A new study in the journal of Pediatrics has reported a much higher risk factor for siblings of kids with autism. According to the study, children with at least one autistic sibling have a 19% (26% for male children) chance of developing autism themselves, and this risk increases to 32% if there are multiple children affected.
This means my son, who is developing typically has (according to this study) a 26% chance of developing an Autism Spectrum Disorder. That's a scary number.
There are many families I have seen where a first-born child with autism precipitates an end to more pregnancies. This news will make that trend even greater. Alanna was diagnosed after my wife was pregnant with Tyler, but if she were diagnosed beforehand, we would have thought long and hard about getting pregnant again. With the risks as high as this study mentions, we would have probably thought the risk was not worth it.
When Alanna was younger, I used to buy her a lot of toys. I still buy too many toys for the kids. My wife will tell you it's my weakness. Toys "R" Us is a bad store for daddy.
Alanna was never interested in playing with toys "properly" when she was younger. She would play with parts of the toys, or lick them, smell them, stare at them, or do any number of "weird" things with them. This perplexed me a great deal, especially before her diagnosis. I tried to show her how to play with them properly and figured if I buy the "right" toy, she would like it and play with it a lot.
Fast forward to the present day...
We have taught Alanna how to use a number of toys as they were "designed". We have taught her how to play with pretend toys, and how to even pretend how to use things for functions for which they were not intended (e.g., feeding a baby with a block!) We are presenting trying to teach her to play with a variety of toys if they are laid out for her to play with, and we're trying to do this without a visual schedule because this is unnatural and we only want to do that if it is absolutely necessary.
Alanna will play with toys, but usually not for very long without prompting. She loses focus and goes on to the next thing. This is usually tied to sensory regulation. If she is regulated and isn't engaging in activities to stimulate her senses, she plays better. If she needs deep pressure, bouncing, running, etc. to stimulate her senses, the playing will not last long unless it is prompted.
It occurred to me the other day the purpose of play really is supposed to be fun. So buying her more toys with the hope she will find out fun means I have to obtain toys she finds fun. Most toys she finds "fun" are sensory toys. She will also play games with me, but on her own terms.
I used to think Alanna needed every waking minute to be "redirected" to ensure she was learning from her environment. Not only with that attitude completely burn you out as a parent, it is also unfair to your kids. Here's the reality - for Alanna, bouncing on the trampoline and bouncing on her bed is fun. Pulling out facial tissue and rubbing it all over your body is fun. Licking stickers and sticking them all over the place is fun. Emptying your closets and throwing your clothes on your bed is fun.
Maybe playing the way I want her to play is work. Maybe she does it sometimes because she is interested but mostly because I want her to do it. Kind of like when your dad tries to show you fishing is fun, but it's not.
Lest you think I've converted to neurodiversity with this post, I haven't. Play skills are still needed for school, to interact with others and to learn other skills. But it's still work. I can hope she will eventually find it fun. I can try to make it fun, but if I'm really giving her time to relax, shouldn't I let her do what she wants to do to relax (within the limits of safety and sanitation?)
Maybe the next time she is rubbing something all over her face, I'll just join her. It's work for me, but maybe that is the price of entering her world.
I have written before about the concept of autism recovery. Deborah Fein made headlines some time ago by stating a certain percentage of children with autism will indeed recover, and many autism therapies claim recovery with their methods. This percentage sits somewhere (in her estimation) between 10-20% of all cases.
When Alanna was first diagnosed and I learned recovery was even possible, it was my goal for her. We had been very fortunate - we had an early diagnosis and possessed the resources to get intervention very early. Although non-verbal, her initial IQ test showed cognition in the low average range. Alanna is now three years old and will be four years old in November. Though IBI has only been going for 15 months, she has had other interventions for at least two years. Her talking is coming but it is oh so painfully slow, and she is so frustrated by it.
I realize now recovery can't be the only goal. Although I would be thrilled to see it happen, it is not very likely. Once very severely impacted by autism, she is now only moderately affected, but still has difficulties in her day to day activities. Now what we must focus on as parents is to give Alanna as many tools as we can to make her as independent as possible, so that when we are gone, she is secure.
So while I hope for recovery, I plan for complete dependence, and we continue to push her daily to learn new skills and reach out to those around her. It is not defeat, it is prudence. I am not limiting her at all - I am simply trying to be realistic. I hope she will forgive me for it later.
To a parent with a child who has autism, the beginning of speech seems a lot like this - the mythical Phoenix rising from the ashes of past dreams. We have spent a lot of time and money having Alanna work with a speech-language pathologist, with follow-up from her IBI team to get her to speak. She has speech apraxia, so despite her best attempts to imitate vocally (despite effort, intention and desire), she cannot make many sounds without a lot of help. It is incredibly frustrating for her. I am convinced without this additional impediment she would be very vocal (perhaps not communicating functionally, but have no trouble with vocal imitation).
We have been using PROMPT, a technique that gives Alanna some physical cues about lip, jaw and tongue placement to make sounds. Once she has a sound, she also has difficulty isolating it and combining it with new sounds to make words. For example, trying to get her to imitate \o\ (as in go) can be tough because she learned this sound as go, and so the "g" has to be in front to get to the "o", and if you want to combine "o" with something else, we have to get her to drop the "g".
However, she is now "emergently" verbal. We have several words that are consistent and have meaning:
And we have a word list of perhaps 26 words she can sometimes say, but needs physical prompting or she is inconsistent or we can't understand the speech production.
Of course all of this is very expensive but it is also worth it. Every word she can say is like gold because it makes it easier for her to communicate and be understood.
Friends of ours recently had a baby boy. It is their third child and second son. The excitement of his upcoming birth was all around them and they were waiting impatiently for it. But one day he stopped moving in his mother's belly and after being rushed to hospital, he was delivered by emergency C-section.
His heart had stopped, all blood drained from him. Two transfusions later, he is alive, but with severe brain damage. The doctors are gently pushing his parents to take him off life support because his organs are precious and could save the lives of other babies in dire circumstances.
Live and be so disabled as to be in a vegetative state, or die and save another. When he is off life support, he may die, or he may live. Yet no parent should ever have to make this decision.
Despite the challenges of raising a child with a disability, despite the sleepless nights, the anxiety, the financial and emotional costs, despite all of that, I get to try to be a parent. Our friends role as parents to their son has been reduced to a single choice.
Would my broken heart still sing...
If I lost it all
Would my hands stay lifted
To the God who gives
And takes away?
If You take it all
This life you've given
Still my heart will sing to you...
- Kutless
Most of you know that I am a biomedical skeptic. Alanna is on a gluten-free diet but beyond that, we do not do much in the way of biomedical treatment.
All of that may change next week. After our failure with clonidine my wife and I decided it is time to give in and go see a DAN doctor. We feel that we have nothing to lose and possibly something to gain. After all, the gluten free diet did help with gastrointestinal problems, so perhaps Alanna is sensitive to diet.
I am hopeful because there is some research out there proving some of these therapies can be helpful, but also nervous because of the potential for harm. However, we have ABA therapy and speech therapy well established now, so any additional huge leaps in progress we would have to attribute to biomedical intervention.
In general I would describe Alanna as generally happy, but sleep deprived and on many days, just "unwell". She is often lethargic and spacey and I don't know why. Sometimes she cries for no discernable reason. I have to wonder if she just feels ill... sort of like I feel when I don't exercise and eat crap for three days straight.
Maybe it will help, maybe it won't. But before we pump her full of more drugs, we feel we ought to at least investigate it.
We have tried for months to avoid medicating Alanna for sleep, opting instead for melatonin. This has worked well generally - in a good week she will sleep through 5 out of 7 nights without waking. In bad weeks - well, each night is a prayer said before bed that she might sleep.
After seeing a neurologist, we decided to try clonidine, a medication typically used for blood pressure but one that had some good research behind it for reducing night wakings and inducing sleep. We started it two weeks ago...
... and both Mom and Dad believe it is a failure. In the last two weeks she has slept worse than ever, waking multiple times at night or waking early in the morning. She does fall asleep more quickly, but the melatonin did that too. We kept titrating up her dose until we hit 0.1mg today... and she was a complete zombie.
We are not totally surprised by this. Alanna has demonstrated this paradoxical reaction before with Benadryl (it made her more excited and hyper) when we tried it before too.
So we are tapering her off this medication and hoping melatonin does the trick until the next appointment. I hate medicating her but if it will help her sleep regularly, the whole family, including her, benefits. But it's got to work, and clonidine is not the drug for her.
