I Can’t Be Her Voice

As much as I’d like to put a protective cocoon around her and be her voice among other things, I can’t.

Let me preface this entry with two things: my heart is in my throat these days as we wait for our final piece of paperwork to travel to China for our sons, and our daughter, who is 4 1/2, has severe expressive speech delay. Though she can talk and does very much here at home and is even trying more and more out of our happy home, no one can understand her except for a handful of people.

That is so hard for me to accept right now. Sometimes it is easier; right now, it is really tearing my heart out. I watch her struggle and it tears me up inside.

Yesterday at the pool, she was so excited when some other little girls came. They are both about 6 months older than her, but they are really sweet little girls and played with her last summer. They know “she can’t talk like us” as they put it. They know she had something wrong in her mouth.

But yesterday, they sort of distanced themselves from her after awhile. And yet, she DID NOT GIVE UP. I wished so badly for her that she would just give up. But she kept trying to engage them with this toy or that toy she had brought, with doing this little jumping move or that. It was not enough this year. They are all getting older. I get that.

But my heart still aches for her. As she gets older, I know this is going to just be harder and harder. When you can’t communicate your wishes or answer little people’s questions, they assume you either can’t hear or you don’t want to talk to them. Oh bless her heart!

Yesterday I bit my tongue more than once as I wanted to scream, “She WANTS to play with you.”

“Yes, she likes the color pink!”

“Yes, she has a name, and she IS SAYING IT. You just can’t understand her.”

At one point, she came over and was looking rather sad. You see, she has been working SO HARD on pronouncing her name. And she is doing a marvelous job. It sounds so clear to me and to others in our family. Even her ST was impressed. But the little girls: they couldn’t understand her and told her as much. It hurt her feelings. They didn’t mean it that way; they were not being unkind. They really tried to and their moms did step in and remind them of her name.

But.
But.

I can’t be her voice for her for forever. She will be five years old in October. When I hear two-year-olds speak so clearly compared to her, it breaks my heart.

No one told me how hard the special need of not having a voice (or at least one that is understandable) would be. No one.

I do not wish to discourage anyone from considering adopting a child with a speech delay whether it be from cleft lip and palate or something else. I just want to prepare you and encourage you to prepare your heart for the hurt it will feel for your child as they struggle. But you see, it is her struggle to take on. She has to face this, and she is with more strength than I can even muster most days.

A year ago, the Prez and I swore we’d never take on the special need of cleft lip and palate again. Not because of the countless surgeries through adulthood. Not because of the way a child’s face looks. Not because of the rude stares and questions. No, not any of that. Only because we cannot imagine watching another of our children be cast aside because she refuses to speak knowing they won’t understand anyway or watching her fall apart in tears on the floor because WE can’t understand a string of sentences she has just said and she KNOWS what she was saying.

We can understand most of what she says, but she often uses three words or less because when she strings together several sentences, we get lost. And she gets mad. At us.

It is much harder than I imagined. But would we do it all over again?

Well, you know what they say. Never say never. I guess God had different plans, because we are doing it all over again.

Our younger son waiting in China was also born with heart disease and cleft lip and palate. As far as we know, his palate has not been repaired. He will be five years old next week. We know he’ll struggle and have to fight for every sound, every vowel, every consonant, every syllable, every word, every sentence. Most likely for years. And we’ll be there fighting alongside him. And no doubt so will his little sister.

*Edited to Add: After reading Debby’s comment below (THANK YOU Debby!), I need to clarify. I don’t always stand to the side and let her be her own voice with no help from me. I definitely find a balance. As her Momma, I can definitely tell when she needs and wants my help and when she doesn’t. My little girl is determined with a capital D! So anyway, I realized after Debby’s great comment with great points that I needed to clarify. It is definitely a balancing act. I in no way want to communicate with this post that we should never interfere, which could definitely be a detriment to their feelings of self-worth and self-confidence. But the truth is, our DD will probably always have a speech impediment and I need to help her learn how to overcome that and help build her confidence in her own abilities even if others tell her otherwise. I need to encourage her to talk and to keep on trying even when it would be much easier to just give up. Hope this clarifies my post and again, thank you Debby for your excellent follow-up comment.*

Comments

  1. Wonderful post, and my little one and I are right there with you!! And she had her repair much younger than your daughter. But still often I don't get what she says and it is so frustrating for both of us. It worries me to no end too, the delay. I have almost already decided that she will do Kindergarten twice, not because she is not smart, but she will need the time to improve her speech. She will need it both socially and academically. I can see her being marked down for reading the word "books" and her teacher thinking she said "book." My heart breaks for her as well, but like yours she is determined and strong willed. Both qualities given to her for a purpose:)

  2. So good! Speech has been the biggest issue with our son (nearly 4) from China with CL/CP. I am always encouraged when I see improvement. It's really frustrating for him b/c he's so extroverted and loves to communicate.
    Excited to hear you are adopting another one!!
    Blessings,
    Lesli

  3. Mike and Barb says:

    I'm glad you're sharing your heart openly. Parenting a child with significant speech issues can be very grueling. I know it, I'm there too. My son is 9 now and can talk, but it's a very immature way of speaking, as he still cannot say many sounds. It was years until he was able to say anything that anyone understood.
    So when parents go into the adoption of a CP child thinking it's a "minor" need, I cringe. Thank you for educating with gentleness,
    Barb

  4. David and Sarah says:

    Jadon really struggled with this, as well. When he was 4 1/2 he had p-flap surgery, and then he really took off. But, at 9 years old, I know that he is still affected by the fact that when he was 4, very few people understood him. He is hesitant to talk to people that he doesn't know, and that is so sad for me. He's such an incredible kid, but most people really don't get the chance to know him.

    Praying that you travel soon.

    Blessings,
    Sarah

  5. Elizabeth Frick says:

    A friend shared your post with me. I actually expressed the same frustrations on my own blog today. My little one has hearing impairment and a sub-mucus cleft palate. She'll be 3 in October and is still speaking like a 15-month old. We're at the point where we're going to take on learning ASL just so she can communicate with *us*, let alone other people. So far, the other kids haven't discriminated against her because they're young enough to be happy just playing with each other with minimal communication. But more and more, her peers are chattering away in full sentences, while she still barely utters a word in their presence. It's heartbreaking because it makes her seem so much younger and less mature than the other kids. And yet, the opposite is true. She desperately wants to make friends and is tickled when other kids play with her. But I fear that the gap between her and the others will only widen if we don't find a way to bridge it.
    How much signing have you (or any other commenters here) done with your child(ren)?
    And as sad as it makes me that other kids are struggling with these same issues, I am so relieved to find other parents who are frustrated and heartbroken like me.

  6. Hartley says:

    I just stumbled onto your blog today and wanted to say thank you for providing such a beautiful resources for families who have adopted special needs kids, and those who want to! Bravo!

    Your story is inspiring,
    Hartley
    http://www.hartleysboys.com

  7. sierrasmom says:

    My bio son had a speech problem and he jsut gave up talking to people. Not many people could understand him so he wouldn't talk. There were many people who thought he COULDN"T talk. Luckily with speech therapy, by the time he started school he ws doing better and people could understand him. I have said it before and I will say it again …You are the best Mommy for Lil Miss!!!!
    Hugs
    Kathie

  8. L,
    I comment from time to time when the subject is speech delay. :)
    God Bless you!
    You know, i know very little about the second little boy that you and the prez are adopting, but to me, from the first fotos from the agency's list, he looked like S to me! From the beginning, i thought to myself, how striking is the resemblance there–not b/c of cleft lip etc. –the look in the eyes etc.
    That determination will carry S so far. :)
    I am a speech therapist, and working with children with cleft palate is challenging work, but with a determined spirit children can do so much! :)

  9. Melissa says:

    Thanks for sharing your heart…I could feel myself at times in your words, as we found out our son was deaf soon after coming home from China and there are times I just struggle watching him try to communicate, and us try to help him. Each day is a work in progress, and each one is a gift in itself. Thinking of you as you await bringing your sons home!

  10. Jennifer says:

    When my son was struggling with an expressive speech delay, one tip I found online was to carry a portable recorder – the kind that fits in your pocket that you might use to record a "note to self" memo – and when you get to a point where you can't understand and your child is becoming frustrated, let your child tell you what they are trying to say while you record it. Then you can play it back again and again as much as you need in order to decipher it while sparing your child the frustration of repeating herself. Your child will see that you are trying to understand. Just a thought.

  11. momwithfaithandhope says:

    I am living through the same pain. My daughter did not have CP, and was not SN. She's from Taiwan, and has expressive speech delay. She struggles on the playground at preschool, at parties with kids close to her own age. . .I am starting her in kindergarten a year later, hoping she will begin to catch up so that it won't be as hard. I know, I'm protecting her from the inevitable. . .but her teacher agrees, she won't be ready yet. Her ST thinks she's doing great, and so do we. And we often understand what she's trying to say, but there are times where we don't, and she just gives up, or says, "ummm," and just changes the subject. She ends up gravitating to babies and adults. The ones who don't judge, and the ones who try to decipher what she's saying or can hold her hand and be lead to the toy she wants. Thank you for sharing, and thank you for allowing me to share as well. Maybe our girls can have a cyber play date via skype!!! Maybe, just maybe, they have a secret language only they understand.

  12. bbmomof2boys says:

    I understand your frustration and her frustration! Little T was a heart baby and was diagnosed with verbal arpaxia earlier this year. I too was NOT prepared for this special need. Her heart? Its fine – no worries but her speech, no, not there. Hearing younger kids carry on a converstation with no problem yet when I asked her what she did at school today all she can do is sign play and eat. Oh, she does tell me about her day but we can't understand what she is saying. And being 4, she is starting to get very frustrated too. People tell me all.the.time – she'll start talking soon and then you'll wish she hadn't. NO! NEVER! I would love to hear how her day went, what she is thinking, if she hurts, or if someone was being mean to her. Little T presses on though – and I'm so proud of her. She picks up new signs everyday and has me running to the pc to look up what she's is signing to me!! She's come a long way in the past 2 years and I can't wait to see what the future hold for her.

    ~Carla

  13. Oh, how I can relate to this!! My little girl from China is also 4 1/2 and my heart has broken so many times recently as I've watched the other kids who she used to play with just give up trying to understand her and move on. You are so right – I was SO not prepared for this either! I am sad because sometimes I feel like her dad and I and brothers and sisters are the only ones who can see her TRUE personality, who she REALLY is – because others are just lost on not understanding what she is saying! I want the world to know how wonderful she is! I want the world to see her beauty and her incredible sense of humor. She is one of the funniest children I've met, but you wouldn't know it. How that saddens my heart! But I know in my heart that God created her just the way she is! And while we work and work to give her a voice through surgeries and speech therapy, etc. etc., I SO do not want to miss just who she is today…who God created her to be in this very moment. Thanks for putting words to my recent struggles. I just found your blog today! I love the open honesty that I am starting to see in the adoption world. It is GOOD. :)

  14. Stefanie says:

    Awwww, this makes me tear up!
    Like your Lil' Miss, our Isabelle has BIG speech delays. In fact, many people have no idea what she's saying when she uses more than 3 or 4 words. And I know it causes her grief in her Pre-K when kids younger than her can't understand her… and tell her so.
    It's heartbreaking some days. But she has more courage and more determination in her little finger than I have in my entire being. She inspires me! I am SO blessed to be her mama :)
    I love to hear how God changed your heart about bringing home another child with similar issues to Lil' Miss. What a wonderful blessing all your experience will be to your newest son! And I am certain those two will be a blessing to each other as well :)

  15. This is a good post. I know that you are trying to teach self advocacy skills. They are mighty important…yes…but so is self esteem. Being 4 yrs further down the rd than you are, I can tell you that my daughter did not have the skills, resourcefulness, patience, or ability to really deal with that type of situation (that you talked about in your post) until last summer. At 7, she took off. Her confidence took off, because at 7, if someone could not understand what she was saying, she had other tools at her disposal to make herself be understood.
    I think it is OK, to step in & be their voice before they get to a point of total frustration. I'll still do it today, if I sense my daughter needs help.
    It's a balancing act to be sure….self advocacy vs interference.

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