Being Me…

and discovering that that is quite the roller coaster ride. Wanna come along?


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Strength and Creativity Needed

Well, our daughter is going to be the death of me.  She has, in the past week, tipped over two dressers.  She is fine; the first dresser is not.  We have been using the dressers/wardrobes to keep her out of the windows and away from the blinds/curtains.  I don’t know how much longer we can do that and I have NO idea what we’re going to do after they cease working.

The dressers are now anchored as securely as we could make them in a rental.  I think this will work for a while.  But what next?  I cannot think of any good solutions.  There are window locks that can be installed but are they secure enough for a very determined child?  If we put the window locks in and move the dressers, we will have to take the curtains down or she will rip them down.  And we wouldn’t be able to close the blinds because she will break them.  So then what?  I don’t like the idea of leaving her windows open to the public, not that there is much walking traffic behind our apartment.  We’re in a rental so we can’t tint the window or frost it or anything similar.  I just don’t know.  I’m trying to think ahead but it is frustrating and worrisome.  I can feel my anxiety rising.  Sigh.  Nobody told me just how creative I would have to be to foil my daughter….

On a brighter note, we picked up our son’s glasses today.  They are round and rather cute on him.  At least that is taken care of for a while.  I also met the school psychologist who will be working with him monthly to work on some issues he’s had at school.  She is young but very nice (I’ve noticed that the older I get, the younger others look!).  I think that Alex will be in good hands.  She asked a lot of good questions and we had a good talk.

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Loneliness

I feel as if I am trapped between worlds, belonging in neither.  I have a special needs child.  My friends who don’t don’t include me any more, yet my daughter is mobile and relatively healthy despite her special needs.  I don’t feel as if I really fit in with other special needs parents.    I don’t know why I feel this way; it isn’t as if I have been asked to leave a group.  I just feel neither one nor the other.

The question is, I suppose, “Have I really accepted that she is special needs?”  I think that I have.  She is 10 years old, but more like 2 years old developmentally.  She has a rare, severe form of epilepsy so yes, her condition is life-threatening.  She is in special education and has been since she was 2 (well, it started as early intervention).

So why do I feel as if I don’t fit in with other special needs parents?  I don’t really know.  But I hate this feeling of being alone, of being isolated.  I guess in part I want my “friends” who have non-special needs kids to come back, to welcome me.  Typing that out, I have to say that I think I need better friends if they were so quick to abandon me.

At any rate, right now I feel alone and that I’m a misfit.  And that really stinks because I felt like that in high school and that was enough of that.  I didn’t think that would develop again as a parent.

lonely


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Keeping a child awake

Well, keeping a child awake is interesting.  Our 10-year-old was actually moaning by 11 pm.  She was still in a pretty good mood, but definitely liking lights out and ready for sleep.  By 11:30 she had had enough of me and pushed me off of her bed and pointed down the hall!  I gave up shortly thereafter and let her go to sleep.  I hate making her stay awake, making her uncomfortable.

Today was long.  I was tired, she was tired, my husband was tired…pretty much everyone but our son was tired.  She resisted getting up, running back to bed and pointing up to the light to indicate it should be turned off.  After three or four attempts, she finally gave up on going back to bed and started playing.

I found out after I got home that she screamed and cried through the EEG.  I hate that, I HATE it.  I know these things are necessary, and I know they didn’t hurt her, but wow… it is awful knowing your child had to go through such a miserable experience.  At any rate, the test is done; now we just have to wait to find out the results.  I don’t know that the neurologist is really expecting anything specific; S.  just hasn’t had an EEG in quite some time.  I guess we’ll find out.

I’m really looking forward to bed tonight.

Coffee can't fix this tired