Lots of Things Going On… » Teeny Manolo

Lots of Things Going On…

By Glinda

…here at Casa Glinda.

Let me throw a pity party for myself for a second,  OK?

I promise there will be goody bags.

After months of speech therapy that did not alleviate the bulk of her behavioral/developmental delays, yesterday we took our daughter to undergo a three hour battery of tests given by a multidisciplinary team of experts.  This was done basically to determine if she needs further, intensive behavioral therapy and if she is going to be clinically diagnosed as being on the autistic spectrum.

To say that I have been getting harassed by my immediate family for doing this is somewhat of an understatement. I have been accused of “wanting” something to be wrong with her to “having her labelled for life.”

Well Christ, I would say that when your three year old maxes out at three word sentences and still has a very limited vocabulary, as well as other behavioral issues, then it is high freaking time she get some intervention.    I resisted the testing battery for a few months because I wanted to see how much she would improve after six months of speech therapy, if her behaviors were the result of a bright mind frustrated by lack of communication skills.  And in some regards, they are, but my husband and I believe there are deeper issues that need to be addressed.

You know, because we are the ones living with her, not the people who see her for a maximum of a few hours a month.

Apparently that makes me a bad mother.

So now we wait a week to meet with the team and they will deliver their findings.

To say that I am stressed is also somewhat of an understatement.

Also, that whole remodeling thing and moving to another city?

Yeah well, that went kerplooie, and to be honest it was my decision to halt everything.  But that was because for 10 entire months, I was blockaded and stalled out and literally lied to.

So I took myself off the roller coaster.

In one sense it is a relief and I don’t regret the decision, but in another sense making that decision is taking me down a specific road that other people aren’t going to like.

Too bad.

I guess the moral of this post is that I have learned that life is too short to keep people around that are full of negativity and to keep on doing what you think is right.

Here is your goody bag, full of self-righteousness and resolve.  Trust me, it’s better than a Twix any day.

12 Responses to “Lots of Things Going On…”

  1. Awesomemom Says:

    ((hugs)) I hope you get the answers you need to move forward.

  2. Glinda Says:

    Thanks babe! Hugs right back atcha!

  3. marvel Says:

    Oh, Glinda! Thoughts and prayers with you and your family! I admire your courage in taking your daughter in for testing for a possible diagnosis that NO ONE wants to hear!I know you know this, but you are not a bad mother!

    Sorry to hear about the house. I hope it was contractors lying to you, and not family members!

  4. Glinda Says:

    Thanks marvel, I appreciate your support.

    I’m on tenterhooks waiting for the results meeting next week, because she doesn’t meet some of the more “classic” autism symptoms, yet there is obviously something going on.

    Also, the person doing all the stuff to me was my own mom.

    That was what prompted me to just exit the crazy under my own auspices.

  5. KESW Says:

    Good for you getting her tested! I know it is hard, but as the sibling of a man with long-undiagnosed ASD (he was diagnosed at 16) that early diagnosis can make SUCH a huge difference in helping them achieve all of their potential. I know that other families make decisions against “labeling” and I’m sure its a very personal choice, but I think that the concept is bunk. Wouldn’t one WANT their child to be assured of who they are and how they are different, rather than always wondering “what’s wrong with me??”

  6. Glinda Says:

    I totally agree with you, KESW. From everything I have read and spoken to people about, the earlier you can get therapy for them, the better. In fact, we are getting it early enough that by the time she hits elementary age, she should be fairly undistinguishable from her peers.

  7. Violet in Twilight Says:

    I had same trouble with my son. There was a lot of resistance to “labelling”. It is stressful to wait for the results. Hang in there.

    But after the test results came in, it was a relief to know what is and what isn’t wrong with him.

    I take that bit of certainty than wondering if something is really wrong and waiting too late to have it addressed.

  8. Glinda Says:

    I agree with you completely that it is better to know exactly what you are dealing with than sitting there just guessing.

    Hugs to you and your boy!

  9. La Petite Acadienne Says:

    Labeling, schmabeling. You’d be doing her no good whatsoever by sticking your head in the sand and pretending nothing’s wrong. If she had poor vision, you’d take her to get tested and would get glasses for her, and not give a damn about labeling her “nearsighted”, right?

    There is a kid at my son’s daycare who, to anybody with eyes in their head, has some obvious developmental/behavioural issues. He’s 3 1/2, and has a vocab of about 12 words, no impulse control, walks on his tiptoes, etc. One of the other mothers, whose child is high-functioning autistic, said when observing him, “Well THAT looks familiar!” But the mother of this boy has her head in the sand. His last daycare provider suggested testing, and she responded by hauling him out of that daycare. So here’s this kid who could obviously benefit greatly from some early intervention therapy, but he’s not getting the help he needs because his mother is in denial.

    So who’s being the better parent?

    Hang in there, Glinda. It’s better to take the bull by the horns and find out what’s wrong and then get to work DEALING with it, rather than putting it off forever and living with that gnawing feeling in your gut.

  10. Glinda Says:

    Yeah, I think for many of my relatives the problem is that she is definitely a high functioning autistic if she is, but they have a very fixed definition of what “autistic” is, and it isn’t one that is as high functioning as her.

    The thing that is throwing everyone for a loop is that she is VERY social, almost too social, if you ask me. So I think if you were to take that trait away, nobody would have to think too hard about it.

    But she is, and I have done a lot of research into how autistic girls present differently from boys, and I don’t know how much of that is going on here.

    Thanks for your support!

  11. pjs Says:

    Just happened to drop by today as my kids are older, so not a regular reader, but your post was familiar to me. I do have a son on the spectrum, diagnosed in 2nd grade. He went from private speech therapy to occupational therapy to the Big Four Hour Day of Tests where he got his label and then we began the IEP at school process. I wish he had been diagnosed sooner, but it involved finally changing from an unhelpful pediatrician to accomplish this. Family, even attempting to be kind family, sometimes Does Not Understand. “You just haven’t been around children enough” sniffed one, right before I very uncharacteristically hung up the phone. If there is something there, they will get it soon enough. If there isn’t, you are wisely ruling it out, also a good thing. As hard as it is, try to let their advice go, like water off a duck’s back. You are doing the right thing by your daughter, and best to your family on your journey. Also, if there is something there, your hopes and dreams for your daughter still hold. Remember that.

  12. Glinda Says:

    Thank you, pjs, for your words of wisdom and encouragement.

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