How do you cope with the uncertainty?

[JoinTheDots]

Hi all. DD is 18 months and it seems more and more likely has autism, although I guess it could be developmental delay. Red flags are no speech and seemingly very little understanding either, no pointing to share interest, few gestures, no pretend play, and not always responding to her name. She has been slower than a stage in all areas of development but these stick out.

We have a paed appt next week but I am worried there will be a wait and see approach. I do not like uncertainty and need to be proactive in order to feel like I have s little control, but what if she just says "yes you DD has a developmental age of xxx in the following,and there are markers for autism, but lets wait and see...".

So how do you cope with the uncertainty? And do you have any general advice for the appt next week?

I am feeling a little overwhelmed about what the future might hold, and a little sad too, which makes me also feel guilty because I do love DD souch, no matter what might or might not be.

Join are you new to mn SN?
There is lots of good practical advice on here. You will need to break things down into bite sized chunks and work your way through them.
Whatever the cause of her communication delay you will probably use an aba type program to move her along.
Is she your first child?

Hi Oodles, yes first child and yes new to the SN area. I have been lurking for maybe a week or so, and might have seen ABA in a thread somewhere - will search it and find out more, thank you. Breaking it down is a good plan too.

How is her balance and co-ordination? I have found that ds's physical and social dexterity are somehow linked. Professionals don't recognise that but it seems to be quite common for a lot of people here.

Kind of hard to say on that one, she is hypermobile so not yet walking or crawling (probably won't ever crawl actually) but fine motor skills are not bad- she can stack 3 or 4 blocks and feeds herself and drinks from a cup. Myself and her dad are both clumsy though so she doesn't have much hope!

Join, I think that being proactive and not putting up with the wait-and-see approach, while exhausting and stressful for you should bring the best results for your dd.

agree about being proactive, you don't need to wait for a diagnosis to work on your DD's language/communication skills. has she had a hearing test yet, btw, that is standard for a child with suspected language delay to rule out hearing problems as a cause.

No hearing test yet - I hope that will be one of the outcomes of the appt

Hi Join, there is nothing for you to feel guilty about. We have all been there at one point in our lives. We went through the same last year. I don't want to overwhelm you but if you want, I can post a list of referrals you should expect at the appointment and also guide you on how to approach the Paed appointment. I am sure that others will be able to share as well.

Has the hypermobility been dx'ed? Does ahe have physio? If she can be taught to crawl its supposed to be good for future balance and co-ordination.

BTW Julia Moor, playing laughing learning is a book with lots of practical ideas to engage an uncommunicative child. Nursery rhymes with actions are supposedly very good for developing communication.
Do you sign with her? Makaton or sign along are dead easy to learn and can help teach her the value of gestures. Signing also helps you communicate very clearly.

Hiya. Look at the chat or mchat questionnaire as well as the NAS site. Look at dyspraxia sites and ADHD and write down all the symptoms you believe apply, with as many real life examples as you can.

Either email this to the paeds office or hand then in on the day. Be clear that you WANT a dx (if you do) as the prevalent belief is that it is kinder to make suggestions to the parent and then give them time to come to terms with it for a year or so.

If you asked why you want a dx, say it is because although provision is supposed to be based on need rather than dx, with all the cuts etc. You're worried your child will lose out on vital early intervention. You can also say that your in laws are blaming you.

In reality, early intervention in most places is shit and your child's best hope is an informed parent.

Hth

Thanks Dev, I will PM you...

Oodles, yes we have had 3 physio appts and she is dx with hypermobility, and another booked for 2 weeks time, she has improved since getting the personal exercise plan, but is still considered to have the gross motor skills of a 10 month old. Our GP made the referral to the physio and at the same time to the Paed. I do hope she will crawl and we are working on that, but she has discovered that she can get into a sitting position (her preferred state) from being on hands and knees, so tends to resist our efforts! Lots of tears when we are trying to help her / teach her, but I know it is for her own good in the long run... I have the It Takes 2 To Talk book which I have found helpful, I might look at More Than Words as well. Will check out your recommendation too. I have not done any signing with her but will also see if I can find out more about that.

Starlight - I have looked at MCHAT and have noted down the items she "fails" to list off to the Paed, I will check dyspraxia and ADHD too (had not considered those) and see what I can hit her with on Tuesday. The idea that I might need a year to get used to the idea of my DD needing some additional support seems like wasting time, I want to see action and be supported in helping her myself, from day one. I will push for this and use your suggestions for reasons if needed. I am at home with her (not currently working) so happy to put the hours in learning how to help her if the NHS cannot afford to.

Thank you for the support so far, I was feeling really alone but you guys have really helped.

Ds's physio gave us some good 'positions for play' photocopies to help ds with crawling (20 months - walks behind a walker, but not crawling), I lie him over my knee with stuff to play with over the other side, etc - I could always copy them and send them to you, if you want to pm me.

I have found the unceratainty thing very hard, the whole process started over a year ago for us, and ds has had an mri, a raft of blood tests, some genetic testing to rule out some scary things, we are now waiting on the results of a load of blood tests to test for metabolic disorders and waiting to see a geneticist.

We had a 'team around child' meeting when ds was 10 months old, which was good for working out a programme of stuff to help ds (SALT,physio,OT and special needs nursery), and what route the medical testing should take. It is good to know which professionals are on board, but the whole year has been one of making sure everyone is doing what they should, and trying to sort things out as ds's needs change, it has been a battle at times.

Doing positive things myself has helped - we swim twice a week, go to a brilliant music class, are learning makaton, go to soft play - doing things which help ds, but which he also enjoys (and which I can do with friends - to keep me sane!)

I started this thread at the beginning of it all, and it has been a good place to worry, and moan and get support over thelast year - please join in if you fancy it. I can't begin to tell you how much support I have had from the sn boards - it has been a lifesaver, there seems to always be someone to sympathise or give practical support.