Tuesday, March 13, 2012

She Said It Was "Vital"


Welcome to the March 2012 Carnival of Natural Parenting: Parenting With Special Needs


This post was written for inclusion in the monthly Carnival of Natural Parenting hosted by Hobo Mama and Code Name: Mama. This month our participants have shared how we parent despite and because of challenges thrown our way. Please read to the end to find a list of links to the other carnival participants.





Sweets is almost 3 years old now. She has been enrolled in state early intervention since just after she turned 1, and now she is aging out of that program. The next step is an IEP (individualized education program) with the school system.

In preparation for our first IEP meeting, Sweets has been tested for pretty much everything, even though our main concern with her has been her speech and language delay. She has been getting speech therapy twice per week since 18 months, but she used to also get physical therapy (for gross motor delay) and developmental therapy (for cognitive delay). We dropped the other therapies last year, mostly for financial reasons, but also because it seemed like she had improved so much in the other areas that she probably didn’t really need much more therapy there anyway. We felt like speech was her obvious issue, and we should focus on that. If therapy had continued to be free (DT) or cheap (PT), we probably would have just continued, but when the state completely changed the financial structure so that we would have to 100% self-pay for all therapies, we decided she probably didn’t really need all those therapies anymore anyway and we could just focus on speech.

The current round of evaluations has shown that not to be the case after all.

I was surprised that her scores in PT were at the 4th percentile – the same as they were at 13 months when we started early intervention. Once your kid can walk and get around pretty well, I guess you forget that there is more to gross motor than just walking. I was more surprised that her cognitive scores were also at the 4th percentile. But she can do puzzles now! And find hidden objects! Ironically, she scored higher in language ability, at 8th percentile, than she did in PT or cognitive, and that is the area we had been most concerned about!

It is obvious that she is gaining skills, not losing them, but it is harder to see whether she is actually “catching up” or not. To me, it feels like she is doing so many new things, and she is! But that’s not the same thing as catching up. It doesn’t mean that she no longer needs therapy. It took me by surprise to see that she is still at the same percentile as she was two years ago.

So many people have told me that “she’s probably just a ‘late bloomer’” and not to worry, which may have led to some additional complacency. People love to tell you about someone they know who didn’t say a word until they were X age and then suddenly started talking in complete sentences. I’m sure they are just trying to give comfort and reassurance that everything is okay, that your child is “normal”. But that can make you feel like it’s not that important to get therapy, at least not yet. Or that you are overreacting if you do get therapy so soon. Maybe you should just wait and see.

Others seemed to blame her delays on me:
“She doesn’t walk because you wear her too much.”
“You are too easy on her – if you just made her work harder she would do it.”
“She doesn’t talk because you taught her to sign.”
Basically, she doesn’t need therapy, she just needs me to parent differently. Gee, thanks.

It is an odd contrast to the “early intervention is so important” proclamation that you often hear in the disability community. But when your child doesn’t have any diagnosis, just an undiagnosed developmental delay, it is hard to know if that still applies to you. Doctors have tested Sweets for all sorts of diagnoses, but all of the tests have all come back negative, leaving me to perpetually wonder if she really IS “just a late bloomer” and would catch up in her own time. Or, if I have somehow contributed to her delays.

Sweets’ cognitive evaluation report says “it is important to consider that intellectual abilities are less stable and predictive at this young age.” Which means that just because her IQ is 73 now, doesn’t mean that is necessarily predictive for what it will be in the future. She could still “catch up”. The report goes on to say that “it is vital that [she] receive appropriate intervention to address her language and cognitive delays so that she can improve her skills and intellectual disability can be prevented.” Basically, if she gets therapy now, then it is possible that she will improve her cognitive abilities with respect to her age as she gets older. And if she doesn’t, it is possible that in the future she could be classified with “intellectual disability”, previously known as mental retardation. The psychologist is not equivocal in her recommendation – early intervention at this time is vital.

I feel guilty that I voluntarily stopped her other therapies, because it looks like she probably still needed them. We lost about 9 months of therapy there. We will find out this month whether the school system is going to provide these therapies to Sweets through her IEP or not. But even if the school does not provide them, we will be sure to get private therapy for her anyway. At this point, I want to give her all the early intervention that I can get her.



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13 comments:

  1. I don't know you personally, but I am going to bet you are doing the best you can! At least all I got from your post was loads of love for your daughter. You might find a post that I wrote a few posts ago on "Guilt" interesting. I am a part of this Carnival, too. Julie at "What I Would Tell You."
    www.whatiwouldtellyou.com

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  2. Do not feel guilty at all! I have dropped therapies too for the mere reason that I was overwhelmed and needed a break. You are doing the best that you can and that is what really matters. does she know she is loved? Does she know her new accomplishments are celebrated? Does she know you are there for her regardless of her abilities? Because that is what really matters!

    Now in preparation for her IEP, I really recommend the book "Wright's Law" from Emotions to Advocacy" it is a must have for all of us!

    Stopping by from the carnival, so nice to meet you :) I am following you now.

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  3. But that can make you feel like it’s not that important to get therapy, at least not yet. Or that you are overreacting if you do get therapy so soon. Maybe you should just wait and see.

    I'm so glad this isn't just us. When I mentioned on Facebook that my son's well-child check-up confirmed our concerns about his speech, and that they had recommended we have him tested through our school system, most comments were friends trying to assure me that oh, they weren't talking at three either. He would probably just pick it up soon.

    It's well-meaning, I think, but also to alleviate the other person's fear. It's hard to have a friend whose child has developmental delays or disabilities, and it forces everyone around them to reconsider what they assume about 'normal'.

    Good luck to you and your daughter with her therapy!

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  4. One of my very closest friends' daughter has been in various therapies since our kids were only months old. I've learned so much from her and her daughter and you're right... there's so much more to gross motor skills than walking and far too often we don't realize it until it impacts us personally. Good luck!

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  5. I cannot believe that people would say those things to a parent, some people simply have no filter. Please do not feel guilty for taking her out of those therapies - did anyone tell you they were *vital* 9 months ago? Something tells me no. You are doing everything that you can, I know you are an involved, amazing mama. Much love to you!

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  6. I hate when people tell me that so and so didn't talk until they were three or five or whatever and are JUST FINE. Bah. Normally, those kids DID talk but they weren't much of a talker, kwim? I'm working on being nice when people say that but usally I am not! LOL

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  7. We're going through the IEP process with our speech-delayed, almost-three-year-old little boy, as well. The testing process is so brutal. Hearing how far behind Joe is always seems to send me spiraling into worry and guilt. I know it's better to do the testing and get the information - and therapy - you need. But, it kicks my rear end every time.

    I too have had a hard time negotiating the many "reassuring" comments we receive about Joe's delays; I know people mean well, but at the same time, I'm not going to say "oh, he's just a late bloomer" and forget about doing speech therapy! So I just smile vaguely and say, "yes, we've heard lots of reassuring stories like that, and of course, we hope Joe will be an example of that, but in the meantime, he really enjoys speech therapy."

    Good luck with the IEP process! I'm happy to have found your blog!

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  8. I found you through the carnival, and a lot of this post echos things we went through with our delayed speaker. I always tell people "probably just a late bloomer, but go ahead and sign up for speech/whatever therapy." Because if your kid does need help, why wait? Just don't panic while signing up for stuff, right?

    Our experience with our delayed boy is that speech therapy is really the most important -- your instincts were right. The other stuff is also important, but concentrating on just one probably didn't hurt Sweets that much. If speech is low, it is hard to score well on cognitive and even some of the physical stuff.

    And ALL our therapists emphasized that teaching sign helps speech -- never never let goofy people try to say that if she didn't have sign she'd speak more. It's just not true.

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  9. I think that it is shameful her interventions and therapies need to be paid for out of pocket and are cost prohibitive enough for you to have to decide what one is "most" important when you know that all of them are important. Hopefully the IEP process will demonstrate what you know already - early and consistent intervention will assist your daughter in reaching her full potential. Hopefully the IEP process will lead to a diagnosis of some sort so that she can recieve full intervention and have her developmental needs met. You are doing a great job and loving her, reassuring her, and giving her a safe place to be while she works on developing and mastering new skills. Don't doubt yourself and the choices you have made.

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  10. Your post wasn't discouraging - it was inspiring. The fact that you are flexible enough to work at what your daughter needs, get her evaluated and look at all the options is just what she needs from you. You are doing wondfully, mama. It is obvious from the way you write and the way you care about your babe.

    And as far as what other people say... BLAH! I am learning that, no matter what, outsiders will say pretty much anything in contrast to whatever a parent is doing. I don't think this is meant to be damaging, but more meant to be helpful. Regardless, it IS damaging, ESPECIALLY if it causes self-doubt.

    I have a friend whose daughter clearly has some severe issues and she has taken the approach "my daughter is just a late bloomer"... and EVERYONE in her life is saying "Get her help! Now!" including her daughter's school. So, that mom has done the opposite approach as you and she still gets flak ALL THE TIME from others. YOU know your daughter, and you are working towards knowing her better every day. Definitely don't doubt your choices... if you had made different ones, you'd hear from nay-sayers anyways; the world is full of them.

    Be blessed.

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  11. I'm so sorry you're on this roller coaster. We have what was undeniably just a late bloomer: cruising and signing at 11 months, walking and talking at 18 months. But, we *knew* he was fine. Since you *know* your daughter needs help, I totally trust that, too, and hope you won't let the other silly people tell you differently. You know your daughter the best, being with her so much more than anyone else, so you pick up on what others can't. I hope the IEP will include those therapies for you for free, because the cost of private therapy must be a huge challenge. I'm so glad some other people who are in the same boat are commenting here so you don't feel alone as you seek a clearer diagnosis and a good plan going forward.

    P.S. We got the comments about needing to stop babywearing and signing, too. But we've done our research, and we know that those things help. Like I said, silly people.

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  12. This is such a timely post for me, thank you! I can only imagine the guilt you likely are feeling, but I hope you move past it. You were doing what you felt was best for her and your family.

    In our state, we have a program where I have a case worker that comes to our home twice per month to work with Spencer and give us "homework." It is therapy of whatever sort he needs... he is only 3 months old. So far, everything seems right on cue so it seems weird to even continue. Then his pediatrician said we'd evaluate next month to see if *additional* PT is needed. Wow.

    I don't know what we'll do when it comes IEP time since we're planning to homeschool. NO clue how they handle that!

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  13. Momma Jorje: At least here in California, I don't think planning to homeschool (or go to a private school) would have any impact on the IEP process at all, at least at the preschool level. We're going through it with Joe now at age 3, and no one has even asked whether we plan to put him in public school in two years (or three).

    Not being in public school could limit the school district services you receive once your child gets to school-age - I'm not sure about how that works, but at this age, public school is still years away so I don't think it's relevant.

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