Just a huge moan really, sorry! Ds,21 months-gdd etc, struggling a bit atm, blah, blah blah...feel free to ignore!

[hazeyjane]

Stupidly went to a singing group with ds this morning, that i haven't been to for ages. It is run by a group of mums, I used to go with the dds when they were tiny, and it was always one of my favourite things to do. Every child there was streets ahead of ds, even the 9 month old was crawling and shaking maracas, 2 things that ds can't do. 2 of them had just started walking, (1yr and 16 months). All the mums there know about ds and his delays, but I don't think I was prepared to see such a huge difference between them, and I could see in their eyes that they weren't either. I think it seems more marked because he has lost a lot of weight recently through illness, and looks more like a little boy than a baby, he was also very very clingy, so just wanted to cuddle up on my lap, whilst all the other lo's explored and played.

I am full of anxiety at the moment, 3 of ds's appointments have been delayed, and our support is either slipping away or isn't working as it should. I am suddenly full of panic about the future, and sitting in that lovely room with babies and toddlers just mooching about in such a carefree way suddenly seemed a million miles away from worrying about genetics tests and physio and what the hell to do about special needs nursery and the fact that ds won't let another adult go near him. I sat and drunk up my coffee, and smiled and said how lovely it was to see everyone, and walked home and cried and cried.

I probably shouldn't have gone, but that's stupid isn't it? Ds will grow up with these children (we live in a small town, and are part of a tightknit community through dh's work) it's good for him and them to participate in these things together, isn't it? I know I need to toughen up, but I felt as though I was in a little bubble in that room this morning.

Anyway, I'm sorry to have a moan, and it doesn't matter if no-one posts on this thread, it feels good to get it off my chest.

It's not a case of toughening up, it's completely normal to find these sort of groups hard, it's up to you whether you think the benefit to attending outweighs the upset. Or whether it might be worth having a few weeks break, before trying again. I remember over 4 years ago, going to one session of JoJingles where DS clung to me and wasn't intereted in participating and going to one session of Kindermusik, where I couldn't handle him being the oldest but least able child in the room. So you are made of sterner stuff than me, who bailed after once session

Oh I completely understand how you feel. We are actively avoiding any toddler groups etc as it is just so depressing to see others so far ahead. I take DS to park because he likes swings and I try to talk to him and teach him gestures while he is there (unsuccessfully I might add) and I see other kids so much younger than DS picking up stuff from me and it makes me so angry I can't tell you. I hide it and smile offcourse, what else can you do. I wish I could tell you something to make it better but I can't.
I have read your other threads and I will say this, you are doing a wonderful job with your DS and he is very lucky to have you fighting for him. Best of luck with everything. Hope things get better for you.

Totally justified to feel like that hazey. But you're like the rest of the SNMN - you pick yourself up and keep on fighting the fight - 'cos thats what we do.
Maybe too early for ? But defo a . If there was a or emoticon - I would have offered that too.

Oh Hazey!!! It's truly the crappiest feeling ever. I have been there too many times over the years. You will develop thick skin, soldier on and just cherish the small things. My DD is deaf and has had 26+ surgeries on her skull and neck. When she came out of SCBU at 5mos I used to force myself to go into M Keynes most days as I needed to face the stares and the gasps of horror at this tiny baby with no ears and tubes coming out of her nose. She's now 12 and gorgeous. DS3 has the same syndrome and is deaf, non communicative and Autistic. I'm surprised that they didn't Dx him with GDD as well tbh. But we go out and do the things he can manage, and I do it at his pace. I stopped crying a long time ago as it is what it is. We love him, he's happy and that's all that matters. We all have days like this Hazey, truly.

Hazey, I know exactly how you felt having been there with DD (ok it was 15 yrs ago). I had met all these mums at antenatal classes and we all went to a Music for Tots session together - only thing was my DD was not a toddler - she couldn't even sit up unaided, she was registered blind and wore hearing aids. Added to that she had severe developmental delay. But I just explained to others about DD's condition and told myself that even if she couldn't take part herself, just being in the room and listening to the singing and music was good for her and more importantly, it got me out of the house.
Over the years I haven't seen much of these Mums or their children as DD went to special school,but I do bump into some of them now and then and they always ask how DD is. We live in a village surrounded by lots of other villages and 2 small towns, where everyone knows everyone. I just had to get out there and do what was best for DD whilst educating the masses about how life isn't the same for everyone!!!
It isn't easy being in that situation as it always makes you think about what might have been - but your DS has a right to be accepted as part of the community. If all he wants to do is sit and listen and be cuddled, then that is enough - as long as the sessions don't distress him, he is probably getting something beneficial from it. You will learn to cope with the 'what might have beens'.

Hi Hazey. I know how you feel. I felt the same after a group last week when after 3 or 4 mums had said "how old is she? Almost a year?' and I had said "no, 18 months, but she has developmental delays" because she clearly had so much more in common with the 1 year olds than the older ones. I felt so low about how DD might struggle in the future, about what else she will be diagnosed with... But then I went to see a friend the following afternoon and rememberer I can still be social and get out without having to go to groups which depress me. I will go again mind you, as you said these are the people DD will be at school with, and this is a small village, so I best just get my skin thickened.

Feeling for you, remember you are not alone though

I can totally empathise with you on this. We go to some mainstream groups and some special needs groups, I just don't know where we fit in, or if we ever will.
We switch between a singing group for babies under 12 months, my DS2 is 23 months old, so he sticks out like a sore thumb, or the older group for toddlers where again he sticks out as he can't walk!
But, I do think most parents are so wrapped up in their own kids they really don't give that much thought to others. Once I have told them my son's age and they kind of figure out he has a developmental delay they go back to dealing with their child.
It is hard though, not denying that :)

Poor hazeyjane. I don't know what to say. I take ds to lots of groups where he is oldest, tallest most unco-ordinated child. But he enjoys them, esp music ones and his joy helps me keep a thick skin.

I wish children could go to school and groups for their stage rather than age.

Oh hazeyjane, I do this too. So often and it is so so hard

I have felt very similar to you and now have the approach of only doing those things that I think dd will enjoy and which won't be too hard for me. I still find such groups upsetting so I avoid them.

Hiya Hazey.

I just had this but in a teenage way. Just been to a year 9 options evening. DD is being guided down an 'active' pathway which hopefully will end with her getting 3 or 4 GCSEs. All her friends (who she has known since birth) will be doing the 'normal' 12 GCSEs route. I'm a bit gutted. It hurts.

PS - Tis I AYC will PM you.

Tispity. ((hugs))

I really feel for you and had a lump in my throat reading this. Only 2 years ago I was in the exact same situation and was almost relieved when the crippling back pain of my 2nd pregnancy meant I couldn't lug ds1 to any more music sessions, playdates or playgroups, as I felt more alienated each time I did.

I began to feel a lot better when I stopped trying to 'fit in' and follow what my and his peers did. Getting a dx really helped and so did starting some therapies.

All I can say is its tough but you aren't alone :)

Hazeyjane, I feel for you and completely understand how you feel. We were you 2 years ago. DD2 is now 4.8yrs. It's incredibly hard, and I have grown quite a thick skin (still not thick enough at times).

As hard as it is, and there will be times where you just want to distance yourself it's still worth keeping up the friendships with the mums. DD2 cannot make friends at all, has no clue when it comes to socialising, however due to having many mums as good friends with children DD2's age she actually has a pretty good social life. The gaps are enormous, but my friends have very understanding, kind children who play beautifully with DD2. I'm not kidding myself, I'm sure the day will come where the gap is so big they don't want to bother anymore, but as it stands right now it's all good.

All I'm trying to say (in a very long winded way, sorry) is it does get better and easier to deal with.

I'm watching the gaps widen with DD now.

She's 2.5 & has a working diagnosis of ASD, she's on the waiting list for assessment.
The was 3 little girls born within 12 weeks in our extended family. DD is the youngest.

The gaps between her & the other 2 growing fast, they are talking & being potty trained & DD is nowhere near. Same with the local groups.

It is hard isn't it

I just wanted to say something. I really hope it comes out how I mean it to.

Although I don't have special needs children, I do have a special needs older brother, who is now in his 40's. It must be so hard to sit around with all this seemingly 'happy care free families' - and it must make you feel sad sometimes - but there are people like me, who have lived with a special needs sibling for a very long time, you won't know about us, but we will smile and perhaps try to start a conversation.

We are everywhere.

Well said daytoday
I have a little boy coming over to tea today, his mum thinks that he has Aspergers and I think she is right. I invited him back as he plays with DS2 occasionally and I can see huge similarities with him and my DS1 who also has Aspergers. When she said that he was excited and worried about coming here, I reassured her saying that there was lots to do, space to play, a place to have some quiet time if it all gets a bit much and that I remembered being in her shoes, no invites back for tea, no parties to go to, no sleepovers etc. She burst into tears. She had no idea about DS1 as its not something that I talk about as he is in Secondary School. So yes, we are all about even if it's not blindingly obvious to the world at large.

Thankyou so much all of you, the SN boards are amazing, I really thought i would post my whinge and get it off my chest and that be it, but you have all written such lovely posts - I don't know what I'd do without this place.

I had moaned to dh as well yesterday and he came home with a bottle of wine, and we talked about it all, which was good. He said it is so different for him, because, whilst he goes to the appointments and sees ds in relations to our dds, he never sees him in relation to other children, so it is easier for him to see the positive progress that ds makes and not see how different he is.

As far as toughening up goes, we decided it is bit like going for a walk and falling in a pothole, every time you do it hurts, but the more potholes you fall in, the better prepared you are and (maybe) the less it hurts!

So this morning we went to a music group (this is a different one, and is amazing - the lady that runs it includes lots of Makaton and sensory stuff, she focuses a lot on ds and it is very structured so no room for chit chat!) and went swimming, which ds enjoys, then met friends for coffee - it was lovely and (as you rightly point out, Justa) as good for me as it was ds.

We also went to the local montessori nursery and spoke to the woman who runs it about ds potentially going for 2 mornings a week in Sept. She would be happy for me to attend as well, she is arranging a meeting with the SN nursery he attends now, the area SENCO, me and his SALT to discuss whether they would be able to meet ds's needs. This makes me feel a whole lot better - even if it all goes arse over, I feel as though we at least have a plan!

It's good to know that it is not just ds who is clingy - at the moment it is just me, even dh doesn't get a look in, it is exhausting, but I cling on to the hope that gradually I will be able to spend a bit of time away from him, and all the therapy stuff won't just be down to me and dh.

Once again thankyou everyone, I hate that we all feel/or have felt this way, but it is good to know I am not alone.

for us all.

Glad to hear that you had a far better day Hazey. ?

Oh, that was a bit strange - after a brilliant start to the day, and feeling as though i was being really positive, it all went a bit wonky.

Ds had a videofluoroscopy a couple of weeks ago, it went really well, and we were led to believe that ds wans't aspirating food, but was potentially aspirating saliva, at night which causes episodes of choking and recurrent chest infections. The feeding specialist who was present came round today with the video of his swallow (I had been feeding him so had missed it) to talk through it. I really thought it was just going to be a formality of watching the film, so when dh called and said he was going to be late, i thought, no worries. Its a nightmare, the dds were tired and hungry and wanted to watch tv ('look kids lets watch an exciting film of your brother swallowing yoghurt!!!) ds was tired and clingy and was screaming because there was a strange person in the room. It was really difficult to take in what she was saying, but basically, it turns out that he is in all likelihood aspirating food (silent aspiration?) his swallow and oral motor skills are not good, we may have to discuss whether a gastrostomy tube is put in for a time and a ph probe needs to be done to work out what is going on wrt to his reflux. It was kind of the opposite of what was said after the actual videofluorocopy, I'm a bit thrown.

Hazey. You're at the JR aren't you? You need to get him on a regime of Azithromycin which is a prophylactic antibiotic and omeprazole mups. This will help with possible reflux and help keep his chest healthy until the ph probe study is done. If you can I would see Dr Ann Thompson at the JR. She is a Paed who specialises in respiratory conditions.
Don't forget that they push them to swallow quickly for the videofluroscopy, and the cut off flap can be slow in cutting off the airway during the swallow. My DD has a terrible chest, and we were told that more than two chest infections a year means that there is an underlying reason. In DD's case it turned out that she has night time reflux and a collapsed damaged lung.

Hello SallyBear, it was actually done at GWH in Swindon - ds was seen by Dr Pike at JR, but there was a lot of confusion about where the videofluoroscopy should be done, and we ended up having to wait about 7 months. Annoyingly when they do them at GWH they are recorded on old style video, so the images aren't very fine. Amazingly for ds, he was actually very calm during the test, sat quite happily in the chair and it was just about the best eating I have ever seen from him.

Ds had 6 chest infections in his 1st year (1 hospitalisation), and 2 since xmas. He was in hospital over xmas, on an antibiotic drip. I will ask his consultant about the possibility of being referred to Dr Thompson. Thankyou.

We had our videofluroscopy done at GOSH. We saw a Speech Pathologist there Alex Forsythe and she carried it out. It was amazingly clear and it went back to the JR. The collapsed lung investigation was also carried out at GOSH, we saw Mr Kilner of the respiratory team. We were referred to GOSH as DD had very complicated palate surgeries done there. Thats why she had all of these investigations.

She has seen Dr Thompson at the JR since she was born. She saved her life, I will always be grateful.