A Day in the Life with a child with ACC:::Series

This is my new series of posts regarding what it’s like to raise a child with ACC.  If you are interested in being interviewed, please let me know. I want to know everything about what it’s like to raise a child with special needs/ACC.

1. How long did it take to find out what was wrong with your daughter?

Diagnosed @ 6 years even though we had been under doctors care since she was a few months old.

2. Did you notice signs that she would be special needs?

From the moment she was born I knew something wasn’t right she wouldn’t feed –she was loosing weight and wasn’t reaching her milestones.

3. Do you use charts and/or aids to help her do things independently?

No we don’t use aids.

4. What books, websites, blogs, ect helped you learn more about ACC?

 Books I read were:  The Official Patient’s Sourcebook on Agenesis of the Corpus Callosum (amazon)
Agenesis of the Corpus Callosum: The Beast Within (amazon)
The main websites were:
www.corpal.org.
www.NODCC.org
And everything on a google search I looked on every site to find out everything I could and I’m on all the facebook groups

5. What does she struggle with the most in school?

 She struggles with all aspects of academic learning.

6. Is she in a special education class at school?

She’s not in a special education class but she has a support assistant for 1 to 1 and she has a IEP

7. Is she physically impaired? 

 No she is not physically impaired.

8. About on average, how much does she sleep at night?

She sleeps about 4/5 hrs a night.

9. If she doesn’t sleep much, what does she do if she can’t? (ie, cry, want you, or just lay in bed)

Watches TV or goes on her laptop or Wii

10. What types of behavior problems do you have to deal with?

She’s hyperactive and does not listen– she doesn’t get that things are wrong and even if she is punished she’s not bothered because material things are not important to her she doesn’t get things she does are wrong or a danger and she is quite immature for her age.

11. How old was she when she was potty trained?

Potty trained just before she turned 3

12. What do you think the future holds for her?

 I’d like to think she will be able to live some sort of a normal life job/marriage/kids but  I have to be realistic and we will have to wait and see.

Postpartum Depression

I had an idea that I would have postpartum depression based on the stress that I had during pregnancy and caring for 4 kids including a baby with special needs, a house, a husband and a career and everything else that I happen to add to my plate, like finishing my degree and add to all that, 3 hours of sleep most nights and a crazy needy 2 year old who insists on needing me every single minute of her life and boom, you have a crazy mom. (And no, I’m not giving up on any of it, I enjoy staying busy during turmoil!)

I originally went on Zoloft after having Ellye but I only stayed on it for a couple weeks because it had severe side effects. I haven’t been on something for a least 3 months. I went to the doctor this afternoon and told my doctor that I just needed help. Originally, I thought I was stressed but my symptoms included; fits of rage, agitation, uncontrollable crying, general moodiness, unable to concentrate, and the list goes on. Even though there were times that I felt like it wasn’t as severe as other’s depression, I could recognize that my attitude was suffering.

Because I have a live in nanny, it’s been an eye opener to have someone from the outside see you for you. I haven’t sugar coated anything since she’s moved in. If I’ve been angry, I’d yell. If I were upset at Brian, I’d complain. But the fact is that I never used to act like this before I had Ellye. I have always been very easy going and easy to get along with. Now, I’m like an evil witch who is super negative about everything. When someone tells me something positive about Ellye’s condition, I feel like I’m conditioned to expect the worst. It’s just terrible to feel this way. I’m so glad I got help today. I’m not sure if the medicine actually is going to work but the first step is getting help.

If you are struggling with postpartum depression, please get help. It really helped me to know that I am not the only one who has gone through this. I really enjoyed learning that even celebrities have dealt with it too, as you can read here on Goop.  Have you ever had postpartum depression? What was your saving grace?

Here’s a link to a website in case you or someone you know is struggling:

http://postpartumprogress.com/ 

Here’s a list of symptoms of postpartum depression

Results from Ellye’s EEG

girls 3

Ellye finally went to her appointment for her EEG. The results indicated that she does have electronic stuff going on in her brain that would indicate that she is at risk for seizures which was the reason for the test. She hasn’t had any seizures as of yet but at least we all know how [...]

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The use of words

So because I am knew at this whole “special needs” thing, I think a lot about the words regarding her specialness. I was born in the 80′s when slang terms like idiot, moron, retarded were used as daily language. I knew those words came from people who had mental retardation but we never used those [...]

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Mommy Milestone

I was tickling Ellye yesterday and I got a smile from her! I am so excited. I haven’t seen her do it again but I keep trying. She has a bit of a cold and has been having a hard time breathing through her nose.  It was a great day though! I have been wanting her to [...]

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A New Blog Name for a New Year!

I had been thinking for a while about changing our blog name. We aren’t moving much anymore and our lives have changed since Ellye was born. It just made sense. I looked at the last 10 pages on the familyofmovers blog and realized, we hadn’t talked much about moving and pretty much everything was all [...]

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