Desperate for support - needing ideas and strategies PLEASE!

Post Reply New Topic

Hi everyone, I have 11 month old identical twins. They are my everything, so precious. My husband and I conceived them after 4 long rounds of ivf.
From about 6 months of age I noticed gradual changes in my babies as far as looking in peoples eyes and at faces and showing greater interest in objects than people. I am also concerned that neither of my babies look when spoken to or repond to their names. They don't immitate anything, very little babbling, no gestures and they stiffen and can occasionally do unusual movement with their hands.
I live in New Zealand and there is a long waiting list for the paediatricians, regardless of repeated requests to be seen sooner I have been waiting 6 months already.
I feel hopeless as I am trying so much to engage more with my babies and I feel like as if I am fighting a losing battle as I feel my babies are becoming more withdrawn and it is heart breaking to see. I cry often and feel like I need some ideas of strategies to try with my babies because I feel like I am losing valuable time.
I know that all autistic people/children are different but if anyone has any strategies or ideas please, please let me know - I am crying out for help! Thanks in advance.

Anyone????

Try to find Tanya Breen. She's currently a grad student, but planning to become the second AS expert in NZ.

Have you contacted Autism NZ? They may know of a parent group that you could attend for support and advice.

Has a paediatrician seen your babies at all since you noticed the symptoms? They're still very young, so I'm assuming that before an autism diagnosis a paediatrician needs to rule out other disorders or issues that may make your babies seem withdrawn. See for instance here (under differential diagnosis) http://emedicine.medscape.com/article/912781-differential. Hope you can get an appointment soon, and hang in there

No, we have been waiting 6 long months for the paediatrician. I am just really hoping for some practical advice in the meantime.

I know someone who is in a similar situation and what they have done is go private due to long public waiting lists. Is that a possibility for you?

Interact with your twins. Count and recite the alphabet. Talk to them and point out objects and their shapes and colours. Read them lots of stories. Play with them and describe their toys as they play with them. Talk about the toys and make up stories about them. Hug them and tickle them. If they stim, join them. There's a DVD series that's marketed in your part of the world called Bright Bubs. You can buy a couple of those DVDs to begin with. Your husband or a friend can watch the videos with you and your twins and go through the songs and exercises.

I agree with the above post.

I would just interact with them, and enjoy them, which i am sure you do.

Don't worry, thats not good for you. There still babies, so i would not think much about whether they make too little eye contact, or seem withdrawn. Just stimulate there senses, and spend lots of time with them.

Don't give up. Keep interacting with them and engaging with them. With or without a diagnosis, it can do nothing but good. The earliest help they receive, even if it's just reciting the alphabet and singing nursery rhymes to them, the better.

I understand your worries and fears. At this point, you aren't losing time, except that which you give over to this franticness. They are infants, so let them be. Some just develop slower. Maybe all of this worry is for nothing. Try to relax and just do simple things with them. Talk to them, show them toys or animals. Tickle them, hug them. Enjoy what growth they are showing and know that everything will be okay.

I think you're under the impression that there is some miracle cure that you can give your babies right now to make them other than what they are.

They may have some ASD. You do sound like you are listing some symptoms. But the treatment for autism at 11 months is similar to regular baby raising.

Make sure they are not in pain or sick - that their gut is healthy and that there's nothing in the environment that could be holding them back. The classic example is lead or Irritable Bowl Syndrome. It's not normal for babies to be constipated. If it happens more than very rarely, this is an issue that should be addressed and not just covered up with fiber supplements.

Then love them up. Play with them. Be with them. Encourage them where they are.

Remember that the speech and interaction milestones for twins are a little different. It's pretty normal that their speech is a little delayed and that they derive a lot of their social lives from each other at first. Not that you can't get it treated anyways. But it's not that unusual.

I'm having a hard time believing that NZ really doesn't have any well baby visits scheduled between 5 and 11 months. There are vaccines that are usually due in-between those ages. What part of that story aren't you telling us? What's getting in between you and seeing a pediatrician?

Ahh, vaccinations. I don't know what is is those things, but the experience of getting them was the point where I stopped trusting my parents.

Thank you everyone who posted! I appreciate your comments. There is nothing that I am not saying, there are well child visits that we have and my nurse is well aware of the situation and my concerns - the problem is that there is a VERY big waiting list for pediatricians in this country and that is why I am waiting so long. My well child provider is not qualified to access my babies.
I interact with my babies heaps, I am an early childhood teacher having 2 years off for my babies and I sing, talk to them and play games and laugh with them a lot. The biggest concerns are that they don't seem overly interested in stranges faces/eyes and although they look into mine it is brief. I have however seen a change in them in the last week in looking up when I say their names as I have been deliberately calling them when holding something that makes a sound and is very interesting for them. This is a strategy I have read on the net, along with other strategies I have been investigating.

My post was and is meerly to see if there are any further strategies I can adopt in the mean time. I am still open to any ideas. Thanks