- Pregnancy
- Baby & Toddler
- Parents
- Getting Pregnant
- Baby Names
- Product Reviews
-
Registry
- Community
-
More
Want a personalized experience?
Download the free app
Special Needs
rslhmg
member
Intro
rslhmg
member
Apologies in advance if I'm rambling a little in our intro, I'm bouncing between relieved, concerned, and just not sure what to feel. DD is a preemie now 17 months actual, 15 months adjusted, and has been showing signs that had us concerned about autism. She has been having violent outbursts for no reason that we can figure out, she bangs her head without regard to hurting herself, won't sleep for more than 3 hours at a time, and has been increasingly antisocial. We do see a developmental specialist due to her prematurity and had an appointment today that we were able to get into our concerns during. The good news is that even though she is showing grey area signs, she has good eye contact and he felt comfortable ruling out autism. He initially felt it was either a mood or sensory disorder and than DD had a very mild (compared to what we deal with multiple times daily) meltdown. He said he thinks its definitely a combination of a mood and sensory disorder and is sending us to a behavioral specialist for a more in depth eval. He let us know we most likely will not get an actual diagnosis until she's around 3 because of development that happens between now and then. but we definitely need to get her into some kind of therapies and this is the way to go.
I had a gut feeling that something was wrong, and I am relieved to know that there is an issue and we are getting on track to making it at least manageable. At the same time though, I keep wondering if we did something wrong to cause it, and it doesn't help with the emotional roller coaster we have been on for the last 9 months when everything started. I was almost in tears in the developmental specialists office today when he was asking about DD being affectionate. She will go sometimes up to a week without allowing us to show her any affection without her physically lashing out. She can't stand being at family functions, when we visited dh's moms for thanksgiving, DD hid in dhs mother's bedroom and became violent at any attempt to socialize her. Sje wouldn't allow us to touch her other than to put her to bed without becoming violent for 3 days after. He asked about other things that we thought were odd, but weren't sure about them being of actual concern. She's highly organized for her age, she will spend hours sorting her toy boxes and the wrong toy in the wrong box results in a meltdown. We have to watch her to see when she's full so we can take her plate away, otherwise she will continue to eat. He said that was a self regulation issue. I know there are other things I'm not covering that were brought up, but my mind is a bit frazzled at the moment. I mainly wanted to intro and share what we know so far, which really isn't much, and hopefully hear from other parents who have been through similar issues.
I had a gut feeling that something was wrong, and I am relieved to know that there is an issue and we are getting on track to making it at least manageable. At the same time though, I keep wondering if we did something wrong to cause it, and it doesn't help with the emotional roller coaster we have been on for the last 9 months when everything started. I was almost in tears in the developmental specialists office today when he was asking about DD being affectionate. She will go sometimes up to a week without allowing us to show her any affection without her physically lashing out. She can't stand being at family functions, when we visited dh's moms for thanksgiving, DD hid in dhs mother's bedroom and became violent at any attempt to socialize her. Sje wouldn't allow us to touch her other than to put her to bed without becoming violent for 3 days after. He asked about other things that we thought were odd, but weren't sure about them being of actual concern. She's highly organized for her age, she will spend hours sorting her toy boxes and the wrong toy in the wrong box results in a meltdown. We have to watch her to see when she's full so we can take her plate away, otherwise she will continue to eat. He said that was a self regulation issue. I know there are other things I'm not covering that were brought up, but my mind is a bit frazzled at the moment. I mainly wanted to intro and share what we know so far, which really isn't much, and hopefully hear from other parents who have been through similar issues.
Warning
No formatter is installed for the format bbhtml
This discussion has been closed.
Re: Intro
We are being referred to a group practice of psychologists/psychiatrists/Certified Behavioral analysts. I have been looking into them online and asking around in my family about them. My Step Father actually took my step brother to the same practice 18 years ago and they diagnosed my step brother with aspergers, my MIL took my BIL to the same place when he was diagnosed with autism as well. From the information I can find on my own they are the top ranked in our state and pretty highly ranked for the nation, and my aunt who is a behavioral nurse actually recommended we get in with them prior to me telling her that's where we were being referred to, so I'm feeling pretty confidant that we are being sent to the best available short of going out of state.
Do you have a strong family hx of mental illness that would cause him to think along these lines?
We do have a pretty extensive background of mood disorders in both my side and DH's side. Several family members diagnosed with bipolar disorder or depression, and a handful with diagnosed OCD. There are also several suspected mental illnesses, but no diagnosis due to refusals to get evaluated, I didn't mention those at her appointment since I'm not sure it would be considered relevant without an actual diagnosis. DD had a flat mood the entire time we were in the office aside from her meltdown, and between that and some of her behaviors we were discussing, prompted questioning about mood disorders in the family and brought up the possibility of her having a mood disorder.
Does she bristle at all engagement? Or is she the sort of LO who doesn't like to be confined to a lap. Sometimes kids prefer to play with a parent than be cuddled.
She will react badly to all affection not on her terms. We have to let her come to us when she wants affection or else she lashes out. We get a rare day or two where she will let us love on her, but those are so few and far between. It really doesn't matter if we are trying to sit her in our lap or if we are getting in the floor and playing with her. The only real guarantee of any kind of affection from her are days we visit her drs. She will get clingy in any clinical setting, I feel kind of bad for saying it, but I get excited about going to her appointments because I know she's going to let me hold her and love on her while we are there. Other than that, the only person she is consistently affectionate with is the BIL with autism.
How would she do if people came to visit at your place instead?
At home she will vary between hiding from other people in her room, ours if we forget to close the door, and being clingy. It has a feel of her wanting to socialize and be involved, but getting easily overwhelmed. if that makes sense. MIL will babysit for us from time to time and has told us almost every time that DD would be fine for a short while and then need to hide even on days when it was just their normal household members there. (She cares for my BIL with autism, as well as her mother, and SIL is living there while she finishes college). When the behavior started initially, I thought she might be a tad shy, I was extremely shy as a child, but we started noticing the behavior around people she knows well and sees regularly.
We found out yesterday, short of being referred somewhere else, it's going to be awhile before we can get in for her to be evaluated. The office we're being referred to has a really long wait list (almost a yr), and since the only way to be seen by them is with a referral, there's no moving up the list because of being referred. I'm a little frustrated since that means we won't have any real idea what's going on with her for awhile, but I'm trying to keep in mind she will be closer to 3 and that could mean a clearer diagnosis. I did contact our EI program, told them what was going on over the phone, but they told me they only deal with children experiencing developmental delays, which she isn't. I can have them come and evaluate her, but we haven't seen any delays, her regular pedi hasn't seen any. and her development dr hasn't either, so I don't think that would be helpful to us since they won't provide any assistance without a delay. I contacted her developmental specialists office to find out if there was any other avenues available to us, but I haven't heard back yet, and I'm honestly not sure what else to do for now.
Flat affect is the wording he used, I have been trying to remeber exactly what he called it since we left his office monday! The only thing I could remember for sure was he was referencing her lack of expression and mood change. She stays like that majority of the time. We can tell when she's happy or content usually, or at least we like to think we can, but we get asked why she's so unhappy frequently because she rarely smiles or laughs. The only display of emotion we get on a regular basis is her meltdowns.