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

[sequeena]

Hi mummy2lissy. I didn't want to read and run but I don't have much time right Now. A lot of what you describe is similar to my son Thomas. I'm sorry to say aside from diagnosis for things like hypermobility, sensory processing disorder and (well almost diagnosed) epilepsy we still have no idea why Thomas is like He is. It is a long waiting process. Thomas was referred at 17 months (but watched from birth because of congenital deformities). He will be 4 in a few weeks. Hopefully we will see a genetecist at The end of this year.

It's hard and frustrating not knowing what is wrong but if you focus on The individual problems rather than The diagnosis I find it easier to deal with xx

I'm just off out to physio. Anyone remember me injuring my shoulder at The beginning of april? It still hurts so I think it may be more than just a sprain.

 

[Reid]

I phoned the developmental centre my son attends every 6 months to see where they were with the autism assessment waiting list (he was referred in feb) I was expecting a few months behind what they told me in Feb which was 6 months but no 11 months so we're looking at January February next year😢 bit deflated and I can't help but worry he could be missing out on extra support and help xx

 

[Thurinius]

I phoned the developmental centre my son attends every 6 months to see where they were with the autism assessment waiting list (he was referred in feb) I was expecting a few months behind what they told me in Feb which was 6 months but no 11 months so we're looking at January February next year😢 bit deflated and I can't help but worry he could be missing out on extra support and help xx

Hi Lynn,
Is this your first appt? We had an eight month wait between the initial assessment and the final diagnosis.
But we didn't miss out on anything I don't think. My son was under the care of the early learning team who went into his nursery to advise the staff there.
Since diagnosis we have been moved onto the communications disorder team because he's older and they are liaising with his school.
We were told that we would get help before diagnosis, our authority doesn't wait for it.
Quite possibly yours is the same too. So don't fret.
Though I know the waiting is hard xxx

 

[Reid]

Yes it the 1st appointment we are waiting on. Thankfully my son's in a very good nursery that's for children with speech disorders asd and so on. Next month he will be going to 4 days from his current 2 days xx

 

[RachA]

Hi all, not sure if this is the best place to post as I'm new to this forum! I'm just after abit of advice, usual stuff....can things change? How do I get dad to understand? Is there a diagnosis at the end?...here's abit on our background.

William is coming up to 19 months. He is a twin, hes twin 1!
Archie (twin2) his brother has sailed through most development milestones, he's now walking, talking, singing along to songs, playing etc and the general interaction.
From around 4 months I knew something wasn't 'quite right' with William. He couldn't sit, wave, clap etc. I expressed concerns to my hv at around 7 months when he wasn't sitting and she made a referral to development.
When we had our first appointment a week after his 1st birthday he still wasn't quite sitting unaided. He could do a comando crawl and wasn't pulling himself to stand. The paediatrian said it looked like he had a mild development delay and would see him again 6 months later.
Within this time William has began to crawl properly and pull to stand. He has stopped babbling but he can now clap and wave but doesn't point or communicqte. (3 days ago he took 2 steps!!) He has also had staring episodes where he just daydreams in the middle of playing then some time after snaps out of it. He plays by throwing toys or mixing them round in a box, he seeks sensory activities, plays alone and has no interest in his brother.
Anyway last month we saw his Dr again for his next appointment and he did a series of tests etc and the outcome was that he has poor muscle tone in all limbs and that they very concerned about what they'd seen. There was no mention of conditions etc just their concern.

A referral was made to SALT for a feeding assessment as he picks bits out of food and never clears his mouth. His weight is on the 9th centile. He has been referred for a longer assessment at our development centre.

SALT came last week and following his feedING assessment and the developmentshe saw, she has put him back to 9 months and added thickener to his drink while we wait for a videofluoscopy for his drinking issues (wet sounding and bubbles after drinks)
She saw his movements and went on to make a referral to OT.
Whilst she was here he had one of his 'absences' and became really hyper afterwards.

I received paperwork through for his assessment and it will start in November and last 6 weeks, in the meantime SALT will still be visiting along with a specialist hv and then OT.
Things seem to be moving along and lots of people getting involed, it's so overwhelming.

But...we don't seem to be finding any answers and I don't like the unknown! Everyone is expressing their concern or saying 'special needs', 'additional needs' but we keep hitting walls!

Has anyone been through or seen something similar and does have a diagnosis?

I know these things tend to be a waiting game but I don't wait very well! Lol

Sorry for the long post and thankyou if you made it to the end!!

Gemma x

Hi

It's really great that William is getting lots of help. Keep pushing it

My situation is similar but like most of these things, not the same.
I guess you are feeling in limbo at the moment as he has no diagnosis. We are still in that position nearly 4 years later. Esther has developmental delay but they don't know why. She's been tested for various things but there is no apparent reason. Unfortunately this can happen but I will say that it becomes much less of a deal over time. Going back 2 years we wanted a name of something so that we could put it in paperwork etc. now though we don't feel it's such a big deal. She has delays and she has 1:1 help at school. Because she doesn't actually have a diagnosis she hasn't been pidgon-holed into a little box which people who don't understand quite often do. For us the lack of a diagnosis has been positive.

 

[RachA]

Update from me:

Sometimes I feel a bit of a fraud coming on here which I guess is why I don't come on much.

Esther finished her first year at school today. I can't believe it's nearly over already. She has totally exceeded our expectations. Although they weren't exactly high!!! She can just about write her name. She recognises most of the letters of the alphabet and she can read about 10 words. Her sentance structure is so much better than it was-I think she actually knows most of the prepositions. She can count and recognise numbers up to around 20.
To us all that is amazing.
She is still in nappies at night. She has no concept of adding numbers together. She still refers to herself as Esther rather than I or me. She will still walk into the road if she wants to.

She's been referred to the OT as her motor skills aren't improving as much as they should. I don't know how long that's going to take to come through though.

 

[alibaba24]

Hi each great to here Esther has exceeded your expectations ! My DD took quite a while to stop referring to herself in the 3rd person too I am sure it will come. My girl starts school next month in nervous but excited too as she has made some lovely progress with her attention and listening. Still not on level with her peers but progress is progress right? We had ot out for her poor pencil grip and she discharged us on the same visit and gave us exercises to do.buttons are still a big struggle she doesn't get much practice with them is the only thing. Were still kinda going along without any official diagnosis too. I'm trying to just realise she is what she is she has strengths and weakness like us all. I'm on a great fb group called specific language impairment and it's great to relate to other parents

 

[Thurinius]

Update from me:

Sometimes I feel a bit of a fraud coming on here which I guess is why I don't come on much.

Esther finished her first year at school today. I can't believe it's nearly over already. She has totally exceeded our expectations. Although they weren't exactly high!!! She can just about write her name. She recognises most of the letters of the alphabet and she can read about 10 words. Her sentance structure is so much better than it was-I think she actually knows most of the prepositions. She can count and recognise numbers up to around 20.
To us all that is amazing.
She is still in nappies at night. She has no concept of adding numbers together. She still refers to herself as Esther rather than I or me. She will still walk into the road if she wants to.

She's been referred to the OT as her motor skills aren't improving as much as they should. I don't know how long that's going to take to come through though.

Great to hear how well Esther is doing.
Don't hide away. I love updates

 

[sequeena]

Oh lynne what a wait we are having the same with genetics x

Rach I always love hearing about esther you should pop in more often xxx

I actually have issues with me instead of T for once. Possible PCOS, underactive thyroid and/or diabetes. I had a blood test today. They couldn't find a vein in either arm for ages and when They did They butchered me I also have a womb scan coming up to look at my ovaries.

 

[Reid]

Oh lynne what a wait we are having the same with genetics x

Rach I always love hearing about esther you should pop in more often xxx

I actually have issues with me instead of T for once. Possible PCOS, underactive thyroid and/or diabetes. I had a blood test today. They couldn't find a vein in either arm for ages and when They did They butchered me I also have a womb scan coming up to look at my ovaries.

Ano it's frustrating the waiting not that I'm looking forward to the assessment I've heard it's not a fun day...oh you really haven't had the best of days hope you are better soon xx

 

[kealz]

Hi all! May I join..?

A bit about us:
My son, James, is developmentally behind where he should be. He turns 3 in Sept and his language is limited to single words, mostly nouns. He has hypermobility in his hips and has always hit physical milestones later. He lacks the communication and social skills of other children his age. He is currently under a paediatrician, SALT, physio and early years specialists and is on a waiting list for assessments for asd etc.

James is such a lovely little boy, affectionate, polite and wants to please. Of course a dx won't change that but if there is something deeper than "boys are just lazy" (as I'm often told!), then he will get the help he needs.

So good to come on here and share with others in similar situations. x

 

[Thurinius]

Hi all! May I join..?

A bit about us:
My son, James, is developmentally behind where he should be. He turns 3 in Sept and his language is limited to single words, mostly nouns. He has hypermobility in his hips and has always hit physical milestones later. He lacks the communication and social skills of other children his age. He is currently under a paediatrician, SALT, physio and early years specialists and is on a waiting list for assessments for asd etc.

James is such a lovely little boy, affectionate, polite and wants to please. Of course a dx won't change that but if there is something deeper than "boys are just lazy" (as I'm often told!), then he will get the help he needs.

So good to come on here and share with others in similar situations. x

Welcome!

 

[Reid]

Hi all! May I join..?

A bit about us:
My son, James, is developmentally behind where he should be. He turns 3 in Sept and his language is limited to single words, mostly nouns. He has hypermobility in his hips and has always hit physical milestones later. He lacks the communication and social skills of other children his age. He is currently under a paediatrician, SALT, physio and early years specialists and is on a waiting list for assessments for asd etc.

James is such a lovely little boy, affectionate, polite and wants to please. Of course a dx won't change that but if there is something deeper than "boys are just lazy" (as I'm often told!), then he will get the help he needs.

So good to come on here and share with others in similar situations. x

Hi and welcome
Xx

 

[annanouska]

I've not been about much.

Marcus is a complete nightmare recently...I think "for once" it is purely an age/ developmental thing and we are just hitting the terrible two kind of behaviour all be it late. We purchased some cakes at a bakery today , he asks for cake, told first tea the cake with pictures too well that was it....he moaned and cried all through the tea ate nothing, no cake as a result , continued crying and screaming until his bath!

Oh and just randomly high pitched screaming and laughing for the fun of it

His speech is significantly better but still bizarre in the pattern etc. he will randomly wave to people as say hello but like a learnt behaviour? If somebody actually gets close and tries to interact he doesn't like it. He's getting more regimented about things and his sensory issues are as ever crazy. We are awaiting physio as his walking had deteriorated a fair bit but his new insoles and boots seem to have helped a lot.

Sequeena I have severe pcos how I even have my little terror is a complete miracle! It's crap but I've know about it since 10yrs old so kind of used to it now x

 

[Thurinius]

We had a success today. I took my son to the theatre for the first time. Had no idea how it would go. So booked the early performance, got an aisle seat in case we had to nip out.
Aside from a meltdown in the toilets that was hand dryer related (I had to physically drag him in yelling -he was doing the yelling) it went great.
He loved it.
And he loved the fact that a cast member came down to ask random kids what their names were and what were their favourite underpants (not a weird thing, the show was Aliens Love Underpants) He got picked. Admittedly I had to say his name for him but he chose red pants
And you should have seen his face when the coast member went back on stage and said he'd spoken to him and he liked red pants. Then all the cast gave him a wave and he waved back like mad. Was so wonderful to see.
He joined in some of the audience participation shouting out answers.
Kicked his legs with joy throughout.

However in mcdonalds afterwards could I get a single word out of him about it? Nope. Wouldn't event tell me if he liked it.

 

[Starry Night]

Welcome, kealz!

RachA - you're not a fraud. You're always welcome here. Happy updates are always wonderful to hear. I'm glad Esther is doing so well.

sequeena - sounds like you're going through a rough time. I have PCOS as well though it's more of the functional variety. I mainly affected my ability to STAY pregnant.

anna - Sorry that things have been rough with Marcus. My DS seems to be hitting "terrible twos" late too. I really can't pin all of his recent tough behaviour on autism. It definitely seems toddlerish even though those years should be behind us now. It's all "I want this" you give it to him and then he will SCREAM "no! I don't like it!" So annoying.

Thurinius - how lovely for your DS! And I can't get my guy to talk about things that have gone on either. He is living in the moment!

afm - finally back from our month-long trip to see my parents. DS was ready to come home 2 weeks ago so don't think I will be doing such a long trip again. He still had fun but that was mixed in with some very low, low moments and meltdowns. I do think the good memories outweigh the bad though. At least, that is how I'm choosing to see it. LOL

Lots of firsts for him and us. The main thing I learned is that it is OK to push him a little bit. When he is afraid to try something it is OK to push a little because in the end he loved whatever it was -- ie., going on a carousel for the first time. We sat on a sleigh with a bench so there was no up and down like with the horses but it was a great start. He also fed a giraffe at the zoo. That was all his idea. He ran up--barely waiting his turn--and it was over in 3 seconds but the look on his face was priceless. He absolutely beamed.

 

[alibaba24]

Hi starry good to here from you and see your getting comfortable with how best to help your son

 

[Starry Night]

I may be insane but we just took in two kittens today. We always knew we wanted to get a cat but this was a little sooner than expected and I never really thought my DH would cave and agree to two (he always said he was a 1 pet person). I have heard pets are good for kids with autism and there is that book "All Cats Have Aspergers" or something like that.

My DS and DD are really excited about them but I have to slowly introduce them to each other. The kittens are still in shock about being taken from their mother and home. They are brothers. Pickles and Pepper. lol (firm believer in cats needing ridiculous names...keeps 'em humble....our last cat was named Waffles)

 

[alibaba24]

Great names !! I follow a fb blog called letters from a spectrum mum. She recently rescued a kitten and so far its doing wonders for her son

 

[Starry Night]

Our old cat before she died hated kids but we had gotten her before DS was born and we didn't know a lot of people with kids before that either. I'm hoping the kittens will grow up with the kids and be friendly. They're still really shy. They were barn kittens and didn't get much socialization but when we first met them they were quite friendly and their mother was too. Their sister threw a hissy whenever we tried to pick her up so that's why we didn't take her instead. ha ha

DS loves animals. When they are older I will probably get them a dog too but that is a lot more work. I'm also considering a service dog which is even more work. DS loves cats but I think he loves dogs even more. But DH had a bad experience with one as a child so he is nervous around them and raising a puppy will be all on me. Too much to do with small children in the house. And DH and I both are more cat people anyways. I do love dogs still.