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

[annanouska]

We have two Bengal cats. One is pepper (girl) the boy is riddick. They had never seen a child let alone baby before we had DS. They adjusted rally well and are good with him. He likes to stroke them and brush them. Play Wight ehir fish in w stick toy and I put food in the dishes and get him to carry it to their feeding place. Some,times he is not co operative but mostly ok.

We are getting a home visit from the epilepsy team as he went into status the other week so going to get a plan together for rescue medicines. His epilepsy is quite unpredictable he could go weeks relatively stable then have mass problems, I'm used to it now tho to a degree. His speech has come on well tho not there just yet he's just quite "odd" hates certain noises very sensory, has a meltdown if he is disturbed when engrossed in an activity, eg pouring sand at nursery a don another child joins him he can't cope at all

We went out yesterday with a group and he was speaking loud (no idea why he often talks loud but when anxious he stops speaking or whispers) and he got up for a second and his friend sat I his seat....q meltdown. I explained and signed friends and. Friends share as although I know giving him the seat wok,d be easier it was for 5 mins and in school he will face these issues so I. Trying to gently expose them. Everyone else stood up?! Stood up properly and came near him and just stared? I was so upset I wanted to snap but lucky we were going. Thing is the others I. The group have downs or issues which are quite obvious and when they aren't coping people, are so kind and understanding. Sometimes I want to have a neon sign over his head, please go away! X

 

[alibaba24]

We have two Bengal cats. One is pepper (girl) the boy is riddick. They had never seen a child let alone baby before we had DS. They adjusted rally well and are good with him. He likes to stroke them and brush them. Play Wight ehir fish in w stick toy and I put food in the dishes and get him to carry it to their feeding place. Some,times he is not co operative but mostly ok.

We are getting a home visit from the epilepsy team as he went into status the other week so going to get a plan together for rescue medicines. His epilepsy is quite unpredictable he could go weeks relatively stable then have mass problems, I'm used to it now tho to a degree. His speech has come on well tho not there just yet he's just quite "odd" hates certain noises very sensory, has a meltdown if he is disturbed when engrossed in an activity, eg pouring sand at nursery a don another child joins him he can't cope at all

We went out yesterday with a group and he was speaking loud (no idea why he often talks loud but when anxious he stops speaking or whispers) and he got up for a second and his friend sat I his seat....q meltdown. I explained and signed friends and. Friends share as although I know giving him the seat wok,d be easier it was for 5 mins and in school he will face these issues so I. Trying to gently expose them. Everyone else stood up?! Stood up properly and came near him and just stared? I was so upset I wanted to snap but lucky we were going. Thing is the others I. The group have downs or issues which are quite obvious and when they aren't coping people, are so kind and understanding. Sometimes I want to have a neon sign over his head, please go away! X

Sounds like you had a really rough time hope your feeling bit better now and Marcus. Sometimes my DD can get super fussy about things and I can see where its heading when things don't go her way but at same time she needs to deal with these things. So not fun when there is on lookers though

 

[Starry Night]

anna - I'm sorry, that sounded like a really tough day. Invisible disabilities are so misunderstood. In one way, how are others supposed to know about the disability but at the same time the quickness to judge and stare is horrible. I hope the current issues with his epilepsy settle soon. Did you have your home visit yet with the epilepsy team yet?

And I really like Bengal cats. I think they're so pretty and exotic looking.

afm - just having a hair-pulling sort of day. My son decided to get up at 4 this morning. He normally is a great sleeper which I know is awesome with a kid with ASD. But today I got to feel the pain that other parents have to deal with. Oi. And of course being so tired meant DS had more meltdowns (throwing, hitting, spitting, yelling) and I'm too tired to be as patient as I should. It also doesn't help that DD seems to be entering the tantrum phase (she is 14 months). She's picked up on the hitting and she's always been bit of a drama queen when it comes to crying and clinging.

And my son is tormenting the cats. The kittens seem to be wanting to be friendly and the male, Pepper, had been showing signs of being ideal for the kids. He was starting to follow them around and sit with my son, etc, but my son gets so over-excited he likes to spit at the cats. Spitting is such a sign of aggression to kitties so of course, they hate it. They don't scratch or bite but they run off and hide. Now Pepper runs off whenever he sees my son. I have tried modelling the sounds and behaviours that the kitties like or explaining how the spitting scares the kitties. But to no avail. My one year old does better with them (though she likes to copy her brother's spitting....monkey see....monkey do....)

I really do think my son is more of a dog-person but I had really been hoping the pets would be something he could connect with. He does like them but just isn't ready to deal with them I guess. Or he remembers how mean our last kitty had been to him.

 

[Misstrouble19]

my son is 4 years old but working as an 2 year old basically and hes got gdd got an appointment again with kids doc end of october i have claimed dla for him but got it on low rate but better than nothing, its money i can put away for him

 

[sequeena]

Hi ladies I'm so sorry I'm not around. 6 days until school lots of stress with transport. Still need to do shoe shopping which will be a really traumatic time for T.

I hope you are all ok I will try and catch up soon xxx

 

[RachA]

Hi ladies I'm so sorry I'm not around. 6 days until school lots of stress with transport. Still need to do shoe shopping which will be a really traumatic time for T.

I hope you are all ok I will try and catch up soon xxx

It seems to be so busy over the summer.

Hope you get the school transport and shoes sorted.

We did our shoe shopping last week and thankfully she still fits in her uniform from pre holidays

I'm feeling very frustrated at the moment. I have been waiting for an op on my wrist since May. I was told it'd be done between end of July and Aug. I chased them up 2 weeks ago as I hadn't heard anything and they said it'd be end of Sept definitly-I was ok with that. I decided to chase them up again as still hadn't heard anything and was told they were aiming for end of sept but maybe the first week or so of October! I then mentioned that they'd best take some dates I'm away as we are going away as a whole extended family at half term. Apparently I can't fly for 6 weeks after the op!!!! Good job I mentioned it. It now means that I can't have the op until the beginning of Nov
Not happy as it's really hurting me and normal painkillers don't help at all.

 

[Starry Night]

Ugh. Why do they do that?! I'm sorry you have to wait so long for surgery. That's a long time to deal with pain. My father-in-law had a similar experience a few years back. I don't even remember what the surgery was for anymore but hospital was undergoing renovations so they bumped it back. First it was a month and then it was another 3 or 4 months. It wasn't all that minor either.

Is there any way you could get a prescription for stronger painkillers?

afm - another year until our son starts kindergarten but I need to start to get the ball rolling on applying for an Individual Education Plan. Still not really sure what that all entails. I already shot the principal an email and he wants me to call the second week of school.

We also now have a specialist who will be coming to our house about once a month to work with my son using Floor Time therapy. This will be on top of the occupational and speech therapy he is already getting. I'm pleased she will be coming to the house as we're rural and everything is such a drive. Never mind we only have one car and when I need it that means I have to get the kids up early and drop my husband off at work and then pick him up later. I try to schedule appointments so I don't have to make more trips than necessary. Packing the kids up is such a pain!

 

[RachA]

Thanks Starry Night.
I was toying with the idea of going to the drs to see if they could give me anything stronger. The only problem being that anything stronger is morphine based and I really don't want morphine based products.
In the end my parents have stepped in and are lending us the money to gave it done privately. So I'm having the op this Friday. There will be a whole host of other issues over the next two weeks as I won't be able to dress Esther or do her hair. I won't be able to take her out on my own as if she has a strop I won't be able to pick her up etc.
but at least it's being done

It's good that they are coming out to yours for this therapy. Sometimes it's just too much having to keep going out for different things.
Hopefully at some point the different therapy will stop and it'll be much easier for you. It's so much easier now that Esther's therapy is done in school.

 

[Starry Night]

I'm glad you are able to get it all taken care of. I would be uncomfortable with taking morphine as well.

I'm really hoping my son will get support at school once he starts next year. Our province is really terrible with support. Many kids with autism are denied funding or support of any kind and are just expected to cope. And my son is relatively high-functioning so it makes it tough to prove we need that help. Another mom on a local Facebook group was even just denied disability financial aid so if we get denied too we can't even pay for private. (The therapy he is getting now will stop once he starts kindergarten).

 

[Thurinius]

We've had my son's first week of school.
His teacher is lovely and letting him out first and they have been taking special care of him over lunch time, it's the first time he's had school dinners.
they applied for funding for a one to one helper but no news yet. Which is frustrating.
however a speech and language therapist is going to observe him on Monday. So hopefully he should get some help.

 

[Reid]

Not been in here for a while how is everyone and there kids doing good I hope.
We've had some huge positives in the past few months my son's now going to nursery 4 days a week which at 1st I felt a bit ill over only because i though it feel like I'd never see him but it's working out well he still really loves going there and now that winter is creeping in its good cause he's not going to be stuck in the house. He's also completely took the feet away from me a few times now in the best way just randomly coming out with new words. He was playing on the floor with his toy bus I was chatting to my mum on the phone and next thing the wheels on the bus go round and round all day long as clear as day you could have knocked me down with a feather he's been singing it all day I'm soooo proud of him he's done this with a few wee songs now 😊
We also got an appointment through for the asd assessment (after going to the local msp the waiting list was 11 months and he waited 9 plus months for salt so I was out with the boxing gloves) he go's at the end of the month. I'm glad we got the appointment but I do still feel a little nervous about it.
Hope things are all good with you ladies xx

 

[Reid]

I've joined a few good groups on faceboook for special needs parents in the area and have got in touch with the parents of the kids my son goes nursery with on them which is nice. There trying to set up play schemes in the area which would be good to. The only thing is mil has wangled her way into the group and is now admin so no blowing off steam in there eh I can't talk freely about things x

 

[sequeena]

Ladies I am so behind, sorry

Annanouska did you get the visit from the epilepsy team? How is little man now? I think it upsets me more when kids stare because I know I can't tell them to fuck off

Starry night How are things? Is he back to sleeping ok?

Hi misstrouble How are you? If you don't think the rate of dla is right you can appeal xx

Rach How did your op go?

Thurinius it sounds like your son is doing well. Does he have a statement? I would pursue that If you can, the school can refer him. Fingers crossed he gets 1:1 soon.

Lynne he is doing so well!! You must be so proud!! How did your MIL manage that?

As for me... first full week of school done. 2.5 hours per day. I am exhausted. We need the weekend to receuperate. Thomas is sleeping every night (usual wake up for nappy change etc) but one night, wednesday I think he was constantly cryjng my fitbit said I was up 12 times!! He loves school though. Every day he comes home on the bus and he is quiet but once he has eaten I ask what he did and every day he says play red car or play truck.

He has clearly been outside a few times As one day he filled his pocket with sand his teacher rang me to say he goes to assembly every day but he has been cryjng perhaps being with the entire school is a little overwhelming? On friday he went on his first school trip to the town's annual fair. His teacher said he didn't like How busy it was which was expected but the got him on 2 rides even though he didn't like it. Bonus getting him on there though.

He will be staying for lunch this week but education won't fund a bus just for him to come home so I have to pick him up at 1pm. I am excited to see How he comes and How much he eats.

His behaviour at home is pretty horrendous but We were expecting it. Last sunday at softplay he kicked a 2 year old in the chest. It was clearly not thought out and just an automatic reaction to the child walking past him

He has been referred to a behaviour is which I'm thankful for on october 7th I start a course for parents of children with learning disabilities.

Thomas has been constipated for months and I had no clue. I went along to a potty training course just for info As he is not ready. There the had a poo chart and Thomas was doing rabbit poos which means the are constipated. I had him checked over and he has been constipated for 6 months +. I had no idea. He shows no pain or discomfort and can't tell me anything. He is now on a mixture of lactulose and movicol.

Happy Sunday!!

 

[Reid]

Lol pocket full of sand that made me laugh must he thought I like this I'll take some home for later lol. I think you're right probably the whole school being together is to much for him you could maybe ask if 1 of his teachers would stay in the class with him until he's had proper time to settle In and get used to the new surroundings of school and that's amazing he's sleeping I no what a hard time you had with his sleeping.
Oh god knows she's on loads of pages what gets me most is she's never really bothered with him xx

 

[minties]

Does anyone have any ideas on how I go about telling what behaviour is due to Thomas's ASD, or just him being a big meanie? He threw dirt in Sophies eyes and she was screaming in great pain, I had to throw her in the shower with all her clothes on to wash it out. I was holding her head back and forcing her eyes open and she was clawing at me and weeping and screaming .

He seemed to think it was ok because she was in his way and didn't have any sympathy. Sophie says Thomas hates her . I almost cried myself she was so upset and in pain! There is still dirt coming out of the corner of her eyes 4 hours later. Thomas still doesn't care. He sometimes hugs her and says sorry but not often.

 

[alibaba24]

Does anyone have any ideas on how I go about telling what behaviour is due to Thomas's ASD, or just him being a big meanie? He threw dirt in Sophies eyes and she was screaming in great pain, I had to throw her in the shower with all her clothes on to wash it out. I was holding her head back and forcing her eyes open and she was clawing at me and weeping and screaming .

He seemed to think it was ok because she was in his way and didn't have any sympathy. Sophie says Thomas hates her . I almost cried myself she was so upset and in pain! There is still dirt coming out of the corner of her eyes 4 hours later. Thomas still doesn't care. He sometimes hugs her and says sorry but not often.

I'm not an expert but that seems like 4 year old stuff. They don't really have a grasp on consequences yet and are impulsive. My two nephews are just awful to each other and show no remorse when they see the other one upset. They are 6&8 brothers

 

[minties]

Thank you, it's really hard for me to tell because Sophie gives sympathy and has never done anything like this, probably just her personality.

 

[bumpin2012]

Hi ladies. I'm not on BnB much these days.

ASD assessment will be in November. Until then, just waiting in limbo.

G has done well with daycare, and since we had tubes placed in his ears he's come a long way from a speech perspective. He's still miles behind his peers, though

How everyone doing?

 

[RachA]

Thurinius-glad your son seems to be getting in well at school.

Sequeena-how's Thomas got on this week at school and staying for lunch?

Op went ok thanks. I'm relatively pain free now as long as I don't pick anything up. I'm shocked at how quickly I've lost the use of my hand though. It's been a week since I had it done and already my grip is weakened. Hopefully in another week or so I can start doing exercises to build the strength back up.

 

[sequeena]

Minties how are things?? Thomas is the same!

Hey bumpin so good to hear from you! Good luck with the asd testing xx

He's doing well... as in He is eating and playing and sleeping every night etc. However He keeps being scratched by a boy in his class and thomas has now started pushing kids at playtime and even pulled a girls hair today. Mortified! But I was expecting this. Thomas thinks it is hilarious He doesn't understand at all