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Help I'm panicking...

(14 Posts)
readyornot2011 Mon 06-Mar-17 11:22:32

My DS is 2.5 and doesn't speak (except 'ready steady go') up until a month ago I wasn't worried. He was a very easy going baby, good eater, good sleeper. A month ago we went on holiday to a family hotel and he struggled, he was anxious all week. I started reading about speech delay and it dawned on me that maybe he could be on the spectrum... he doesnt point or wave, loves to follow lines on the floor, likes routine, communicates by leading me by the hand to what he wants, he does have some physical 'tics' when he is excited, he also looks at things from odd angles when he's engrossed (toys, bubbles etc) he is also VERY anxious to be left with anyone ne me or DH, will scream even if I just go upstairs and leave him downstairs with gma (fine if gma isn't there!?)
So I read up on autism and then found loads of things that don't fit. He doesn't have big sensory problems, least fussy eater ever, generally relaxed out and about, like routine but easily distracted if something upsets him. Very interactive with us and his sister, very coordinated with football/stairs etc... no problem with eye contact.... , will now point to things (after a lot of work) and is happy to sit still reading with mummy or is the car, he's certainly hit the solitary, stressed kid I'm reading about in the books.

It's just such a wide spectrum, and so many things a 2.5yo does normally fit on to it. I'm so confused.

I've got myself into an anxious wreck worrying over this, which is so unlike me. I'm normally very pragmatic and reasoned and confident in my parenting. (Yes I'm one of those awful smug bitches with easy kids- or at least I was)

He is going through a difficult phase with a lot of screeching, and his sleep is suddenly more disturbed. I can't keep any of this in perspective anymore.... his screeches are like knives in my heart and even when he sleeps Fine I worry about him waking.

I looked back in my baby book and he went through a simlar difficult phase just before he started crawling (NO interest in moving until about a year, then was crawling to walking a few weeks). So maybe it's just the frustration before he talks.... (she thinks hopefully.)

We are starting the assessment process for autism this week and for now are concentrating on Speech and language therapy, which is expensive and time consuming (we live in france and I have to drive into Paris for the apts so it's 4 hrs of my day twice a week)

A month ago I was a happy relaxed proud easy going Mum, now I'm so anxious and stressed. I want to help my son.... but I feel out of my depth here.... help!

zzzzz Mon 06-Mar-17 20:06:31

Ds has autism, he is not at all solitary and stressed grin. He's bouncy and over enthusiastic, severely language disordered but at 11 can now make himself understood. He is routine bound in a "I like to sit in my seat in the car way" but not "I have to do the same thing every morning". In fact he loves holidays, trips and different days. His diet pre-school was slightly more limited than his siblings but is now tediously limited (and we are foodies confused )

Frogandbear Mon 06-Mar-17 22:06:59

My DS also has autism. He is very easy going, no routines, no behavioural problems, sleeps well, eats well, good eye contact, loves people to interact with him, would rather chase me down to play with him than play alone. There are so many aspects of autism that he doesn't 'fit', in fact I would say he is fairly atypical, but he still has autism.

Autism does not mean the end of the world. My DS is so beautiful, bright, funny and affectionate. He is EVERYTHING to us and I would not change him. He is a far, far easier child than his brother who does not have autism. grin

readyornot2011 Tue 07-Mar-17 06:25:41

Thanks for your replies. Frogbear can I ask what alerted you to your sons autism?

Frogandbear Tue 07-Mar-17 09:33:29

Ready At 20 months he had a huge regression - he went from being a happy, chatty, bubbly baby to losing his speech and lots of skills. It was a horrendous time for me, particularly as DH and my family refused to acknowledge that anything was wrong sad. However, he is 3.5 now and his skills have come back apart from his speech (he still doesn't talk). He is now as I described above, but for about a year, we saw no progress whatsoever, he would completely ignore us, ran up and down the room constantly, wouldn't play with toys or do anything with his time sad.

readyornot2011 Tue 07-Mar-17 13:21:23

Oh Frogbear, you must have been so worried, and with no support from your family either. I really feel for you. We def had regression around that time too although it wasn't so marked that I worried at the time. His 'words' were minimal and not that convincing anyway (dah for thank you sort of thing) but gradually he stopped using them and stopped joining in actions with nursery rhymes and stuff, stopped pointing to body parts.... I only saw this with hindsight though. It's not like he changed over night or his personality changed. He started d
Not wanting to be left with anyone but me and DH but that's not unusual at that age. So I didn't worry.... until now.

Does your son do any speech therapy? We have just started and the lady is lovely. She is using a system called PECS which DS is getting the hang of. I can see that's it's a great communication method but our son doesn't have a problem communicating, he just doesn't use speech and I can't yet see how PECS will lead to speech....

PunkyBubba Sat 11-Mar-17 21:38:43

Hi Ready

I could have written your message 3 years ago when DS1 was 2 years old. The 'mild' regression sounds so similar, with few words initially anyway, so when he stopped using them it wasn't noticed so much... He also stopped joining in action songs and pointing to body parts.

Looking at things from odd angles was the first thing picked up by the private speech therapist we hired when DS1 was 2 years 3 months... and she first mentioned seeing red flags for autism.

Similar to you though I read up online, and lots of things didn't fit.. He ate very well, could self soothe to sleep and sleep through the night, was physically advanced, and with familiar adults was affectionate, and generally a happy and smiley child. I would tell any professional that asked how adaptable he was, and how I could take him anywhere, and we didn't have to follow routines.

Unfortunately the online information didn't explain that things easily change.. Between 2.5 and 3 years old (can't remember exactly) the sleep went to pot, and he started completely refusing to eat anything that wasn't 'beige'/dry foods.. and the list of what he eats became more restrictive as time went on.. Sleep-wise he needs melatonin or would be up until midnight, I have to lie with him until he sleeps, and he rarely sleeps through (sometimes waking for hours at a time, or up for the day at 3/4/5am).. His anxiety has also increased as he has got older which has impacted his need for routine.

I refused to believe it could be autism for a long time (though still seeing all the professionals, etc). He was diagnosed at 4 years old, and by then I knew 100% it was the right diagnosis.

Now DS1 is 5 years old and attends a Special School. His speech has come on in leaps and bounds since he started talking just before his 4th birthday, he has a fantastic imagination, is very loving and caring, and this week we had a brilliant report from his school about how well he is progressing.

You mention PECS, well I know it works brilliantly for some but I personally did not feel it was helping my son. He never had any interest in PECS or Makaton and never used them no matter how hard I or others tried.

Allthewaves Sat 11-Mar-17 23:07:21

No one ever realises my middle ds has asd. He had severely disordered speech but we are just at slurry words now and baby sounding at 6yrs BUT he is bright, bubbly, chatty, sleeps well, eats amazing variety if food - he's a texture fiend. He is fine in environments he can exhibit his own control or when he's with a beloved adult. He can't cope with the order of a school day or pressures in a classroom.

His disgnosis surprised me tbh (I was thinking add) but as they talked me through his assessments it did make sense - it took nearly 2 years of assessments to diagnose him as he was referred in preschool (he had a yr of intensive single and group speech therapy)

readyornot2011 Sun 12-Mar-17 17:04:12

Thank punky, I appreciate your honest reply but the idea that sleep and food are potentially going to go out of the window over the next 6m has sent my panic into over drive

Noisette123 Sun 12-Mar-17 17:20:53

Message deleted by MNHQ. Here's a link to our Talk Guidelines.

Biscuitrules Sun 12-Mar-17 19:13:03

Its hard isn't it. My DS (just turned 3yo) is also very easy-going and affectionate, loves going out, has no routine or sensory issues, sleeps like a dream and eats pretty much anything. His problems are language/social communication related.

He has only 1 or 2 words (although good understanding) and limited social interaction e.g. he will follow an instruction or do something exciting with us, and can indicate what he wants by pointing or dragging us, but doesn't look at us and has virtually no social interest in people.

I too for a long time assumed it was no more than him being a bit slow talking, due to the fact he didn't meet the stereotypes for ASD. We saw a wonderful NHS paediatrician who pointed out that he "wasn't socially motivated" and I began to notice a lot more.

The current position is that we have a provisional diagnosis of "social communication disorder" (basically autism without the sensory and routine issues) because he did not tick any of the boxes for that category and that was essential for the autism diagnosis.

I'm happy with this as it describes him accurately. The interventions we have been advised to use are the same as one would use for autism. Ultimately I believe that the current label of "autism" covers a wide multitude of different things and therefore its wise not to get too hung up on the label or assume that because your child may fit within the ASD diagnostic spectrum he will develop in a particular way as each child is an individual. I don't know what the future has to hold for us but for example we haven't (as yet) had any regression in sleeping or eating.

PunkyBubba Sun 12-Mar-17 22:55:26

I'm sorry Ready, I really didn't mean to panic you! I tend to just throw everything out there without thinking. If there is anything I've learned from these boards it is that there is no pattern to autism. Every child develops differently, and just because my DS1 developed in a certain way doesn't mean yours will too.

Heytheredelilah1987 Mon 13-Mar-17 13:20:04

This is very interesting to read. My son is 2.3 and is undergoing assesment for ASD. Things first came to light around 20 months. Family members pointed out he may be a little "differebt" I had suspected as much myself, but never truly believed he had ASD. We have done a lot to bring him on and I have seen a big improvement in his social skills (with family) and also with sharing points of interest. Speech is still lacking (he regressed with speech at 20 months ) but is picking up again now (he says again round 10 words) he does have his own little language too though. He will use words he's made up consistently. At present he's doing well and some have said he appears like an average 2 year old boy ... but if you know what to look for you can see there's asd traits ; too many to brush off.

I'm more hopeful than I have been about my sons assesment. I believe he will be diagnosed with HFA, but I am aware from our own experince , that this can all change - and I try not to fixate too much on levels or degrees of ASD and just focus on bringing him on right now. My head wonders way off to the future a lot thiugh. It can be so hard. I hope you get the answers you're looking for.

Heytheredelilah1987 Mon 13-Mar-17 13:21:32

Sorry for the ramble - I don't even think my post is that helpful! But just wanted to say , I get what you're saying and my son is similar to yours in ways smile

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