Disability, Different-ability, Difference, and Determination, Oh My!

14 Aug

Despite everyone’s reassurances to the contrary, I’d had my suspicions that something was “wrong” with my kid for a few months by the time I was able to get him properly evaluated. Nobody likes to think that their kid is different in a way that’s going to make their child’s life more difficult or hurt them, in the present and/or the future, so your self-denial can work against you. Sometimes other folks even spend lots of energy to convince you that your kid is “normal,” either because they don’t want you to feel bad, or they don’t believe someone could have a problem that they can’t see themselves, or because people just love comparisons as much as they love giving advice. “Well, look at Tomas’s son! He can barely talk and he’s four.” Which is less than ideal, thanks. “My grandmother gave him parrot crumbs, and after that he started talking.” Ummm, I guess I could try that? Not holding my breath for results, though.

My two year old had been able to understand everything for quite a while, and had started talking, but he wasn’t really making progress. He was adding a new word maybe every couple of weeks or every month instead of every day. He wasn’t even putting two words together. All of that is potentially fine. And in Mexico, especially, nobody worries about kids who are slow to talk; it’s practically the norm. “Boys are slower,” people said, or, “Bilingual kids take longer to talk.” Even I sometimes thought, “It’s because he doesn’t need to talk yet; he makes his needs understood just fine with his few words, gesticulations and sounds.” I would try to motivate him to talk, but he absolutely wouldn’t even try to say anything that wasn’t something he could already say. He would suddenly pop up with a new word or new animal noise, and then that would be all his verbal progress for an extended amount of time. The whole, “He’ll talk when he’s ready” theory had started to not make sense to me, because I could see that he wanted to talk. He would try to tell big, complex stories about something that happened, using only sounds and motions. He was starting to get really frustrated with not being able to express himself enough, despite the great lengths he’d go to in order to get his point across. So I worried a bit and then set my worry aside, because there was nothing I could do about in in my small town in Oaxaca.  (I wrote this in January of this year about him, still trying not to worry about his speech: Bilingual Baby Speak, Take Two)

Less than a week after arriving to the US, though, I consulted the blessed (easy to access) internet and found a place for him to get his hearing checked for free. The screening was every Thursday and I found the info on a Wednesday; it couldn’t have been more convenient. The internet also informed me that the same place did speech screenings for free a different Thursday of the month. Truly, the universe has smiled upon us in this whole process. Let me tell you.

His hearing, as I suspected, was fine. That was just something to rule that out as being the cause of any potential speech problem. I asked about the speech screenings and the receptionist informed me that I needed to schedule an appointment for that. And then she actually scheduled me an appointment for twenty minutes later! I was elated. I was going to know something about Khalil’s speech in that very same day.

Needless to say, once I had access to these kinds of services, I was hoping that the speech therapist here in Savannah, Georgia, would tell me to just be patient; that maybe he just prefers animal sounds to words and he’ll grow out of it eventually. Or that I should go ahead and give him parrot crumbs and relax. That is not what the speech therapist told me, however.

“He has Apraxia of Speech,” she told me matter-of-factly, gently but to the point. I took out my pen and notebook and started scribbling, but she quickly handed me her notepad instead, and assured me she’d also give me a bunch of printed information in a moment. She explained that it’s a neurological problem where people can’t connect the word in their brain with the movements in their mouth in order to say the word. The brain has problems planning and coordinating that movement, but it’s not because of a weakness in the muscles. Some people have apraxia due to a severe accident, but in most cases the cause is not known. Most importantly, it is not something that kids just grow out of on their own. It requires frequent, one-on-one speech therapy specifically designed for apraxia.

“But it’s treatable?” I wanted to confirm. “Yes. It’s very treatable. But don’t Google it. I’ve even seen college professors say, ‘There’s nothing we can do for these kids,’ and that’s absolutely not true. I know because I’ve worked with these cases for years, and they do progress. It’s amazing, but they do.This is actually my passion. I am always careful not to over diagnose apraxia, because it is my specialty.”

So of course after the formal evaluation the next day, in which he was diagnosed with severe apraxia of speech, I questioned how sure she was about her diagnosis. “Well,” she started, “I’m very sure, since we can pretty much rule out everything else.” He’s not autistic. There are no other cognitive problems. There’s no muscle weakness, since he’s eating fine. It’s not a lack of wanting to speak. She listed off some other things that most certainly don’t fit the bill for my kid. OK. Convinced. And regardless, I figured, having a special type of speech therapy is surely not going to hurt him. If it doesn’t help then we can reevaluate.

She also recommended that we start signing with him, and she gave me a giant laminated foldout with a bunch of basic American Sign Language (ASL) signs for kids. I’d already learned a few signs before this and thought about learning more before the diagnosis, so her recommendation seemed like another positive.

The best part, though, was that she told me that it could be treated right there, by her, a specialist and passionate teacher. She was taken aback when I told her we’d only be in town a month, but said that at least we could try to do twice a week for that month. Not only was she accommodating and positive, but also the administrative staff was FABULOUS to us. They figured out a way to get around needing an official referral from a US doctor, and then they made sure that we received a major scholarship for his treatment and formal evaluation. Everyone in that building has been so welcoming and helpful to us from the moment that we walked in the door. I feel like the universe put us in exactly the right place at the right time to do what needs to be done for my family.

We headed up to my hometown for a two week visit after that, even though that meant delaying the start of my son’s speech therapy. It was a trip that had been long planned, and something I really needed to recharge my spirit’s batteries. So I got started learning ASL with the kids, and we all started having a good time with that. ASL is a fascinating and very intuitive language. The coolest part was realizing that two of my son’s self-invented signs were actually the official ASL signs for that word. (His sign for little and his sign for eat, in case you’re wondering).

Not only did he like being able to express more things with ASL, he also started trying to produce more words verbally. It was a really cool and unexpected (to me) effect. When he signs “help,” for example, he says something that sounds like “houp”; not very clear to others, but at least he’s trying to produce words beyond his small verbal vocabulary. Signing also helped me worry less and treat him more like I do my other kid; armed with ASL, he, too, has to “say” please and thank you. He has to show me his “yes” rather than say “ha.” He can tell me what color cup he wants without me having to show him every single one in the cupboard. And as much as he feels he can, he tries to say the word, too- like his second favorite color, “boo.”

How do I know it’s his second favorite color if he can barely talk and barely sign, you may wonder? For one, apraxia doesn’t necessarily mean you have any other cognitive problems, although that happens in some cases. It also doesn’t mean you have fewer words than other kids; his receptive language is impressive, and he has the word in his head, he just can’t make his mouth do what it needs to do to pronounce it. On top of that all, my kid just loves to communicate. With the color situation, I knew he recognized all the colors since a while back, even though he couldn’t say them. He knew everyone in the family’s favorite color. When he saw that color, he would say the person’s name. His favorite color is green (“mah” he says when he sees green, palm on chest). But lately he started saying “mah” and pointing to blue, too. So I asked, “Ok, which one is your favorite color?” And he said, “Two! Two!” showing me two fingers in case I was still confused. (Two is one of his newer words- before this he always said “doh” for “dos”.) He can answer any questions as long as I can make I a ‘yes’ or ‘no’ question, or he can show his answer or use one of his words or signs to answer. There is lots and lots of communication going on, despite his apraxia.

One of the coolest moments in the short time since this diagnosis was at the library. The librarians had found us several cool books about trucks (one of his current obsessions), and once it was time to go, I told him, “Let’s go ask how many we can check out at a time.” He said “mah, mah” and “mama no” and walked confidently up to the librarian. I held my breath, wondering how in the world he was going to ask. (We have not yet learned a sign for “how many,” and even if we had, what are the chances that the librarian would know ASL?) He walked up and stood there for a minute, I’m sure thinking the words in his head, and finally made a noise that sounded like that way your voice goes up at the end of the question. Luckily, the librarian had heard me tell him what we were going to ask, so she answered him, which made him proud and confident, as you can imagine.

At this point he’s only had 4 short sessions of speech therapy, but already he is stringing together 2 and 3 words at a time. “Moh apple juice,” he says. He wants to use his “new boo bowl,” making the sign for blue at the same time. The most interesting thing about apraxia to me is the way that sounds don’t automatically transfer when put in different combinations. Even though he can make the sound “oo” and the “t” or the “d” sound, he couldn’t put them together until now. So he could say “moo” and he could say “gato,” but he couldn’t say “two” and he can’t seem to say any other word that starts with that “g” sound. When he was a baby, he babbled the “goo” sound, but he can’t/doesn’t say it now. Funny, right? So apraxia requires lots and lots of practice with different sound combinations, in a structured way, often with visual and physical cues. I won’t try to go into any more detail on methods because I am still essentially clueless, although of course I’m investigating and observing as best as I can. If you’re interested, I recommend you check out this site in English or este sitio en español for more information.

He is adding new sound combinations on the daily now. It brings smiles of rapture to him and to me when he comes out with a new word now. Among the most important that he’s learned: dump, although he still can’t say truck. It is sure to be a whole new level of joy once he gets the word truck. And he wants to add other words to it, so now every dump truck we see on the street is a new dump. We’re practicing a specific set of nursery rhymes to focus on certain sounds, and suddenly he can say shoe. He can say home, which is huge. Tonight at bedtime he went through his list of who was at home and who wasn’t. “Papa no. Mama home. La (meaning Lucia, with the L sounding closish to a W) home. Nonna home. Hmm (makes sign for Dee) home.” He is getting closer to pronouncing this and that, although other folks probably wouldn’t understand him yet. He recognizes stop signs now in the street and if I give him the cue for the s sound or model it in an exaggerated way then he can say stop. If I don’t cue him or model it he just says top, but it’s still amazing progress. We both started jumping around in ecstasy and pride when a couple mornings ago he busted out with “shut da door.” Ok, so the r at the end isn’t very pronounced. But he went and said it to other people and they could understand what he was saying. So much learning! So much excitement, every single day!

He saw a riding lawnmower the other day and was so fascinated we had to follow it around the apartment complex for half an hour. He can say mow, so he says hmm-mow to mean lawnmower. He asks about it several times a day, pointing out the window, inquiring when it will arrive. (I just learned the sign for when, so we’re working on that.)

“If anybody was ever trying, he is,” our brilliant and wondrous speech therapist said. We call her his maestra. My son goes to his class that’s just for him, and he’s very proud about it. “Mama no,” he says, shaking his head emphatically, when I tell him we’re off to his class. “Nonna no,” “Hmm (signs for Uncle Greg) no,” “Hmm (signs for Dee) no,” “La no,” etc. “Mah,” he asserts. His class. He’s got this. I’m just following his lead- his and his teacher’s. She assures me that his brain is primed for this right now. That if we can keep this momentum going- his excitement and motivation, his brain’s elasticity- well, who knows where we’ll end up, if we just had some more time.

Hence our radical change in plans. We were supposed to be heading home to Papi and to our sweet little coast of Oaxaca at the end of this month, to our kids’ radical school, and instead we’re going back in January. Because my child will have no access to adequate services down there. I inquired and investigated and the only thing I found was a speech therapist who can only do group therapy, who’s an hour and a half away, who comes to my town every two weeks for group work, dealing with kids with a wide range of speech difficulties. There might be someone in Oaxaca City, which is seven hours away. I didn’t even inquire, because how could we pull that off?

All the research indicates that apraxia needs frequent, one-on-one, apraxia-specific therapy in order to produce the most chance of success. And the earlier these little ones start treatment, the better the long-term outcome. So here we are. Living with my very generous and helpful family, but living without my kids’ father for much longer than we planned. A father who wants to be and has been involved every day, but who can’t come here yet, because of our immigration process. How do you decide between your kids having access to their dad or one of your kids possibly being able to talk well someday? If it turns out he needs years of speech therapy (which seems likely but not definite) then what are we supposed to do after January? Leave him in Puerto for a couple years without speech therapy until our immigration case goes through? There are many more difficult decisions for our family in the coming weeks, but for now my husband and I have just made this one decision: keeping our little one in speech for as long as we can in one pass, despite all the hardship and inconvenience on all other levels. No one can know where his progress will be in January, I just know that this way we’re giving him a bit more time without completely destroying our family and the life we’ve already built in our town. Their wonderful school is holding their spots for January, and the principal (a dear friend to boot) already promised me they’d learn some signs for him, too. We have to go back for so many reasons, most of all for Papi, but we also have to make our son’s needs a priority, because he so desperately wants to talk. Staying here longer, unexpectedly, is hurting all of us in some ways, but this is what life looks like- full of difficult and complex decisions. I try to chose to feel pleased to be alive and making decisions every day. Some days it’s harder than others.

(For more about our family immigration situation, you can read The Compass at our Crossroads and Ending our Exile )

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“Comparisons are odious,” my mom used to say, quoting Shakespeare, I believe. My son’s mind doesn’t work the same as my daughter’s: they are radically different in some ways. My daughter was speaking in full and complex sentences early on. She is shy and introverted and loves to live in her story-world. My son, though, is outgoing through and through. He can Skype for ages with my family, while my daughter barely wants to say hi. He has to work so hard to express himself, but because of that he forces himself, and he has different skills. He is an expert in his semi-verbal version of circumlocution. He makes connections that other people might not. Like when we were talking about somebody’s name, Johnson, and my semi-verbal kiddo said, “Papa, hahaha,” which is a line from a dumb song they listen to on Bob the Train videos. I was like, “What is he talking about?” I started my guessing game. “Something funny with Papi?” No. “Something about Papi?” No. He keeps repeating “Papa, hahaha” until finally it clicks for me: Ah, Johnson and Johnny! “Like Johnny and Johnson? They’re similar?” I ask him. “Ha,” he says in place of yes. He’s probably thinking, “My slow Mommy finally got it! When will these people learn?” Discovering the complexities of his different mind is a major parenting joy that I am grateful to have everyday.

It can be really hard to think that your kid is different in some kind of scary, lifelong, will-never-have-a-good-life kind of way, whatever that may mean for you. To me, the idea of not being able to speak your mind sounded pretty awful to me- enough to keep me up crying a couple times since the diagnosis. Knowledge is power, though, and knowing what is going on with your kid, acknowledging differences and working with that is the name of the game, for me at least. While I’ve felt some panic and some despair, more than anything I’ve felt relief at knowing what the problem is, and hope that my baby will get what he needs. I have every hope that he will indeed be one of the cases who can speak effectively and understandably most of the time, at some point. But I also am coming to terms with the idea that he might be “different” forever, and that doesn’t actually scare me at all. I have friends who are deaf, and they’re awesome. I have friends and family who need wheelchairs, and they’re awesome. Life is not ruined just by having different abilities. It can be more difficult, or difficult in ways that aren’t the same as other people’s difficulties. I am going to do my damnedest to help my kid talk, and to try to do it in circumstances that don’t destroy our family. But I also know that if he never gets completely “cured” then that’s far from the end of the world. My kid could already talk complexly with just six words; I’m pretty sure he’s unstoppable. I know that in many ways this “disability” is just that: a difference, which is its own type of gift.

 

My determined child with a brilliant sense of humor. What else could I ask for?

Thanks, Universe!

P.S. We are still raising money for our immigration process, which is now more necessary than before. If you’re able to and so inclined, you can donate at this site.  Thanks for reading! Hugs!

 

 

4 Responses to “Disability, Different-ability, Difference, and Determination, Oh My!”

  1. Peg August 15, 2017 at 7:04 am #

    Lucky boy has the best parents ever! Sacrifices all over the map, for the best reasons ever. With all the live and support, all of you will manage. I hate the immigration issues.
    Of course you are making the best of a difficult set of constraints, and love, love doesnt fade, no matter the distance.
    Sending you all some love from up here.😍

    • exiletomexico August 15, 2017 at 9:56 am #

      Thank you so much! We also hate the immigration issues. Thanks for the love!! Hugs from Savannah!

  2. Ellen August 15, 2017 at 11:12 am #

    I’m sorry that you have been forced to make some difficult decisions, but it is clear that you are providing what is best for your little guy, surrounded by supportive family. Hugs, Ellen

    • exiletomexico August 15, 2017 at 8:40 pm #

      Thank you very much! It is sort of a like an ideal situation, if there can be such a thing in the midst of a difficult situation. I’m definitely feeling the gratitude, and the kids are enjoying themselves as well. Hugs to you, too! Take care!

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