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

[sequeena]

I'm so upset I'm putting on a brave face but I'm hurting so much.

I saw T's paediatrician today who had the results of his assessment. He's delayed by 2 years in almost every area of development. Now I knew he wouldn't have made a big leap forward in development despite his progress but this really hurt me a lot.

Some positives have come from it - he's having a blood test to check his blood coagulation because of how he bruises and we FINALLY have a referral to a geneticist. So things are moving forward in some respects.

I just feel so down about it all I'm fed up of constant questions from strangers I don't want to go to groups or nursery seeing other kids just makes me more upset.

I hate this.

 

[emyandpotato]

I'm so upset I'm putting on a brave face but I'm hurting so much.

I saw T's paediatrician today who had the results of his assessment. He's delayed by 2 years in almost every area of development. Now I knew he wouldn't have made a big leap forward in development despite his progress but this really hurt me a lot.

Some positives have come from it - he's having a blood test to check his blood coagulation because of how he bruises and we FINALLY have a referral to a geneticist. So things are moving forward in some respects.

I just feel so down about it all I'm fed up of constant questions from strangers I don't want to go to groups or nursery seeing other kids just makes me more upset.

I hate this.

Huge hugs sweetie. Sorry you're going through this.

 

[nicki01]

Sorry your feeling crappy sequeena.

How long will the blood test and referal take?

 

[sequeena]

Well we're taking him for the blood test this week - I don't know how long it will take though.

The paed said she'd see us in a few months after we've seen the geneticist so I imagine we won't see the geneticist until after Christmas.

 

[sequeena]

Thank you both, it's one of those 'fuck this shit' days.

 

[emyandpotato]

Yep. Just had one of those weekends so get how you feel. My 18 month old niece has more words and is way more mobile than Rory. Didn't realise as hadn't seen her in nearly a year but just saw her this weekend and got a total shock. She can walk further than him too.

I know there is nothing that can be said to make you feel better right now, and it truly is a shit situation for you and for Thomas, but I honestly think that our children struggling in their various ways at the moment due to the problems they're having with development and health and everything else will make them more loving, compassionate and understanding people later on, whether they catch up or not. They're getting probably more individual care and attention than other children who naturally don't need it as much, and they're also learning to deal with their own frustrations and learning that not everyone is equal. And although the situation is far from ideal I think everyone's LOs will grow up in to amazing young people because of it.

 

[Feathers]

Big hugs to you Sequeena. Assessments can be horrible because it doesn't change who our LOs are but to hear it put as they do hurts for them doesn't it. I'm sure Thomas will slowly get there at his own speed and in his own time. I know it won't make you feel better though. Did they say if there was any other support he could have?

I had my six monthly appointment with Olivia's consultant yesterday. She seemed to think we had seen the Geneticist again (we hadn't) and started talking about Noonans Syndrome as though we knew what she was on about (we didn't) and then told us not to worry and that she'd chase our genetics consultant for the appointment. She didn't want to talk much about what Noonans is despite us asking. Cue google when we get home. It was written in her notes I saw so I guess they are pretty sure it's a possibility to be there. Which means we maybe have a diagnosis coming soon. Trouble is Noonans comes with an 80-90% chance of heart issues as well as explaining her feeding issues and many other things including development delay so obviously now very worried.
Going to chase that appointment myself today. I felt awfully worried last night and upset over there probably being a genetic problem that won't just go away (which is my pipe dream hope as stupid as it is.)
Also being referred to an Autism specialist for assessment due to Olivia's behaviours (apparently Noonans increases chances of having autism too).
Feeling more than a little shell shocked but trying to just get on with it today because...well we just have to don't we.
Portage finishes at Xmas for us as it doesn't continue here past three year old funding. Nursery will apply for Portex which takes place there instead and are working with us on slowly gathering evidence for statementing as well as finally applying for some 1:1 hours for her. We have a new SENCO there and she's much improved on the last one. Her IEP is far better. So some ups and downs as always lol.

 

[annanouska]

Feathers there is another lady on here I know from a diff thread whose son is having ongoing assessment for noonans, he is younger tho about 18 mo I think. They are already aware he has a "small" heart issue but he is doing well. I will direct her tho this thread as she too was finding not many know about noonans.

Sequeena I think with any child who has an additional need its unfair to compare to the averag child. If you have seen changes,improvements, new skills then that's fantastic. It always bewildered who the doctors compare to as for example he is between 12-18 mo developmentally. A "average" child of that age can vary so dramatically in their skills too even at 27 months with 5 single words and 3 completely random longs entrances some people tell me that's "normal" for his age

Did you get anywhere about the sleep? Tag would make such a huge difference as to how you cope. Good luck with the blood tests too, hopefully you will,start to get some answers. Have they checked his iron etc? I never knew how much an iron deficiency apparently affects development.

You still need to go to playgroups etc for Thomas, I know its hard and the questions get boring but I try to remind myself I do it for him to show him he is the same as others and can join in just as much (within reason!).

X hope today is a better day for everyone x

 

[RachA]

Thank you rach, that really kind. We will definatly sort out meeting up soon, I'm just muddling through the weeks as we seem to have hit a stage of appointments again! Dentists, dietician etc and now I've started viewing schools too!

Thanks moggy I will have a go with them. I didn't know there was a 6+ out there!
Wish I would have come on here last night before I ordered my shopping!!

Which school did you go for in the end rach? I can't remember if you said?
I've viewed winchelsea special school so far but have another 7 to see over the next few weeks both special and mainstream!

We went for the same school that our eldest goes to in the end. At the moment I think it's the right choice. I think it's doing them both good to be at the same school. If she doesn't progress as well as she should we will re-visit the situation. I felt quite strongly that E should be in mainstream school as she needs children who are talking etc around her.

Which mainstream schools are you looking at? If you'd rather you can PM me with them.

 

[RachA]

Sorry about the assessment Sequeena. I hate how these things make us feel.

Has T fallen behind or was he at 2 years behind at the last assessment?
We kept hoping that E would improve a bit at each assessment but she hasn't-she keeps being about 18 months behind.

I find it so far seeing other children. We met up with OH's wider family in Saturday and there were 14 children there ranging in age from 12 months to about 10/12 years. Apart from the 12 month old they are all further ahead than E. Obviously the older ones would be! 4 of the other children are younger than E and they talk better than her etc.
But I have to say that E is very precious. She's happy and smiley etc. idk-it seems to me that children that have 'issues' are something special and have a contentment that other children don't.

 

[sequeena]

Thank you everyone. It's definitely been a hard pill to swallow I've been in a bit of a daze most of the day. I'm just so upset about it all and even though things are moving in the right direction i know it will be a long time before we get a real diagnosis, if there is actually one. A friend sent Thomas a wonderful sensory toy via prime (amazon) to cheer us up I'm so grateful.

Rach Thomas started off as 12 months behind. Then it went to 15-18 months and now it's 2 years. I'm so afraid the gap will just keep widening.

Thomas is definitely a content child (when he's not on one). People are forever commenting on his smiley and gentle nature.

 

[Quackquack99]

Hi girls, i apologise if I'm in the wrong section but has had a speech delay for over a year now. Ive had different speech therapist and gps tell me that there isn't any issue. Now summer has started nursery three weeks ago and yesterday the manager requested a talk as she and others have some niggling concerns about summer and that they wanted me to fill in an IDSS form to allow someone to come and assess summer which i completely welcome. She did say that speech wasn't their only cause for concern. I don't even know what to expect now and feel like an assessment should have been done sooner than now.

 

[sequeena]

Hi quack welcome my son's problems were picked up at 17 months so before nursery but I imagine your LO will be assessed in nursery then referred to a paediatrician if needs be. I'm sure someone else has better advice x

 

[Quackquack99]

Thank you sequeena, I went and googled IDSS in my local area and its all about offering support to children with additional needs. I feel so down, I thought by three summer would have caught up. The nursery have said they will do all they can to help which is a positive and im pleased.

 

[sequeena]

Thank you sequeena, I went and googled IDSS in my local area and its all about offering support to children with additional needs. I feel so down, I thought by three summer would have caught up. The nursery have said they will do all they can to help which is a positive and im pleased.

Have nursery said what their concerns are other than speech? Often just a speech delay can be tackled very well with therapy

 

[Quackquack99]

They were concerned about her communication, listening and understanding. They have told me she is very difficult to settle when upset and how she has fluff to comfort her. She has had a speech therapist for 14 months and her progress has been slow but i know nursery feel like they have a year to try their best before she starts school. I could always tell a difference between summer and her peers.

 

[bumpin2012]

sequeena. Your little man is just gorgeous though! Hope he's enjoying that new toy.

 

[nicki01]

Rach- I've looked at winchelsea, and have left to view linwood and springwood campus special needs. My mainstream ones are kingsleigh, bearwood and malmesbury park (they have an autistic unit in the mainstream school)
I start viewing all the others next week!
Nursery have high hopes that she can attend a mainstream and I'm thinking that the direction I will head but am viewing special needs too so I can compare them.

We have been having a real tough time with her since Thursday, she keeps getting so angry and attacking me, she rips my hair out, bites, punches, pinches, kicks me, headbutts, my head is covered in lumps and when I brush my hair the hair brush just fills! Its horrible. She goes for about 20-30 minutes constant and then just breaks down in floods of tears and sobs, if I leave the room to get myself away from her she tries to break and smash things, I've no idea how my tv is still in one piece!
Its was just me she goes for but on Monday she done it to her SENCO at nursery. I warned them but she was still stunned about savage she got.
I've tried everything to stop her and snap her out of it but she continues untill she breaks down.
I hate how its making me feel, I've walked away a few times thinking how much I dislike her, but I know I don't, I just dislike the behaviour but its hard.
I'm on egg shells worried that something will kick her off its just awfull.
When she is good she is amazing, the most polite loving girl you could meet, obviously has her stuggles and plays up but still she is just fantastic, but when she starts she is awfull, like she isn't there, just a blank angry child that I really can't control!
It must be so horrible for her to get like that but I don't know how to stop it or help her!!

 

[lindblum]

it's been a long time that i posted on here, hope you don't mind me popping in again.

sequeena, i hope you are feeling better. my child had an assessment at age 5 and was 18 months behind, within the 8th percentile It's really a really horrible feeling isn't it, especially when you know how much progress they've made in their own right. It feels like they aren't getting anywhere.
I know our children don't have the same needs, but i've noticed as mine got older, she started picking up things a lot quicker. I'm really proud of where she is now, she's nearly 7. Although not the same as her peers, she has done amazingly. Last year in year 1, she went up 3 reading book stages. She's a really happy child and she always tries her best. That means a lot to me. The best thing we can do is continued encouragement.
sorry if i've rambled on but reading your post just brought back the memories of that day. I've kept the report. I plan to show it to her when she brings home her top gcse grades to show her how well she's done

nicki01, i used to feel the same way about my oldest. i only ever told my sister out loud about how i much i didn't like her. she's not autistic but she was extremely aggressive and tantrumed a lot. i remember once she pushed my 2nd child, then a year and a half, down the stairs. She couldn't even talk to tell why she did it. I was so furious i wanted to shake and scream at her. I sent her to her room instead. She's better behaved now ever since she started talking. I don't know how it works with autistic children, i hope you are able to find a way to help her deal with expressing herself. I don't know whether it's any use to you, but i used to ask my daughter to point or show me what it was that she wanted to prevent her getting frustrated. x

 

[RachA]

Rach- I've looked at winchelsea, and have left to view linwood and springwood campus special needs. My mainstream ones are kingsleigh, bearwood and malmesbury park (they have an autistic unit in the mainstream school)
I start viewing all the others next week!
Nursery have high hopes that she can attend a mainstream and I'm thinking that the direction I will head but am viewing special needs too so I can compare them.

We have been having a real tough time with her since Thursday, she keeps getting so angry and attacking me, she rips my hair out, bites, punches, pinches, kicks me, headbutts, my head is covered in lumps and when I brush my hair the hair brush just fills! Its horrible. She goes for about 20-30 minutes constant and then just breaks down in floods of tears and sobs, if I leave the room to get myself away from her she tries to break and smash things, I've no idea how my tv is still in one piece!
Its was just me she goes for but on Monday she done it to her SENCO at nursery. I warned them but she was still stunned about savage she got.
I've tried everything to stop her and snap her out of it but she continues untill she breaks down.
I hate how its making me feel, I've walked away a few times thinking how much I dislike her, but I know I don't, I just dislike the behaviour but its hard.
I'm on egg shells worried that something will kick her off its just awfull.
When she is good she is amazing, the most polite loving girl you could meet, obviously has her stuggles and plays up but still she is just fantastic, but when she starts she is awfull, like she isn't there, just a blank angry child that I really can't control!
It must be so horrible for her to get like that but I don't know how to stop it or help her!!

Malmesbury Park Rigs unit is supposed to be really good-one of Edthers friends from pre-school started this Sept. I think you need a statement to get in there though.
If you are looking at Bearwood/Kingsley area then look at Christ the King. It's a Roman Catholic school but I don't know how strict they are about entry and it's not in your face RC. It's a really good school though-my nephews went there and did really well. Not sure what your catchment area is (although if you get a statement that doesn't matter as you can request anywhere) but you could also look at Hill View as that's a really good school.


It's really hard when they behave like that. My eldest isn't autistic but he would have major tantrums that involved getting very nasty and quite violent-in the end we found that leaving him to get it out of his system worked best. Quite often we'd put him in his room as there wasn't as much to break in there. Esther also throws and pulls things when she gets frustrated. I can usually distract her but not always - if I can't I try and leave her if it's safe to do so.
I remember feeling like you do-I hated my sons behaviour and I didn't like being with him. Now though he has calmed down a lot. I think it's hard got them when they can't express their feelings properly. Also though they find it hard to understand what they are feeling and I think that makes them lash out.