Tuesday, August 18, 2009


I think I have a lot of Hmm... posts. And yes, I've blogged a lot lately as things have been 1- busy and 2- I've been making more time to just SIT... which means I have thoughts running crazy in my mind and a computer nearby so why not :)

Anyway... Emma... school... Hmm...

We're now 7 days into school. Emma did great the first two days, and then last Wed she had a 'frustrated' day. She went to bed at 6:30 that night and Thurs/Fri she had better days.

Today her aide told me she threw her glasses so hard they popped the lens out. And she'd thrown them several times yesterday. She also was sitting at circle time and rocking back and forth while sitting. She's NEVER done this. Even when she first came home, she would rock-- but on her back since she couldn't hold up her head. She still does it at night occasionally but since getting the new bed we've not noticed it nearly as often (possibly because it doesn't make noise so WE don't notice... or possibly because it doesn't make noise so SHE doesn't DO it!).

She's got a weighted lap pad. She is throwing it. I can make her a weighted vest- she does good with firm pressure... I can buy her a glasses strap, they're about $4, but she's worn glasses for over a year and she rarely throws them if ever. She usually dangles them if she takes them off and then drops them. At the moment... I put her glasses back on when she came home and I cannot find them. She had them on less than 10 minutes.

This is what I call COMMUNICATION. Problem being... aside from her being 'whiney' and obviously showing frustration... I can "treat the symptoms", but WHY is she doing it??

Is it just adjusting to the long days? Is it because she's not in the routine yet and every day is a Monday? Is she needing more sleep? Is she just not ready for school?? Or for this school environment? (I really think she's in the BEST placement we could have her... but exploring all the options...). Any other thoughts??

I know she's talking to us. I just don't know what she's saying. I hope and pray that she's going to adjust in the next few weeks to the schedule/routine and these things that have 'appeared' will in the same way 'disappear'! But I don't want to miss something while we wait it out. And right now she's "droning" on the porch. Time to go snuggle my girl...

So, yes... Hmm....


  1. I have no DS child. I know nothing at all about DS. I know hardly anything about post-institutionalized children either. But still, I'd say Emma is not happy. Maybe she is worried that she's left there? Is she at a mental age where she can understand that you are coming back at the end of the day? Can you make her days shorter? Can you be there with her for a while? Maybe there is something in the school environment that reminds her of the orphanage? It could be anything, the amount of children, a particular noise, a smell.... Maybe I'm just wrong. I just wanted to share my thoughts since Emma touches my heart.
    I hope you'll get wiser answersthan mine and that Emma gets happier really soon!

  2. I agree, is she worried you wont return? You might want to get the baby songs cd (orange one) and learn the song with her my mommy comes back. I sang it for sooo long. I sang it so many times that now I have only to say what is the rule? the rule is My mommy always comes back for me. also I would imagine it is hugely stressful for her. its a big change. does she normally do well with change? Ethan has been home for 5 years and still struggles with Mama permanency as well as just homesick missing the mama when we are apart. you have been her Mama, her friend, her caretaker, her WORLD for so long and now all that is different. sounds pretty stressful for her. oh another thought popped into my head, it is an institutional setting. not like where she was, but still similar in ways that may remind her of her unpleasant past. Let us know what you figure out. poor little precious.

  3. She's definitely talking to you. Can you do 3 days a week? Shorter days? We did Sawyer 3 days last year and he's doing fine this year with 5 days. He is definitely more tired though and breaks down more often.

    Poor Emma. She needs something and she is telling you the best way she can. Once you figure it out, you'll go...sheesh...she was saying it all the time.

    Good luck on figuring it out.


  4. Meredith,
    I would let her teacher know that I would like to come in and observe, without Emma knowing I was there. She may be trying to communicate a need and they are not "getting it". You will be able to observe what leads up to her throwing her glasses, rocking...It sounds like she is having a rough adjustment period, but with these behaviors popping up, it's clear that she is frustrated and not comfortable with the environment.

  5. She may be having a hard time adjusting to a new schedule/place. I'm sure as wonderful as the school may be, she may be picking up on the fact that it is an institutional environment. Nothing compared to her early years, but the trauma may still be brought up somehow. Or, maybe it is good old fashioned seperation anxiety. What if you could put some pictures of your family on her wheelchair tray. Also, is she stuck in the chair all day? I know she's not at home. She may need to just be able to get out of the chair and explore her environment some more to keep her interested.

    I don't know if you have much wiggle room, but can you try a shortened school day? I'm sure with a baby coming so soon homelearning is out for now.

    When Charlie started preschool we did a shortened day and fewer days a week. We have slowly built up to a full week, but I might go down to 4 days again if it seems like too much. Maybe you could build up to a full week. She is, afterall, developmentally much younger than a kindergartener. Good luck with your decision. love that she is communicating. I always say that in our house communication is a lot like playing charades.

  6. The trick is observation (either by you or a school staff person, someone sitting back OBSERVING who is not directly involved with the activity.) You need to know what happened immediately prior to the incident. This is called the Antecedent. School staff don't know her subtle signs of frustration yet, so they may not know what the antecedent IS. They might say, "There wasn't even anything happening at the moment." When in reality it could be that someone she didn't care for was close to her. Or she had something in her eye, etc. So, you have to find the antecedent and THEN you can find the solution.

  7. We are praying for you and for Emma. Hope you figure it all out soon!

  8. I have a special needs child!He does not have Ds. what i have noticed is the first month of school is always tough and he is always Frutrated s his routine from summer break to school has changed.I would try setting in with her for a bit.Our sons school is 2 blocks from our home so i could easity pop in and check on him.Does she have something small she likes you could send with her?We send a blanket with our son and that seems to calm him alot.Landen used to rock back and forth when he first came home and has not done it for a long time.The first 4 weeks he always seems to rock.After he is well into the 4 weeks all the behaviors stop.Emma is a sweet heart and maybe she just needs something from home to let her know it will be ok.

  9. I don't have any words of advice or help. I am sorry! I will be praying it works itself out soon and we can figure out what Emma is acting out. She's trying to talk. Poor girl! :(

  10. Hello friend,

    Oh goodness, my heart aches for you, and Emma. I can only imagine how your mommy heart is breaking.

    I can tell you that we experienced something very similar with Haven. She is 8, completely non-verbal, and developmentally around an 18 month level. Extremely delayed in all areas of her life.
    I homeschool my kids, but we were advised to try public school for her to access the therapy. We took the advice and tried. She hated it! Being unable to communicate with us, she regressed. She started pooping in her pants (to the point where we had to put diapers on her), rocking back and forth--and was just miserable. It was her way of telling us 'this is too much for me'.

    We brought her home after trying to make it work for two weeks. It took her about 6 weeks to get back to the point she was at before she went to school. It was just too overwhelming for her.

    If I had to do it all over again, I would have started so gradually, just letting her ease into it. The problem we have now is that at the mention of the word 'school', she starts having potty accidents...she gets anxious.

    My thoughts would be to try and let Emma adjust slowly--I absolutely agree with the other ladies. Let her go part-time for a few weeks and gradually increase the time. It may help.

    I know this is a tough road--I have been there. Know that I am praying and trusting God would give you and your hubby divine wisdom as you make decisions for your sweet Emma.

  11. My guess is she is overwhelmed and over stimulated. Can you cut back on her attendance hours, or go every other day and build up to the hours the state requires? (if there are such requirements).

    Also- are any other kids wearing glasses? If not, she may notice the difference- the difference being her with glasses- and she doesn't like that! At home, Micah wears glasses so she's not alone there. So these may be 2 separate problems!