Support Chat Thread

[Sovereign]

Can I say hi too? We dont even have q diagnosis yet but I know without a doubt that Charlie is on the autistic spectrum. We are waiting for his first appointment but I have done so much research that there is no way Charlie isnt autistic.

And it breaks my heart.

Xx

 

[Tiff]

It definitely is heartbreaking for sure. I found the whole process to diagnosis horrid and drawn out.

Hate that anyone needs to use this thread, but happy you're here! (If that makes sense)

 

[sun]

Welcome Sovereign! Hope everyone is having a good weekend! xx

 

[mummy2o]

Yes, although I have come to realise my son will never be normal. He's 5 and a half and you think me knowing he has autism for a couple of years would get easier. I think its the fact he went to a mainstream school and I can see how far behind he is compared to everyone else. Its just a waiting game to see if his language improves if not I have to think about putting him in a special autistic school attached to a mainstream school next year. Its not that bad, just a bit annoying changing school really. But at the end of the day its whats best for him and although I love his current school I see it from their point of view to.

 

[Sovereign]

Thanks for the welcome guys!! We've had a relatively good weekend, a few meltdowns but nothing major. I just wish he would eat something proper!!! Its bonfire night tomorrow (for those not in the UK) and he hasn't been as upset over the fireworks going off early as I thought which is good. How was everyone elses weekend\/

 

[Sovereign]

Yes, although I have come to realise my son will never be normal. He's 5 and a half and you think me knowing he has autism for a couple of years would get easier. I think its the fact he went to a mainstream school and I can see how far behind he is compared to everyone else. Its just a waiting game to see if his language improves if not I have to think about putting him in a special autistic school attached to a mainstream school next year. Its not that bad, just a bit annoying changing school really. But at the end of the day its whats best for him and although I love his current school I see it from their point of view to.

Aww, yes I can see why that must be hard. Hopefully he'll get better with his talking and won't have to move. Fingers crossed x

 

[Eccleston2011]

Hey guys, I kinda just need to vent...
For those of you that dont know my 6 month old daughter had two strokes in utero and doesn't move her left arm. I have been busting my butt this last month trying to get her into a new therapy called the anat baniel method or the Feldenkrias method... Well today my sister in law had her daughter and I couldn't help but feeling mad and a little jealous, that she gets a perfectly normal baby that she can enjoy, while I have to sit here and worry about my daughters future. Will she be able to talk, walk, and have a normal life? I feel like I am the only one concerned about her. Everyone else says she will just grow out of it... but you don't just grow out of brain damage. Its sooo frustrating and I just feel all alone in my efforts to help my daughter.

Sorry, rant over.

 

[BlueHadeda]

Oh, Eccleston! How awful that your poor daughter had to go through that. Do they know what caused/triggered the strokes?

I wonder why people seem to think you'd welcome their opinion that "they'll grow out of it"? Maybe that's what they hope? Maybe it makes them feel better if they refuse to acknowledge that it's permanent? But us, as parents, we don't have that luxury. We need to deal with that fact, so that we can go forward and find help for our children.

I totally understand your envy of your SIL. I too have had that. But you know what I've learned with having 2 special need kids and loads of other health problems between the 6 of us in our family? It's that almost NO person on this earth is born without some defects. We all have something that doesn't work perfectly. Some of it you can see with the naked eye. Some you don't. Some you find out at birth, some only during childhood or when they're an adult. I do hope your SIL's baby is as perfect as she seems, but maybe she's not.

And enjoy YOUR baby even though she might not be perfect, she's yours and she's beautiful and with a mother that fights so hard for her like you do, she'll do just fine. These special babies, they're made from stronger material than we realise.

 

[Midnight_Fairy]

Not had time to read through yet but I will grab a cuppa later and have a read.

My son is 8 and was diagnosed at 5 (although the process started much sooner- about 2yrs 9mths) My son is in a mainstream Junior school. We have trailed and errored various programmes etc and I am willing to help anyone that needs advice. I work for the council as a parent rep for my area and I am gaining quite a good insight into school and preschools and help available. If you are struggling please feel free to ask xxx

 

[faun]

I need to get this off my chest so here goes, i hate that no nurserys will take my son, yes he is autistic, yes he can be violent, yes he is non verbale , yes he still wears nappies but he is my prince and it breaks my heart that people look at him and see a problem child he is 3 for gods sake! I am already tired from fighting for 18months to get him seen and start the official diagnosis just one more box to be ticked in march then we find out where he is on the spectrum, i don't want to have to battle everyone just to get him a place at nursery that the government has said should be available to all children from the term after their third birthday. he had a place lined up to start in january but after meeting him at some sessions they have decided they are no longer able to offer him a place. Every where is over subscribed and Billy keeps getting rejected as soon as they see how he is even the school his sister goes to has said they can't take him as can't cope with additional needs. I just want to cry and scream at them how can they not see it is discrimination. My specialist health visitor can't even get him a place. On the plus side his play therapy to prepare him for speech therapy is going well and he loves Sue his therapist he even runs over to see her which is a huge deal for him as he won't even look at most people

I am so glad this thread has been started as even though we all have our own worries and battles for our children it is one place we can be totally honest with how it makes us feel and support each other. I will have a read of the rest of the thread in a bit and reply to others but must go as Billy is climbing the curtains again *sigh*

 

[Midnight_Fairy]

Hmm, they shouldn't be able to just reject him. As far as I know the law states they have to accept all children regardless of needs.

What are the reasons for refusing him?

Please contact portage as they can liase with preschools and arrange 1:1 cover is needs be xx
https://www.portage.org.uk/

 

[faun]

We have been refered to portage and just waiting for an appointment or someone to come see us. The nurserys won't take him because of his behaviour it is extremely challenging and they said they won't be able to keep him or others safe if they take him all 4 nurserys have said the same thing. They have all suggested the specialist nursery but as you can imagine it is full with a huge waiting list my health visitor is trying to pull some strings to get him in but she isn't hopefull. It just makes me sad really as i'm sure if the normal nursery took him they would get funding for extra staff etc it just seems like with so few places and loads of children they can cherry pic who they want to take. Will give portage another ring and see if i can speed things up. Thanks Midnight x

 

[Midnight_Fairy]

definitely call them again. I was at a lose end until they intervened. Let me know what they say xx

 

[mummy3]

Off to catch up

been a long weekend, littlest ended up at childrens hospital saturday night with what turned out to be a huge abscess on her left inner thigh. She doesnt feel pain like a typical child so gave us no indication, she's had a fever for a few days but we put it down to teething We got 10days of antibiotics and to follow up with pediatrician within 3 days, got appointment tomorrow at 2. I've never seen anything like it before, not sure if they're going to drain it or if antibiotics could clear it, its near 3in!

Mummy2o Its hard seeing the comparisons My little guy (5 in jan) will be going to the ASD classroom for kindergarten, which is bittersweet but I cant imagine swapping from a mainstream classroom I hope if he has to change that it isnt too hard on him.

Eccleston Thats a totally understandable reaction Blue says it perfectly

Sovereign, how's his appetite today?

Hope bonfire night went ok for UK ladies?!

Midnight, how is mainstream school going?

Faun, thats awful the nurseries are being like that! I hope portage helps Thats very positive he's responding so well to his therapist

 

[Tiff]

Eccleston - I don't understand the "they'll grow out of it" either. Grow out of what, exactly? Because that's a thing we see regularly when people have strokes - they "grow out" of the damage done. Honestly, a little bit of "hey, I understand you are scared and we're scared too"???

Faun - I'm no help when it comes to schools/nursery's across the pond. Hope Portage helps you though.

Mummy3 - Agh, that's the worst! Claire doesn't feel pain like us either so we know when she actually says something its bad. Hope the antibiotics help her abcess.



Claire's been sick which isn't fun, on top of our time change. She's starting to feel a bit better but I'm keeping her out of pre-school this afternoon. She starts a music therapy class tomorrow morning which I am SUPER excited about. Music is definitely Claire's "thing", so this should help. Its a readiness for school program so through music they'll help teach her the routines of classrooms etc.

Then on Thursday she has her reassessment with her SLP and OT. I'm *hoping* that this is when they'll let me know when Claire will be picked up for regular therapy. I was told she'd be picked up before the end of October and here we are into November. Not much mind you, but after waiting for 2 years I'm starting to get irritated.

 

[BlueHadeda]

Tiff, that music class sounds great!! Hope she has loads of fun tomorrow.

Mummy3, your poor baby! Hope the antibiotics works quickly. My daughter is the opposite, she overreacts to the slightest bit of pain. Accordingly to the phsychologist it's because she had to go through so much in her life. I confess that I got irritated at times blush, but after reading about your daughter, I'll try and see the good in it.

Those of you who struggles with your children's lack of a varied or plentiful diet. What do you do? Do you give the child what he prefers to eat, even if it's not as healthy as it should be? Or do you keep on providing only what you prepared for the family meal and if he/she doesn't eat, let them go without? My 11-year old has this problem. He just refuses to eat if it's not something he likes. And what he likes, is extremely limitted and usually either bland, or sweet. He's very underweight, but healthy. He doesn't have autism. He has epilepsy, but I doubt if that has anything to do with it. He was diagnosed with sensory integration disorder as a baby, especially around the mouth, so maybe this is still a problem for him.

 

[Sovereign]

Bluehadeda, I confess just days I end up giving him what he will eat which is crisps and chocolate atm. Makes me sound such a bad mother but I just want him to.eat something!

 

[sun]

Bluehadeda - My son is much younger but has sensory issues and is very difficult when it comes to food. We are under the care of a dietician because he is low in most vitamins (especially D) and iron. He will only eat crunchy things with flavour - so his diet is very limited. He also has issues with food touching each other and texture. I am trying food chaining with him at the moment and it is going ok. Basically I will take a food he likes (ie: mac and cheese) and have a goal food (like pasta with meat sauce) and slowly work from one to the other. I also offer him things he is ok with and present them in small portions in individual containers. If he was a typical toddler I would probably let him go without, but he has no problem eating nothing if the alternative is something he doesn't want. He has eaten nothing for a day on many occasions.

Tiff - I hope Claire is feeling better. Bun is really into music as well - we are sending him to an elementary school that has a strong focus on it.

Mummy3 - I hope Eilidh is much better - how scary for you! xx

On a good note - I got him to eat some quinoa at dinner last night!!! He likes edamame and chick peas (sometimes) as long as I really spice them up. So I spiced up some edamame and chick peas and mixed the latter with a little quinoa. He ate a few spoons of the chick peas (no edamame), 2 carrots and the pecans. I know it's not alot, but it's a huge improvement. And a surprise - I didn't expect him to eat a thing but the pecans and maybe a carrot. This is seriously the best meal he has eaten in weeks. Yay! This is how I serve his food - in very small amounts separate. It looks like more food than it is - there is about a heaping tablespoon each of the beans.

 

[BlueHadeda]

Sovereign, I don't feel like a bad mom, and that's precisely what I did on many occasions with my son. So I don't think you're a bad mom either for doing what needs to be done to get something in their tummies! Not everyone would understand how difficult this can be. Sun, like you say, my son would also go for literally days without eating anything, if the alternative is things he doesn't want/like. I feel more awful for the days I've sent him to bed on an empty tummy, than the hundreds of times I gave him biscuits for dinner, or a chocolate. (Usually after a heartbreaking session of pleading and trying to get him to at least take ONE bite of dinner. )

He started to skip lunch most days this year until I started to agree about a month ago, that he can have sweetened dried cereal for lunch. I do feel awful about it, but he just can't play tennis (his afterschool activity), write exams, do homework, etc. on an empty stomach day after day after day!! At least dinner time is already a million times better now than it was when he was age 3-6. It's not the fight it used to be. He still eat less than his 4-year old brother, and doesn't eat everything (especially veggies!).

Sun, I like that food chaining idea, I'll try that! Thank you. Good luck with your son, sounds like he did really well last night! The pecans is great, I wish my son would eat nuts. Even salted would be fabulous. But the only way he'll eat them is if they're covered in chocolate.

 

[sun]

I hope it works out. I am glad my kiddo likes nuts - he will eat them 60% of the time as long as they are salty and toasted until they are crunchy. But even if he does eat, it usually isn't more than a few bites.

I am the same though with letting him eat whatever as long as he eats - that meal above looks really healthy and great but it isn't typical of what my son eats. I usually offer something like that but often he won't touch it at all. He will always eat rice cakes (which have nothing in them) so sometimes all he wants is rice cakes and crisps for days. If I say no (which I have done) he just doesn't eat anything.
It doesn't seem to bother him at all
I feel so bad when I pick him up from preschool and they tell me he didn't eat and that he must be full from breakfast. He has never eaten breakfast in his life - he usually doesn't put a bite in his mouth until mid-afternoon.