Moms of children with Autism *small update in OP

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Moms of children with Autism *small update in OP

Postby Cally » Fri Sep 11, 2009 6:41 pm

My dd Órlaith is 22mths old, she is on the waiting list for an assessment but I would really appreciate some opinions. I can remember when Órlaith was very small when I was feeding her she avoided eye contact it seemed to make her uncomfortable. I thought it was strange but she seemed fine in every other way. By December 08 she was saying alot of words including Mama, Dada, baba, bye bye, look, whats that, hiya. From January 09 we started to notice a difference in her, she lost all of her words except Mama, she still says that but not to call me KWIM. She doesnt respond to her name and she has limited eye contact. She is the most easy going child that I have ever met, she never cries or throws a tantrum, if she wants something she will try to get it herself, if she cant she just walks away.

Some of her behaviours that worry me are, She looks at everything close up. She will stand againt the wall with her nose pressed against it and stay like that for a long time, she does the same thing on the floor.

She loves books but she doesnt seem to look at the whole picture, she picks a section of the picture and really studies it

She has a yellow ball that she carries around all of the time (it goes to bed with her too), she runs up and down with it held up to her eye. She loves pens or anything shaped like a pen she will hold them up to her face as well and run up and down.

She can build her blocks but she will usually only stack the red ones, She also loves her ballpit but most of the time when she is in there she will throw all of the red balls out.

She loves stacking things in general she has tried to stack shoes on top of each other and even pasta.

She loves hugs and has no problem giving them but she prefers to be standing on the floor for them, she doesnt like to be picked up and hugged

She is fascinated by the trees, she would watch the leaves blowing for ages, same with ripples on water. She also loves wind blowing on her face or rain falling on her face, when water is spraying on her face she looks euphoric, in a way that scares me but amazes me as well. I hope this whole thing hasnt been totally incoherent. Im trying to make sense of my thoughts tia

*small update*

Órlaith had her hearing test yesterday, unfortunately the audiologist was only able to complete 1 of 3 tests but he said that he thinks that her hearing is fine. I had to play with her in a room while he sent sounds through speakers that were placed around the room, she did turn to look in the direction of the sounds so that was good. For the other two tests he had to put ear buds in her ears but of course she kept pulling them out, so he said the only way he could complete it would be to sedate her. I really think I am going to refuse that, Im not comfortable with her being sedated at all especially since he doesnt think there is a problem with her hearing but if anyone thinks Im wrong and that the 1st test wasnt enough to draw a conclusion please chime in and let me know tia
Last edited by Cally on Fri Oct 02, 2009 5:40 am, edited 1 time in total.
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Postby PixieB » Fri Sep 11, 2009 7:11 pm

A majority of those mannerisms sound like typical toddler sensory exploration and wonder at the world.

Autism is a tricky one to diagnose early. It becomes more apparent around age 3 when they're being noticably less social than other children around them, reliably not engaging with others, avoiding eye contact, smaller vocab. Autism is tricky to diagnose at the best of times.

Children with autism tend to need very strict patterns, things are done in a very specific order and have a very specific place where they belong. Breaking that order is begging for a tantrum because you've broken how they make sense of the world. They usually have trouble filtering out sensory information, and are easily overstimulated, sometimes releasing that overstimulation through 'stimming' (a single repetitive obsessive motion or toy)

Give it a bit more time yet. Keep an eye on her. Watch how she interacts with others. If you're concerned it is worth talking to a doctor, write down what you've observed as a framework for assisting with diagnosis or referral.

It's not sounding like autism to me yet, but I'm not a professional. Because autism is about mis-wiring in the brain it's very hard to diagnose as it's different in every person.
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Postby Cally » Fri Sep 11, 2009 7:52 pm

Hi pixieb thanks so much for the response, Órlaith never has tantrums and I can honestly say she doesnt have a routine. I stay alot of the time with my sisters and she will go into any of their houses and go to sleep. She doesnt seem to care as long as she has her blanket and paci, she will sleep anywhere
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Postby PixieB » Sun Sep 13, 2009 2:15 am

I'd strongly doubt autism then :)

It's also really normal for toddlers to regress or ditch words they used to use regularly. This is especially true if there's any significant change or stress in her life currently (new siblings, moving house, parent losing job, illness etc etc).

There are other potential conditions, but she's sounding fairly normal. I forget the major indicators for Sensory Integration Disorder but for some reason it's sticking in my head. You could google it if you wanted, but you're probably better off waiting for a proper assessment (Dr Google is a sure fire way to stress yourself out ;) )
Talia Grace: born Friday 13th of July, 2007, at 27w4d gestation, 700g/1.5lbs. Nursed for 4 years
and Violet Joy: born Thursday 19th, VBAC waterbirth, 39w2d, 3.35kg/7lbs 6oz, still a booby monster, just shared it with her big sister for 18 months.
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Postby Cally » Sun Sep 13, 2009 3:19 am

Hi Pixie, around the same time that we noticed a change in Ó I split from dh (we are patching things up now)and we moved to another county. I guess that would be a significant change. I did think at 1st that that was the problem but then I wasnt so sure because she didnt seem upset in any other way, she was still the same placid, easy going little girl.

I will google Sensory Integation Disorder thanks :)
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Postby PixieB » Sun Sep 13, 2009 4:20 am

Toddlers are quirky in that they may seem utterly normal in almost everything when dealing with stresses, but regress in one or two areas. The relationship stress seems the most likely trigger and cause. Give her a bit of time for things to settle down and her to feel familiar and secure in her environment and she'll pick up her development again.

More and more I'm seeing that children who aren't emotionally secure don't progress in their development (or only progress slowly). They need a little bit of stress to challenge themselves, but it doesn't take too much to over-load the system.
Every other area of development (intellectual, social, physical, language) having a delay or freeze or disability in it will slightly hinder the other areas of development sometimes, but if a child doesn't feel safe then everything else gets put on hold. It's a survival mechanism, primarily for brain development.

Sorry, I seem to be rambling :? It's good that things are settling down for you guys again. The way she studies her environment actually sounds rather beautiful, use her as a teacher for you to re-look at your world through toddler eyes, where it's all new and exciting. It can give you a lot of joy and ease the frustration at the toddler-dawdle. :)
Talia Grace: born Friday 13th of July, 2007, at 27w4d gestation, 700g/1.5lbs. Nursed for 4 years
and Violet Joy: born Thursday 19th, VBAC waterbirth, 39w2d, 3.35kg/7lbs 6oz, still a booby monster, just shared it with her big sister for 18 months.
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Postby Cally » Sun Sep 13, 2009 5:57 am

Thanks Pixie, I agree the way she views her environment is beautiful, I have never seen a child look at things the way she does, its fascinating :)

I googled Sensory Integration disorder and I found that I could apply some of the things on the list to Ó but I could also apply some of them to my other kids and my nieces and nephews, so I think I will just try to stop panicing and wait for her assessment. Easier said than done though lol.
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Postby laurens21 » Mon Sep 14, 2009 11:09 am

I have 2 kiddos on the Autism spectrum and would be happy to answer any questions you have.
I would have to say go with your gut instinct, if you think something is wrong then it very well could be. I knew with both my boys and still got the run around from many Dr.s and friends, before getting an official diagnosis. You know you're daughter and if you have other children you know what is normal toddler behaviour and what is not. I'm not disagreeing with the above posters in any way, it very well could be normal toddler behaviour.
The best thing you can do is get Early intervention if there is a problem and believe me Autism is a hard diagnosis to hear for your child, but not the end of the world. There are so many therapies and help for these special kids. And they can make HUGE strides with help.
My oldest son also lost words, eye contact and would not answer to his name anymore. He was very loving and gentle. He would carry certain toys around with him all of the time. My younger son with ASD was very different. Not alot of speech at 19 months and social, loving etc. NO problem with eye contact, but one day I caught him looking at his toy truck funny and I knew. So all children on the spectrum can have very different symptoms/behaviours. My youngest son is 4 now and you can't really tell he is on the spectum. I also have 2 normal functioning boys.
I hope this helps. And I would be happy to answer any questions you might have. Take care.
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Postby my2girls » Mon Sep 14, 2009 8:09 pm

I don't have any personal experience with autism in my kids, but I have several friends and a cousin with autism. The no eye contact seems to be a common denominator. One friend said her son stopped using words around 15 months, and things progressively got worse, and became completely nonverbal. She was recovering from a bad car accident at the time, and it wasn't til she recovered that she realized how much he had changed. She says in retrospect, she always felt he was a little different, even as a baby.

From what I understand, the earlier a child with autism is diagnosed, the better the outcome, for some. And I am a firm believer in trusting your gut, no matter what doctors tell you. No one knows your child like you do, right? The previous poster would be a great resource too. GL!
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Postby Cally » Tue Sep 15, 2009 4:58 am

Lauren and my2girls, thank you for the replies, honestly my gut tells me that there is something wrong, maybe its not autism but I dont know. She is nothing like any other child I have ever met. Its not even that sometimes her behaviour seems off, its all day long, in everything she does. She is on the waiting list for an assessment with the Early Intervention Centre here. They have a special needs preschool attached and they will have a place for her 2 days a week at the end of October, which will push her up the list thankfully because the waiting list here is ridiculously long.

Another thing that I think is strange is that I often find Órlaith smiling and by that I mean beaming at nothing in particular also I often hear her laughing in her cot but there is nothing in there with her except a teddy. I walked into her room once when she was laughing and she just stopped and looked at me then when I walked out and closed her door she started roaring laughing again. It kind of freaked me out lol
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Postby laurens21 » Tue Sep 15, 2009 12:48 pm

I'm glad you are going to have her evaluated. Then you will feel so much better having an answer. And good for you for taking charge and getting things moving (even if there is no problem).
Not to disagree with the above poster, while no eye contact can be a symptom, there are tons of kids on the Autism Spectrum who have perfect eye contact. My youngest son was one of them. Only sign he had was looking at his truck funny one day ( and I just knew). My oldest had more signs and is also more severe. That is why it can be difficult to get a good diagnosis in some children. And that is the hard part about Autism, it can present is SO many different ways. In my oldest son't special ed. class there are 6 kiddos with Autism and they are all so different, but so cute!
My oldest son would laugh like that and still does. And there can be no reason. It used to freak us out, too. But now he will get the giggles so bad that we can't help but laugh with him.
Again, not disagreeing with the previous poster. Everyone has given really good advice. I just think there is nothing better for these kids than early intervention and with it they make HUGE gains. It's better to get an evaluation and it be nothing, than wait. You will feel so much better.
Hoping you get good news. :D
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Postby Cally » Tue Sep 15, 2009 2:31 pm

Thank you, I will keep you all posted :)
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Postby dixiechicken » Thu Sep 17, 2009 6:40 pm

I remember you mentioning something about this awhile back, so I know you've been stressing over this for awhile. You've already gotten a lot of helpful information, and from what you wrote, I'm leaning towards autism. However, the autism spectrum is HUGE!!!!! I am a special ed teacher and have had quite a few children with autism, and every single one of them has been different! There are so many books and resources on autism, but there just isn't any cookie cutter diagnosis or treatment. What works for one kiddo will throw another kiddo into a tantrum.

I just want to say though, when I was reading your post, I had a huge smile on my face. Your descriptions of Orlaith's behavior just sound beautiful to me! I can just picture her smiling up at the tree as the leaves fall. Children with autism have such an innocence about them! :hb: I truly hope that Orlaith just has some sensory issues that she needs to learn to work with, but whatever the outcome, you have a very beautiful and special little girl! I say this all the time, but while the the "special needs club" isn't a club people really want to become a member of, my life has changed and improved so much because of Wade's special needs. I am now thankful to be a full fledged member! :D
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Postby Cally » Fri Sep 18, 2009 11:37 am

Dixiechicken- Thank you so much that was lovely. I think the thought of Ó having autism scares me alot but when it comes down to it I just want her to have a good life and be happy. I wouldnt change her personality for the world :) "hugs"
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Postby dixiechicken » Sat Sep 26, 2009 6:54 pm

Cally wrote:Dixiechicken- Thank you so much that was lovely. I think the thought of Ó having autism scares me alot but when it comes down to it I just want her to have a good life and be happy. I wouldnt change her personality for the world :) "hugs"


The unknown is a very scary thing. My DH often reminds me that Wade doesn't know he is different--at this point anyway. It's the adults that struggle so much with it.

Also, do you remember me commenting about your siggy picture quite awhile back? I think I said something about Orlaith looking like she knew something the rest of us didn't. Kinda like an old soul. Just the look in her eyes. She's beautiful! Keep us posted on your journey with the doctors! I don't know everything, but I do have experience in the field if you have any questions. Just PM me! :D
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