really angry for you reading that. How wold it be different if she was the sole child etc? My boy is the only one and still has difficulties. I'm well educated enthusiastic and engaging with him, he's still a zombie quite often . I also did the feel out down not carry around constantly baby phase. Maybe I should have been more of an attachment style mummy maybe that would have helped but he hated it. He hated hugs he hated being rocked and held etc so I can't force him.

Essie nice to see you, you always brighten the place up

I second the language discussion. On our assessment I was told to make him ask with words for things not point....no tip on actually getting him to say a word! He periodically parrots now but very rare and will oly parrot go and no.

His hearing test was all clean no issues. We have the early years team coming to our house next week, no idea why to be fair xxx