September 27, 2013

Why We're Done With Speech Therapy

Moe has had speech therapy since he was two years old. That's just over four years of speech therapy. Moe has gotten speech from early intervention, from the school district, and from a private highly recommended speech therapy practice.

We've used various methodologies from fill-ins, to singing, to PROMPT, a method designed to help people like Moe with apraxia.

Moe still doesn't talk. Not even a little bit.

I mean, he makes a lot of sounds, but very rarely are they even context-appropriate approximations. And of course, speech therapy isn't just about talking. His receptive language and communication skills (like pointing and gesturing and nodding yes and no) have greatly improved, especially in the last year.

Moe is a bright kid. He's engaged with people and his surroundings. He tries hard. But the language part of his brain is severely delayed. We know the motor planning piece is a big challenge. He will often shape his mouth correctly, but can't get the breath and sound. Or he makes the sound but can't shape his mouth. Beyond that, it is hard to say why language is so hard for him.

Moe's frustration level and associated behaviors have been increasing in speech therapy. On Monday, he tried to bite the SLP, grabbing and tearing her shirt. I felt terrible. Truthfully, I've been dreading taking Moe for a while. We spend a lot of time managing behaviors, working on the same sounds, working on a wide variety of activities but in the same office environment.

Yesterday, I received a call from the director of the clinic. She is a very intelligent, kind woman. Unlike other people we've worked with, she never implied Moe was a problem. She emphasized how much our SLP adores our family. But she made the point that after the length of time we've been working together, if the therapy is appropriate, we should see more progress. She made the point that we have to listen to what Moe is telling us. Speech therapy, at least the kind they do in this practice, isn't working for him right now.

But how do you give up speech therapy when your kid isn't talking?

She suggested another practice that is set up to incorporate OT and speech together. She suggested that maybe we also take a break for a bit. Sometimes the greatest progress happens during the down times. And if there's anything I've learned about Moe, it's that he needs to get there on his own. We can show and teach, but if his brain isn't ready for speech, there isn't much we can do.

On the one hand, it is devastating. It is hard not to feel like they are giving up on him. But I know in my heart, she's right. It isn't working for him.

But speech wasn't working. OT wasn't working. School wasn't working. Some days, it seems nobody knows how to help him.

We are still meeting weekly with an AAC specialist, who is also an SLP. But the truth is, he's struggling there as well. I'll write more about that another day.

The AAC specialist talks a lot about "total communication," or teaching Moe to communicate in any (appropriate, non-aggressive) way he can: gestures, sounds, signs, and the speech device. Of course, we respect all forms of communication throughout the day, but I'd like to speak with her more about incorporating that into our sessions (rather than just focusing on AAC).

But for now, we're taking a break from speech therapy.

September 7, 2013

Making Positive Changes in the Wake of the Stapleton Tragedy

If you follow many autism blogs or are involved in the autism communities on Facebook, you have certainly by now heard about the attempted murder-suicide of Issy Stapleton by her mother, Kelli.

I did not know Kelli, nor did I follow her blog closely. I make no attempt to defend an indefensible act and I certainly won't give any of my blog's space to those who do. She has been arrested and is in the hands of the justice system now. Last I heard, Issy was still unconscious and is likely to have brain damage.

There is a Stapleton dad and other Stapleton kids who are left to deal with all of this. It is nothing short of a tragedy. My heart breaks for Issy, for her family, and yes, even for Kelli Stapleton who has done the one thing a mother is never supposed to do: harm her child.

Some of what I'm reading suggests that there are only two camps: those who condemn Kelli Stapleton and those who defend her. This is not true. As intelligent, feeling, human beings, most of the people I know are shocked and saddened. They know this was a horrific act and make no excuses, but are having trouble reconciling the act with the Kelli they knew. They wonder what could have brought her to such a desperate point. And most importantly, what can we do to keep it from happening again?

My son Moe is only six. He barely weighs 40 pounds. But he is strong. He scratches and bites. He once walked up to Jelly while she was sitting at a table, grabbed her ponytail, and threw her to the ground. It was scary. The truth is, he is a difficult child to parent. And while it is my job to do so, while I am learning to parent him with love and acceptance and understanding, I am only human. It is hard. There is no shame in admitting that.

Moe is with me 24 hours a day because we do not have an appropriate schooling option for him. There are days when the attacks are relentless. When every diaper change, every buckling in and out of the car seat, every single interaction comes with aggression. My heart races. I spend entire afternoons running interference between Moe and Jelly and the dog to keep them all safe. Nobody enjoys that. Days are coupled with serious lack of sleep. In those times, I do not feel like myself. My patience wears dangerously thin.

In those times, I can't help but think about what happens when Moe is 12. Or 20. How will I keep Jelly safe then? What happens when he's bigger than me? It is an honest question.

I hope Moe and I will continue to learn together what he needs to avoid this aggression. I hope that with better communication skills and more maturity, Moe will be able to manage his frustration. But when I watch videos of fourteen year old Issy, pulling her mother's hair and attacking therapists, I see Moe. I see him in the way she moves. I also recognize Kelli's pain, both physical and emotional. I don't defend her final actions. But her life before that point? Looks a lot like mine.

We say "get help." But there simply aren't a lot of options. Let's get to the nitty gritty. Yes, in an emergency there is 911. But the long term outlook is tough to think about. It's not like I can just check Moe into a residential facility with 24 hour 1:1 care, where I know he will be safe and happy. These places don't exist in great numbers, and the ones that do have waiting lists of several years - assuming one could even afford it. And it makes me incredibly sad to think of Moe not being at home. Respite options are there, but we're talking a few hours at a time. At the end of the day, it is me and Jeff and Moe.


And sometimes that feels overwhelming. Frustrating. Scary. Desperate.

The Stanford Prison experiment studies, Stanley Milgram's obedience to authority experiment and others show that we as humans can be pushed to do things under stressful conditions that we wouldn't have thought ourselves otherwise capable of doing. It isn't that hard to push people to that level. And make no mistake, raising an aggressive, autistic child is stressful. It is not the child's fault. Issy did not deserve to be hurt. But the reality is many parents are under extreme stress.

Some say that the only legitimate reaction is to cry "monster!" and refuse to discuss any potential solutions to the seemingly growing (or maybe just more visible) problem of caregiver stress. To those who have suffered abuse, it seems unfeeling that we would give the abuser a second thought. I wish we could brush them off as monsters. I wish it were enough to say "stop killing kids." It isn't.

It isn't enough to hate and vilify. This keeps happening. Something has to change. We can simultaneously have empathy and say that Kelli Stapleton took the unequivocally wrong path. How can we change the outcome for next time? We can't just say "get help" and not provide that help.

And we certainly don't need to add to the conversation of hate. It gets us nowhere to make claims that Kelli's blog was just a cover for some master plan to murder her daughter. It gets us nowhere to make a petition to get this filed as a hate crime. It doesn't help Issy or her family. It doesn't help any other child or adult who might be in harm's way.

I only want to know how we keep this from happening again. And we cannot have that conversation without admitting that it could be any of us, that we are fallible even in our enduring love for our children. And that sometimes the future seems so desperate, so without answers, that logic and reason and love for our kids and hatred for those who would hurt them are not enough.

I don't have the answer. I have ideas for better living situations for families, for early intervention programs for parents as well as kids, for true long term care solutions for people with autism. A friend of mine is working on a petition to amend safe haven laws. There are lots of things we can do.

But what we have now? It isn't working.

September 4, 2013

Gold Medal Winner

In the special needs community, we like to say "there are no winners in the hardship olympics." There's no better way to make a parent feel lousy than to one-up her with your own problems. You know the type, right? If I said "Poor Moe has had a fever for two days" she would say "That's nothing! My kid once had a 103 fever for a week!" Whatever is going on with you, someone else has it worse. That's a given. But no one wants to play a game of misery one-upmanship.

On the other hand, I have to admit it gets to me when I hear other people complaining about "typical" problems with their kids. "I could not get little Jimmy to go to bed when we were on vacation in Lake Tahoe!" It is petty, but I can't help but think "I would kill to be able to go on vacation in Lake Tahoe - with our without sleep."

We all have problems. The truth is, if I had two typically developing kids, I'd be complaining about the same things. And, yes, parenting any child is challenging. We only know what we know. And as the parent of one child with a disability, and one without, I live in both worlds. I complain about Jelly's non-stop chatter in one breath, then pray for words - any words - from Moe in the next. Both are legitimate, and yet one certainly carries more weight. I have that perspective. I also know that things could be worse. Friends' kids struggle with seizures, mobility issues, and other medical concerns we, thankfully, don't have to deal with.

There is a sociological theory (that I can't seem to find a name for) that says that we compare ourselves to others who are out of reach, but just so. In other words, someone might be jealous of their neighbor's new car, or the size of the houses one town over, but they aren't really jealous of, say Oprah Winfrey. Most of us know we can't actually be billionaires. I suppose that's why they call it "keeping up with the Joneses" and not "keeping up with the Winfreys."

I've started feeling this way within the special needs community. I have become much better at not being jealous of my friends' "normal" lives. Instead, I look at other kids with autism. I see the strides they're making and I wonder why Moe can't be more like them. Why can't he at least talk? Why can't he make as much progress with his AAC device? Why couldn't Moe have Asperger's or ADHD instead of being so severely affected with autism?

It is unfair, of course, and takes away from the very real challenges that families struggling with those disorders face. It is also unfair to Moe who is on his own path, and doing the best he can. We are doing our best together but sometimes I can't help myself.

I recently read "Raising My Rainbow," by Lori Duron. The book is about raising a young boy who is gender non-conforming, preferring girl toys and clothes to traditional boy things. Something didn't sit right with me in this book, but I tried to relate to the author's message. As parents of kids with autism understand all too well, it is tough to be a kid in a world where blending in is valued, and standing out for being different for any reason is a call for teasing and bullies. At one point, however, she relates raising her son C.J. to having a special needs child:
Special needs kids are often defined by what they cannot do. My son cannot blend in. He cannot wear boring socks. He cannot resist having his nails painted. He cannot stop dancing when music comes on. He cannot resist the urge to strike a pose for the camera...
My honest reaction to that passage? HOLD THE EVER LOVING PHONE. Your son has special needs because he cannot wear boring socks?? I should have such problems. (Also, plenty of girls don't dance or strike a pose, but that's for another post.) And this passage seems to take away from the very real problems of bullying and isolation that her son may face some day as a boy who prefers traditionally girl things. But my kid can't talk. He isn't toilet trained. He doesn't use a fork. We cannot find an appropriate school for him, for Pete's sake. I have a hard time sympathizing with a family because their four year old (yes - the kid was skill in PreK) likes sparkly socks.

Is this fair? Probably not. And I admit it comes from a place where I already found much of this story somewhat disingenuous. (It seemed to be jumping the gun, for example, to start researching gender reassignment surgery because her two and half year old loved Barbies.) That said, one message is clear. No one has it easy, and everyone's problems are their own. But before you start complaining, try to keep some perspective and remember that someone is praying for the things you take for granted.

This post was inspired by the memoir Raising My Rainbow by Lori Duron as she shares her journey raising a gender creative son. Join From Left to Write on September 5 as we discuss Raising My Rainbow.  As a member, I received a copy of the book for review purposes.

For other book reviews I've done, see the Book Reviews tab above.


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