Is anyone else starting out on the road to a diagnosis? Fancy holding hands on the bumpy path?

[hazeyjane]

Ds (10 months) had 2 appointments in one today, a medical assessment and developmental assessment. He was referred at 7 months to the community paeds, due to developmental delays.

We are now booked in for some blood tests next week, and some physio, and have been referred to a SALT, for portage and to a special needs playgroup.

It is all so overwhelming, on the one hand I feel so much better, after months of waiting that I am able to do something. On the other hand I feel as though everyone is still scratching their heads over ds, and I just want someone to say, 'ah well Mrs Hazeyjane, your son has -- thats why he can't do these things, (well I don't, obviously I'd rather they said, 'ds will catch up and there is no issue, now be off with you'!)

I know that this is going to be a long process, is anyone else just starting out, or a little further down the road, for handholding, venting and advice?

The hearing tests are a nightmare aren't they? We've been through 5 with DS (all before the age of 6 months) and all pretty inconclusive although he responds normally to sound in everyday life... the equipment seems very basic and not particularly advanced considering what a technological world we live in today!

Glad you got your appointment date through. They often all come at once don't they? Not long to wait at least.

DS sat independently (for all of about 5 seconds) for the second time this week . I almost leapt through the ceiling with joy.

Hi all, esp all the new folk on this thread. I see theres lots been going on.

I am just re-surfacing after the nightmare that was xmas and NY. I have come to realise that my side of the family are just not really interested in whats going on and aren't really prepared to make the effort to learn how to interact with DD. Instead there is a fair amount of lets 'criticise the parents'. I am still fuming and its feb. that emoticon needs a bit more grr to really express how I feel

Gah!

Well my DD is now officially a mystery to medical science. The professionals admit they havent a scooby. They cant even score her on the developmental scale cos it doesnt make sense. So I have decided to try some functional learning exercises at home. It seems sensible somehow that if she cant bang, place, pile or sort she cant really do other things. I think there is a conncetion missing there somewhere and I wonder if we could help her make it with enough repetition...anyone thinking of joining me would be v welcome. I am going to try t get set up over the weekend.

Sorry no one is getting any results with any clarity to them, altho somewhere that is of the good. It is just so frustrating.

Congrats crazycat on the sitting - nice!

I will hold your hand if you will hold mine. I am still crying. I have read so many posts today and everyone seems to have their head screwed on, then i look at me and think my goodness i have no idea what anything means. My old HV called me neurotic and told me i should be grateful my son did nothing but sleep. I moved areas explained all my concerns and wow suddenly i wasnt crazy anymore.
Maybe i am being silly but im scared, what if i cant handle all this. I really should stop crying I just cant help it.
And i agree appointments seem to take forever.
When people seem my DS they talk to him like he is stupid which frustrates me he is 3and a half. Im gonna have another cup of tea and hope i can pull myself together.

Hi rosie I was hoping you'd make it here after I saw your post on the behaviour thread. Dont be too hard on yourself, I think most people on here (well me for sure) would see themselves as somehow muddling through and often scared of not coping, - or just plain old not coping. Thats why I post for sure.
Grr about your health visitor. I remember my confusion when I first started to suspect something wasn't quite like everyone else. So many people dismiss you, even my H at the time thought I was seeing things. Lucky for me the HV took it seriously and the GP referrred but its v v hard to think through objectively on your own.
Have a good cry, then ideally tell us a bit more about your DS - big hug and welcome

Hi Rosie, so glad you made it over here . I am sure every one of us has wondered if we can handle this. You're not alone in feeling like this and certainly not silly at all. It is a lot to get your head around, it's emotionally trying and all the more difficult because you can't easily explain what is 'wrong' with your child when people ask. One foot in front of the other, day by day... My coping strategy is making plans but not looking too far ahead. And talking. What is the next step for your DS?

It is so upsetting when you feel dismissed or that people aren't listening to you. HV's, family etc... I can't count the number of times well-meaning friends and family would look at DS and say 'see, look he's fiiiinnne...'

Sorry your family aren't getting it with DD firsttimer. So sad and frustrating for you. Mine are a mixed bag too. My MIL (who I've had an awful relationship with in the past) has turned out to be very understanding and supportive whereas my own father has disappeared off the face of the earth... He lives in the US and didn't even phone when DS was in for surgery . He forgot DD's birthday too so is all-round in my bad books right now...

I like the sound of your functional learning exercises firsttimer. Are you using a resource for info or doing your own thing? I feel like I'm constantly trying to get DS to do exercises, sit up, play a certain way, hold his own food, make word-like sounds, listen to ten different types of music etc etc etc! What kind of thing will you do with DD?

Hi Rosie,
How are you feeling now?
I don't think it's silly at all to feel scared, I think it's perfectly natural and understandable. As is not being able to stop crying when it all seems overwhelming.
I saw my GP recently and wept inconsolably at the surgery...she told me to be kind to myself and not try and minimise how stressful I was finding things or expect myself to be able to be strong every day. I try and keep this in mind, especially when I have a bad day or bad patch.
Wish I knew of something helpful to say to help with how people speak to your son, perhaps someone else here has experience of this and can help.

The functional learning I am going to do is based on a book called Every Child Can Learn by Katrin Stroh. It comes with a DVD that has video and material you can print out to make your learning tools. Its v much amed at practitioners not parents.

Anyway if you put her name into google you get a short article on the book. The basics is that v young babies learn through play with quiet concentration. So no talking, encouraging etc. Instead you sit behind your child, take their hands and essentially make them do over and over what NT babies do in the first year or so. So you bang sticks, pick up and place objects, sort objects like with like etc. You do it rhythmically and quite fast and the idea is that this is what ordinary children do to learn so you show your child how to do it. No need for praise etc as the activity is its own reward. IN fact you should be quiet to let your child focus on the activity without distraction also every action is good just for having been done. You know how NT babies are just busy and pleased with themselves for being busy - so you try to do the same tp get these 'basic learning tools' (ie: banging, placing, sorting, matching) in place. They do it for children any type of diagnosis and it seems pretty harmless. I want set up the material in her room, buy her a wee chair and desk and do this 3 times a day for maybe five miniutes building up to 20 mins.
I have had the book for a while but have been overrun with work and appts and just never really got a programme up and running. But we had our portage worker over with her toys and I was watching and thinking that DD doesnt really care about all the instructions and praise. Its more like shes trapped in there because she cant really move her body through space ion a controlled way. So how can she play if every movement is difficult to acheive IYSWIM
sorry long post but I am getting quietly excited! Will update in a month or so let everyone know how its going

I like the sound of that. I think I'll get a copy of that book, the principles you describe sound very sensible indeed. DS will bang a spoon on his highchair, and will play with a scrunchy book or a soft toy but he doesn't explore his environment in an inquisitive way or busy himself with stuff in the playroom if left to his own devices. I guess part of his problem is he can't move himself about yet, but I suspect he'd really benefit from some of those methods, thanks firsttimer, I hope you and DD get on well with it, I'd love to hear how it goes x

Sorry about your dad crazycat Its crappy when people are like that.

I wish I had of known about that book when DS was tiny he didnt do anything until 18months. IU am going to get the book anyway and see if it has any other help.
Im ok i guess i have decided to keep all his medical things organised and have a book to write down the different Dr's names what they do and what they are testing for.
I also am getting a book for school so we can track his development and show it to the various hospitals.
Im trying to stay positive but its hard but in some ways its comforting to know i am not alone.

Crazycat its interesting that your child is small my DS is 86cm and between the years 1 and 2 he didnt grow a milimeter during that time.
My DS has a curved pinky finger, small head size, slow growth and developmental delay.

The book was really expensive and no one I speak to of the various therapists seems to have heard of it. Alos not on this site...
So I dont want to recommend it just yet. But it does seem sensible in the context of my DD. I know when I first got it we did some banging and shortly after DD got her pincer grip and started to be able to use her feeder cup. But thats a long way from saying the exercises helped her do that!
Anyway it will give me something to focus on besides the testing

The DVD that came with the book also made really clear to me that there was something wrong. It showed NT children playing and had commentary on how they were playing. And I remember thinking 'yes thats it thats whats missing' It was like being given words for some previously indefineable thing that I could sense but couldn't specify. At the tme she was about 13 months and many people kept saying 'shes fine' when I asked if they saw anything different.
Now at 2 its very clear that she is phenomenally behind but back then people just kept saying 'oh she's just sleepy' or grumpy or whatever.

Hi everyone,

Hope you are all well and keeping warm, it's freezing where we are!

Hazeyjane, good luck with all your appointments coming up, esp the fluroscopy. Fingers crossed it goes smoothly. My DS2's follow up with neurology seems to have got lost in the system, no-one's called back, but I'm secretly relieved as I'm hoping it will give us a bit of breathing space after the EMG. Also our current chap is a locum and I'm hoping when we next go we can see the full timer who's on maternity leave as she is meant to be amazing.

Crazycatlady, we also live in a place where a lot of people seem to be v competitive and status orientated, which is a massive minus, luckily though our GPs are brilliant and after 10 years in the village I've found some lovely like minded friends which balances things out, so far! Fingers crossed you find your perfect home in Cornwall soon. We are hoping to exchange on a new house in the village v soon, which has kept me busy and given me less time to dwell on DS2's upcoming tests etc etc.

Firsttimer sorry to read about your family and that drs can't give you any answers re your DD. My mum has only very recently started to be less like your parents sound and a bit more understanding and supportive, I found it very hurtful and it nearly broke me years ago when I was a single parent. So I sympathise with your GRRRR! The every child can learn thing sounds like a brilliant idea.

Warm wishes to all

Hello Rosie1977, i'm glad you found this thread, it is a good place to come for a cry and a vent. I hope you are ok.

FirstTimer, that book sounds great, it is brilliant that you are being so proactive with your dd. How is she getting on? We have been very frustrated by the lack of SALT input with ds. I feel he should see someone regularly partly because of his swallowing issues, and also because he still makes no babbling sounds, just a little sort of squeak. The SALT we see at nursery just tells us to look at books together, and sing and carry on with makaton signs.

I've just had the results back from a test for PraderWilli, which was normal. This is obviously great, but ds still has to have a microarray done, although we haven't heard back from the genteticist, so i guess i'll have to do more chasing up.

Thank you hazeyjane. Everyone on here is very kind.
I should be used to the challenges of being a mum but my youngest 2 cause me stress which i know isnt their fault but my youngest DD is gifted and talented and I am constantly trying to challenge her mentally so she doesnt get bored. And DS has developmental delays which I keep trying to research but they tell me to do things i already do. Sing, talk, have conversations with him.
And I understand about people around you being negative or thinking your making it up. My HV still believes my DS is normal with his development.
Tomorrow morning OH is taking kids to his mums and I am going to sit and plan what I feel I need to do. Atm I feel like everything is so confusing and disorganised.
Tomorrow i will make a post and ask people to see if i have missed anything or need to consider in my list.

Many thanks again to everyone for being kind.

Today DD turns 2. My family have sent text messages or emails but nothing else not a card or a pressie or even a phonecall. According to them its my fault they cant support us because I am angry and unfriendly. I am angry and I am unfriendly, mainly because I am tired and overwhelmed by the events of the past year. It seems to me that this is my family's way of blaming me for them finding DD hard to bond with.

I am coming to the conclusion that I need to stop expecting or hopiing for supoprt from my family bacause I am continually disappointed. This is an old family pattern where for some reason I dont really count. I feel I cant spend any more of my severely limited time and energy on my family and trying to figure out why it is like this or how to fix things and improve relationships. Instead I think I need to let it go and focus on getting support from those relationships I have that function normally.
Does that sound v harsh?

Happy Birthday to your DD.
And of course your angry, this wasnt in the plan, but it has happened and you have to find some way to accept it. (i say this but yet cry all the time and feel like i am to blame and its all my fault for everything).
My DS was also very sleepy as a baby (he still is) people kept saying i should be grateful my child slept so much.
Concentrate on the people that do give you support, hopefully one day your family will wake up and realise what a beautiful treasure your DD is.

And you dont sound harsh at all, families are strange things at the best of times and are complicated at the best of times. Give yourself an emotional break...This is your DD and your big day.

Happy 2nd Birthday BabyFirstTimer! (well, not such a baby anymore...). I am sorry your family have been difficult. It is sad because it is your DD who is losing out on having her wider family around her or sending thoughtful cards and gifts for her birthday. At 2, she probably won't notice, so it is you who feels the hurt, but by next year she'll know what's what.

I think all you can do is to explain your disappointment to your family in those terms and make it about her rather than your own feelings. Of course, your feelings should count to them too, but their ears and hearts may be more open to what you have to say when explained from DD's (future) point of view.

In the meantime, having a break from what sounds like a difficult situation for you may be a good idea. Focus on your DD and the positive relationships you have in your life for a while. There is so much emotional energy invested in caring for children in our situations that there is really not much room for negativity or awkward behaviour from others.

Sorry that was a bit of an essay. I've done a lot of thinking about personal relationships over recent months for similar reasons, both friends and family. Having DS has changed my perspective to such a great extent, I value relationships more and work harder at them, but equally have much less patience for putting up with people who bring me down, don't invest the same level of commitment in our relationship or insist on competing with me at every turn!

Oh firsttimer, I'm sorry your DD's special day has been marred by your family's behaviour. A very happy birthday to her, I hope otherwise the day went well...It's my DS2's 2nd birthday today too...I had to remind my mum last week as I knew she'd forgotten it was coming up but for some reason that didn't bother me. What did was that my (only) sister forgot too. Completely. I looked at the letterbox on Saturday morning like a teenager on Valentines day hoping for a card that didn't come. I have been trying not to feel angry ever since but still I am. I am working on the basis that it's not that my sister doesn't care, it's that she's too caught up in her own life. This however has been the case for many years. Don't know how to handle it if/when she remembers she's forgotten either. Families!! Wise words Rosie on that subject. Hope you got your list done this weekend and are ok.

I don't think what you plan to do is harsh, firsttimer. It sounds more like self preservation at this moment in time. You can always rethink at some point, if you are feeling strong and want to have another crack at getting through to your family and trying again to make things better. You are almost bound to be feeling the way you do after today. If only they could have some sort of epiphany and be more supportive.

Hope things get easier soon

Didnt get my list done DS wasnt feeling great Saturday and when he is sick omg he clings even worse to me. And today my DD needed to play in the snow so i was constantly mopping the floors.

I found a website which describes some of the Autism signs and OH and I will go through each one and describe if our DD behaves in that way and if so give examples etc so that we have a clear list to give to the hospital on Wednesday.

We have alot of people telling us DS will just grow out of it or we are making more of it than we need to...its absolutely pathetic that people actually think that we as parents dont know something is wrong with our DC.

People should be more supportive in general. If our DC start making a noise in the supermarket or throw a tantrum my goodness the amount of people that tut at me and make me feel like i am useless.The worst ones are generally the older generation that seem to be forever telling me my son needs a clip round the ear for his behaviour or they shout at him as if they have some god given right.

Oh Happy Birthday FirstTimer's dd - I hope she had a lovely day, and that it wasn't too marred by family strife.

I think we are lucky that we have the dds as well as ds, as they divert a lot of the attention, and it is not so focused on what ds is or isn't doing.

I feel as though he has made such huge progress, he is 19 months old today and able to edge his way along the side of the coffee table (4 months ago, i couldn't imagine him walking), he signs 'mummy' and 'more' and makes a hand flap thing when he is with his sisters, who he adores.

I feel like being nothing but positive about him (probably because we have a meeting with his consultant soon!), he is so gorgeous (have made profile public so everyone can admire!)

Hope you are all ok.

Thanks for all the nice birthday wishes. She did have a lovely day. And its not the lack of presents thats the problem its that my family spend their time working out why their not supporting me is my fault. Somehow if I were different this wouldnt be happening to us and they would be really helpful...
It messes with my head, because life is hard enough as it is at the moment without the pressure to think that its somehow my own fault.

deep breath:

rosie that sounds like a good plan, sounds good you are making time to talk through stuff with your partner. I find often one parent races ahead of the other and you end up getting frustrated with each other. My H has done a Hanen course recently. As well as free up my time its been great for putting him in the driving seat on an issue that affects DD. Sorry about the judgey pants in the supermarket

hazey its nice to actually see you!! Wierd I feel like I know you - we have been on these boards as lurkers and finally posters for roughly the same time. What a cutie your DS is, everyone else too, naturally but hes seriously cute!

crazycat and big thanks for the wise words. I know you are right, its just tough to do.

Onward and upward today. I am waiting for someone to buy DDs playpen so I can redo her room with a workstation for her new learning programme.

hazey your kids are gorgeous. I have a Hello Kitty obsessed daughter so the one of your DD in a Hello Kitty t-shirt made me smile.

Will check in again later, hope everyone has a good week.

Nerves have kicked in now about Wednesdays hospital appointment. Peadiatric Endocrinologist i have googled and apparently its hormones but i am still none the wiser.

Ive read alot about Autism and the spectrum, some of it is just utterly confusing and other bits just fit DS so well.
Im trying to be practical, trying to be rational but its not happening. I guess it doesnt help that DS is once again laying in my bed snooring, he hasnt slept well since we took his cot away at the age of 3.
Maybe i am stupid but i cant help feeling i did something wrong, when he was 8 weeks old his sperm donor left me for my friend and I had so much on my plate with DD. I knew he was different from the day he was born, i would mention it to the midwife and HV and yet i obviously felt reassured because i didnt argue to much.

I do wish i had of paid him more attention. Today i guess has just been one of those days where he has taken alot of my energy.

Sorry for the moan. Just throw rotten veg at me.

Hey rosie, go easy on yourself. The appt will doubtless be disappointing. Dont spend the time until then ripping strips off yourself