April 28, 2010

Never Doing Enough

I had intended to write about my family's amazing trip to Disneyland, which we took this week....but that will have to wait for another time. Instead, tonight I am feeling down.

I feel like I am not doing enough for A. I feel like I'm failing her.

I know, I know....anyone reading this will protest. And in reality, I know that I am doing all I can. But right now, I'm feeling like I'm coming up short.

Today we had an audiological assessment paid for by the school district. We see an audiologist twice a year at Children's Hospital, where we get both aided and unaided hearing tests. However, apparently A's IEP states that the school district will pay for her to get assessed once a year by a private audiologist. One name on the provider list was an audiologist I had heard great things about, so I jumped at the chance to get a free second opinion by someone well-recommended.

It was a great assessment. A did fantastic, and performed really well. The tests showed the same thing as all her previous tests at Children's Hospital showed...profound hearing loss in her left ear, and moderate hearing loss in her right ear. She is aided-to-normal (or just about normal) in her right ear, which is such a blessing. After the assessment, the audiologist and I sat down to talk about A and her needs.

The doctor indicated that A has the potential to fall through the cracks. She is bright, and can hear, and is now talking. Because of this, someone may look at her and think she is doing okay. The truth is, she has a major language delay (not just articulation, but expressive and receptive). This is due to many factors: she has hearing loss; she has a tracheostomy; she has a paralyzed vocal fold; she had a cleft lip, which means that where is was repaired may be stiff and not as pliable for movement; and she spent the first years of her life using a feeding tube, meaning that her tongue and oral motor skills were not developed. She has a lot of work yet to do to get her language to where it needs to be. She said that kids that don't build a solid language foundation (not just vocabulary, but concepts, etc) risk having trouble when it comes to third or fourth grade, when more is expected of their reading, cognitive, and reasoning skills, for example.

The doctor asked me what services are being provided (per her IEP). I responded that she is getting speech therapy, physical therapy, and adapted P.E. (she did not qualify for resource this past year). I AM having her reassessed for resource before her next IEP (which is next month) and also having her assessed by a vision therapist...I just wanted to make sure I was dotting my i's and crossing my t's so to speak. I would hate for A to qualify for something but not receive services because I hadn't requested an evaluation! However, the audiologist today said that maybe there were some services that I don't know about that I can look into.

Huh? There is something else? As my husband said to me tonight, you don't know what you don't know. And it scares me that maybe I don't know of service to request...something that may possibly help my daughter further.

She also asked me if A's speech therapists (and she has two: she gets 2 hours of group therapy through the school district, and half an hour of one-on-one therapy through our private insurance) give me homework to do with A at home. Umm....no. And they should, now that I think about it. I need to be doing more at home to boost A's language. And because I am not a speech and language therapist, and because no one gives me work to do at home, I don't know what to do so I do nothing. Just our usual talking....but no "work".

So I feel like I'm failing A. Partly because I'm not doing extra speech and language work at home, and partly because maybe there is more help for her out there that I don't know about. The thing is, failure is not an option. A is thriving, flourishing, and doing better than I had ever dared to dream. She is a miracle. I will not let her fail. I will advocate for her and push for her and fight for her. I just need to know what I am advocating, pushing and fighting for. I need more tools, and need to know more of what is out there for us.


  1. Sometimes it can be so overwhelming. I know that feeling of never doing enough (I think it's probably part of the job description of parenting a child with special needs!). And I will protest... You are not failing her! She's obviously thriving. Keep on keeping on. You can't beat yourself up for things you've never even heard of!

  2. You are speaking directly to my heart here. I have felt so much frustration when I find out about a program that has been available for Gracie, but that I knew nothing about.

    This has been one of the biggest frustrations for me. I feel like no one tells anyone anything about what is out there. It is like the school thinks we know about it, so they don't say anything. How do we know to ask for it if we don't know about it?

    Just know that you are doing everything that you can and the progress that your daughter has made is proof of that! Keep up the good work and remember that you are not alone!

  3. Thank you both. I know you know how I feel. I wish they made it obvious for parents what services are out there, so that we could ask for them. Now that I think about it, I'm not sure there ARE any additional services out there, but hearing that there *might* be scared me. Parenting is hard, for any parent and any child, but when you have special needs to deal with it makes it oh-so-much harder.

  4. You're so passionate about helping A in every way possible, that is admirable. You don't lie and wait until someone offers you something you are out there pounding the pavement, calling people, getting stuff done for her. I think though the fear of failure is ingrained in all of us. We are entrusted with these little people who are dependent on us in so many ways. But really you are not failing A. Not in any way. You are doing everything you know to do and J is right you can't know what you don't know. Be as gentle and forgiving of yourself as you would hope A is of herself when she stumbles on the road of life.

  5. I believe that doing "everything" you can for your special needs child is not possible. You could literally work around the clock doing nothing but therapies. We must live our lives too. It's best for everybody. I do the best I can but frequently feel like I'm failing. I don't know any moms who don't feel like they could be doing better at something. Give yourself a pat on the back for everything you do DO!

    And BTW, thanks for reading my blog!


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