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?

Meant to add, I am really interested in ABA atm, and going to ask at our net paed appointment about it I think. Let us know how it goes!

Thanks for that usedto. I feel having something to balance out focus on D would help me too. Good to know your employers were supportive.
I will post on the ABA once we gte going. On NHS there is no provision at present - D is 27 months so 'too young' to assess. They have said they will talk through referral to communications at next appt in June but that referal too young is not helpful as cant assess.
Privately I have made contact with 2 organisations that do ABA and both would be prepared to work with young children with GDD and think ABA would be helpful. I am a bit cautious as of course they would say that. But the charity status of this org makes me more confident. I am not at all clear that DD has autism btw just it does remain an option to explain her development. I found it very daunting to investigate ABA online - so much info etc but talking to organisations or even posting on here broke it down into something more manageable.
Good luck with peads - I have the impression public provision (where we are at least) is pretty minimal on ABA

Fantastic news Firstimer, I'm so pleased your DD has stood on her own. It's a huge achievement.

I'm feeling much happier today as DS1 has started saying "yes" ( or "ee-yeh") and DS2 is joining two words together (Mummy Dink, Mummy peece). So cute. Just feels weird when we're out and people often think they're twins.

Spent the morning filling in the dreaded DLA form.

Still, tis done now.

hanbee - big squeeze, good you are getting on with it no matter how unpleasant. I have not managed to force myself to do this - despite loomoing financial showdown...

Everyone please cross your fingers for me on the job front - the interview was amazing, I love them. I dont know if they will love me enough to change their current strategy to have me. They want to open an office in London - I am in Edinburgh. Its a long shot but ohhhhhh!!!!

Ooh, i will be keeping everything crossed for you FirstTimer.

Well done on doing the DLA form, it took me about 4 weeks to do ds's, it cost me nearly a tenner to photocopy by the time I had put all the supporting letters in - then we got turned down, I was gutted, although I was warned by everyone that babies of ds's age without a diagnosis,often get turned down. I went for a reconsideration with 2 letters, one from the neurologist in Oxford and one from ds's consultant and we were more successful, i also claimed carers, which is handy because there is no way I can work until i can leave ds in childcare. I used to run my own business, hopefully one day I will again, I miss it!

Ds has his second hearing test tomorrow, dh is convinced they had just cocked up the first test, but I am not so sure, some sort of partial hearing loss might explain some of ds's blank moments. Anyway, keep your fingers crossed that dh is right, and we can cross 'concerns over hearing' off the list!

Good luck with the hearing test hazey. I hope your sons clinginess will gte more manageable over the next year - I cant believe they refused you DLA! Seems crystal clear how you are in a situation that requires more work than would usually be the case. I really really need to fill in that form...but its stories like that that make me not want to even look at it (all that time, all that having to be negative and then it may very well not even pay off)

On a slightly diff note Amazon have cocked up and I find myself in possession of a spare copy of Barbera and Rasmussens: The Verbal Behavior Approach: How to Teach Children with Autism and Related Disorders.

Its what has been recommended to me by ABA tutors and on SN board as a starting point for ABA.
Anyone interested in a freebie?

Yes please First timer!!

FirstTimer, I got the impression they didn't even read the form first time round (eg they said that ds had no need for care at night - despite being up for 2 or 3 hours a night and waking at 5 every day!). I think the main thing is good supporting evidence from people involved in dcs care.

How lovely to have been sent dresses, Mumsnet never fails to amaze me - I was on a thread about reflux when ds was tiny, and a lovely mumsnetter sent me a reflux wedge, ds has used it ever since, it is amazing, and I don't think I'd have even known about them if she hadn't sent it to me. I burst into tears when I got a secret Santa present, it is such a lovely idea. You hear a lot of stuff about bitching and bullying on Mumsnet, but not so much about the wonderful support, advice and generosity. (I won't embarrass SallyBear by thanking her for the amazing advice and help over ds 's feeding issues - oops!)

Firstimer, glad the interview went well. You deserve something positive to happen for you so I will be crossing everything that you get the job.

I procrastinated for 6 months with the DLA form but they've changed the form recently and it's not as bad. The lady who came from Contact a Family was very helpful and told me exactly what to write to get them to understand the situation. I wouldn't have written many of the things without her advice, I think simply because you get so used to your every day life and as I have no older child I'm just not aware that most 3 year olds don't need the care and attention that DS1 does. I have photocopied tons of letters, plus portage activity sheets, nursery development reports, IEPs etc. Which hopefully will show how much extra support is needed.

Hazey, good luck with the hearing test today.

Aw shucks Hazey! You are most welcome.
Anyway - best of luck with the hearing test. Most audiologists are really good at keeping the kids engaged during the testing. I also make sure I have some silent toys that do things in my bag, just in case! Slinky, light spinner, one of those gooey spiky things that you squeeze (forget what it's called now), a car etc. I have found that it's helpful to have back up stuff incase their spinning tops or stacking cups aren't "doing it" for DD/DS.
DLA form was made massively easier by the Cerebra guide. I don't claim anymore for DD, as even though she is deaf and has SLT issues, she doesn't need anymore care over and above her two brothers. Her third brother needs all the help he can get. We got our Blue Badge yesterday!! Getting the motability car next week!! Very exciting week in the Bear house

Expecting DLA renewal any day so glad to hear its changed! Well done getting yours done Hanbee.

And fingers crossed firstimer about the job!

I spent mon night very worried as had a call from the consultant which I missed and a message to call back next day for a chat about some test results! It turned out to be not as bad as I feared but I have had to up DD's steroids which may cause sleep problems-I am anaemic and extremely tired and emotional with DD's behaviour getting worse at home and school so hoping she isnt too badly affected-having sleepless nights with her again would be the last straw just before a new baby.

Thank goodness for my lovely mum friend at school who has an older dd with some SNs. I have been so desperate about DDs deteriorating behaviour at home and school that I have been in touch with a local special school today-they are private but have referrals from LEAs all the time so I think I may go and look around in case mainstream still doesn't work. Really need someone to go to school to help with behaviour stuff-was so upset yesterday at hearing how they had handled it and feel DD is not really ready for soem of the stuff thats happening in mainstream.

Thanks for good wishes re job. Still havent heard anything so my spirits are flagging by the hour.

Trying to stay on track with everything else I have to do, prepare for bad news by keeping to my overall plan. Need to do that damned DLA form this week.
I know what you mean about mumsnet Hazey - I only seem to gte the good stuff myself. This thread has been so important for me for the last year. Just to know I am not alone is something. But theres also all the help and advice and the chance to run things by people. Otherwise I would be convinced I am both mad and unreasonable by now!
Used to - try to keep on top of the iron defieciency as best you can. Anemia is really insidious as you feel you are being lazy or depressed when in fact its just physical. I found floradix and spatone really good but often just used bog standard iron pills - cheaper and less nice but just as effective.

Thanks firstimer I had been feeling dreadful-and very down so that rings true. Just got a nuilder in and had to drive to my mums to be violently sick-don't think the tablets agree with me seem to remember this from last time too so will ask the dr if I can use one of the liquid ones instead. Meant to be getting so many jobs done and am going to bed the min the builder leaves!

Re job, my dad says they always call unsucessful applicants first to get it out the way so a wait may not be a bad thing. Agree this thread and mumsnet are soooooo needed ad helpful. Dh even just does not get how much this wait for diagnosis and struggle to get dd's needs met takes its toll on me-he told me yesterday he doesn't want me always angry at the world because some of it I can't change. I know what he meant but just think I have to fight for the best DD can get.

Used2 I was anaemic in all 3 pregnancies and found having 2 spatone a day in orange juice worked ok, I found the iron tablets gave me awful headaches and constipation. When is your due date? The last bit of pregnancy is so knackering, look after yourself.

Ds's hearing was all clear - yay! The audiologist said she thinks he was just not connecting the noise with the dancing puppets last time, but he heard everything this time.

used to - the tablets are hard on the stomach and give you constipation. But..cheap...The liquid stuff is infinitely better. If you hassle the GP you can even gte it prescribed...when you ask your dr tell him/her loads about how you arent tolerating the pills and they may give you the liquid stuff. If not it is worth splashing out on as anemia makes you feel low and we have enough crap on without that.
Hazey- excellent news. V pleased for you all.

Thank you both, I will ring the dr tomorrow and mention it. I don't even dare take one after how ill I was, just feeling dreadful and can't wait to get some iron in me-will defo be getting spa tone then if its got enough iron in. I am so relieved you said it can make you feel low because I usually cope better than I have been. Am due 8th June so 5 weeks two days, am more scared of baby tiredness and hormones but at least I will be kept busy!

Going to SN support group tomorrow, I usually can't go because would be at work so its the first time since DD was a baby that I have been. Then I was put off as DD "only" had her medical needs (that I knew of at the time) and I felt the talk was mostly about developmental stuff but I know I will have far more in common with the mums now. Really hoping it will help with the worry. Also there is a county council SN officer attending so I am hoping to find out about summer holiday schemes. Planning on sending DD to a SN specific one to see how she gets on in case I decide to push for SN next term.

Hazey that is great! One less thing to worry about eh? Was it at the Jr too? DD was terrified of that cat that pops up and tends to stare at it constantly which makes it hard to tell if she has heard!

Hello

Trumpet Fanfare - ds stood and took 2 steps on his own!!!!!!!!

He is probably traumatised for life by the fact that we all ran around screaming with joy. He obviously heard me telling dh about your dd, FirstTimer, and didn't want to be outdone!

Used2, we had the hearing test at a small local hospital, so the puppet was a terrifying pig in Lederhosen that looked like something from the 1950s, I thought it was terrifying, but ds obviously thought it was delightful.

I have had to restrict computer usage over the last few days, due to having had a migraine, which my gp said was caused by stress. I stupidly took some Tramadol to try and get rid of it, and had a reaction to it in the middle of the night, which terrified dh, as my blood pressure went really low, making me dizzy and sick and completely disorientated. I am still a bit wobbly now, the dr said i also had an ear infection, which is affecting my balance, and nystagmus in my eyes (caused by the Tramadol), meaning I get nauseous when i read - joy!

Hazey!!!!!!!!!!! Wow!!!!!!!!! That's so brilliant. Big grins here for your gorgeous and clever boy!!!!! I'm a bit pleased for you. Can you tell?

hazey - BRILLIANT!!!!!!!! How incredible is that??!!!!!

I will hvae to tell my H about it in front of our girl - spur her on...so so pleased for some good news!

Hazey, that's so fantastic. .

Hazey, just wanted to add something as I think your DS is a similar to age to the age that my DS1 was when he started walking, he was just 23 months. I know all are v different but thought you might fibd it interesting to know that now at 3.5 he can walk and walk and walk!

He doesn't run yet but can climb in a low climbing frame and slide set and slide down on his own safely. He loves using a mini trampoline and can now jump without holding hands. He still has an unsteady walking style but trips much less frequently. He has to over learn every new gross motor skill but he always gets there in the end. He lives going for long walks and has a tantrum when he has to come home!

Hazey that is amazing well done DS! Not so great with the tramadol reaction though poor you. I love a bit of tramadol when not pregnant! Am actually on codeine today and anti biotics die to a tooth abcess- feel very guilty but apparently its ok with the baby and not much choice as it was agony this morning.

Have to say its made me more relaxed than usual though!(the codeine)

First timer. Thank you so much for the book. I've been contemplating learning about ABA and seeing if it would help my DS.

Firstimer and SallyBear please do let us know if the book is any good. I know nothing about ABA apart from it seems divide opinion on the SN board!

Hazey, I had tramadol after a recent op and hated it as it just made me fall asleep all the time and I couldn't even concentrate to read. Got used to it after about 3 weeks and it was a brilliant painkiller, then I was frightened to stop it in case the pain returned. I hate taking pills, it makes me stressed! Hope they work for you.