Autism Understanding & Acceptance 2013, Bonus Day: THANK YOU

The response I have gotten from this series of Facebook posts has been overwhelming to me. THANK YOU, all of you.


I had no idea what I was starting! It started as a fun little idea I had as Autism Awareness month began 30 days ago. I wondered how I could make this month actually increase awareness, because I know that when I look at numbers & statistics about autism I get numb. I started posting Thomas’ story, which turned into our family story, and all of your positive feedback and the love that was being sent propelled me on. I looked forward to every night, planning what my next topic would be and what picture I would use. It turned out to be quite a pivotal month for me. And honestly, while the feedback has been incredible, perhaps even more beneficial to me was the practice of writing on a regular basis, and being able to look back now and see our journey as it stands so far. We get so busy with today’s demands that taking the time to look back and see progress just doesn’t happen.

I will compile this into some manner of finished product. I have no idea where it will go from there, but I don’t necessarily need to know the final destination in order to take the first step.

Thanks again. I’ll keep posting as I have updates about insurance coverage for ABA, IEPs at school, and more exciting new things Thomas is doing. Hugs to you all.

Autism Understanding & Acceptance 2013, Day 30: Where we are now

So, what is up with Thomas now? He is turning 12 this summer, a fact that is nearly inconceivable to Rob & me. He has been a client of the BACA/under Carl Sundberg’s supervision full-time since November of 2007. We ironed out a part-time situation for Thomas to be in school and receiving ABA services, but the more we saw how he progressed with ABA, the more saw how important it was to withdraw him from school for a while to let him really blossom as much as he could with this “Cadillac of Care”. This did break our hearts a bit to take him out of public schools because we are public school people – we believe in them and support them and have many, many friends & family who teach and/or are public school administrators. God bless them all. But we simply could not ignore how much progress he was making with ABA, and made the decision to go all-out with it until insurance reduced hours or we felt he was truly ready for full inclusion.

That decision was one of the first of many in which we had to set aside what we wanted for him, and instead act on what Thomas needed.

We have just learned in the last week that Thomas’ ABA hours will be cut. Not completely, I am glad to report. As it stands today, as I write at 1:55pm on Tuesday April 30th 2013, his hours will be reduced from 32 down to 20 a week. I am this specific about the timing because we believe we’ve just caught our medical reviewer in a bit of a…um….falsehood when making the determination to reduce his hours. We’ll see what happens now that his primary care doc and the clinic take this information and run with it. We can live with a reduction in hours, and even look forward to Thomas having the opportunity to show us what he can do in the public schools. It will still undoubtedly be in what is referred to as a “self-contained classroom” with as much inclusion time as possible. What we can’t live with, regarding the reduction in hours, is the date that our insurer has randomly chosen to start the reduction: July 1, 2013. I thought the point of reducing ABA hours was to allow him access to the public school education to which he is entitled…so how does it make sense to reduce hours at exactly the time of year when the school doesn’t provide services? So, we appeal, make phone calls, take copious notes, and document, document, document. So it goes. These things come in waves, and it is one of the primary reasons why I am currently employed half-time only.

Speaking of things coming in waves…with the news of a reduction in hours, Thomas is indeed headed back to the public schools. He therefore needs an updated IEP and honestly, we are starting from scratch because he hasn’t had a full IEP in years. We’ll need to iron out what he requires to be able to benefit from a public school education, what they have to offer, and what creative ways we can work together to make this opportunity more than just glorified child care for him (remember my post about his being cute & smiley and very able to entertain himself for long periods of time?) We have confidence in our school district – I personally would not have him anywhere else. We’ve heard wonderful things about his teacher for next year. And my years working at ASK (About Special Kids – www.aboutspecialkids.org) have prepared me well to go into this Case Conference as an equal player. We will be the collaborative parents we always have been, and I do believe we will work something out for him.

And the other wave…in the midst of all this, earlier this month Thomas was finally been targeted for the Family Support Waiver in Indiana. We were put on that waiting list December 14, 2005. What are Medicaid Waivers? In a nutshell, they are the alternative to institutions. Remember Rainman, and where he lived before Charlie took him on their road trip? That’s where individuals with disabilities lived in previous generations. In fact, it used to be that once a child was diagnosed with autism, mothers were told to institutionalize their child and go have another baby to replace that one. Nice.

Coming back to waivers, they provide staffing, services and supports so that individuals with disabilities can live in their homes & communities and live as independently as possible. So this is good news. But it is mixed news for us, because with this recession and the ever-increasing numbers of people diagnosed with autism and other developmental disabilities, the programs have had to be changed drastically. So when we got on the waiting list, the services we were expecting would have allowed for a young adult Thomas to have enough supports to live in an apartment with a roommate and have staffing to help with grocery shopping, transportation, bathing, dressing, etc etc etc for the rest of his life. Now the funding will allow Rob & me to provide some “meaningful day” sorts of supports for him, but the finances will not allow Thomas to live independently. So yes, as of now, he will be living with us until both of us turn 80 or we are both gone from this world. That’s not being dramatic – those are the facts. And with the tide of cutting funding to social programs like Medicaid, this is what happens. Now I know that the recession will end and the waiver programs may change again – they certainly have completely changed once already in Thomas’ lifetime – but that’s where things stand now.

Rob & I have taken many steps already to assure Thomas will have what he needs when we are no longer here. We have never thought that the government would take care of things completely for him. It’s our responsibility and we take it. We know more about special needs trusts, guardianships, letters of intent and wills than we ever thought we’d need to. Those things are all set.

So, there it is – for now.  I have decided two things: one, there will be a bonus post tomorrow – a quick one – and two, I’m opening this up for questions. Private message me if you have a question. I will reply either personally, or if I think it is appropriate to answer as another post, I will do so. See you tomorrow.

Autism Understanding & Acceptance 2013, Day 29: What's causing it?

Yep, I’m going there. But I may surprise you with what I’m going to say: I don’t know. And I could just stop there. But no worries - I have plenty to say on this matter, and I’m sure some of you will not agree with me, or will feel the need to argue your point, or bring up something you think I haven’t considered yet or don’t know about yet. I’m girding my loins for responses. Believe me, I’ve lived in this volatile world now for seven years and I’m used to it.


Here’s the shocker: it really doesn’t matter to us at this point. It’s too late. How it happened is behind us. Rob & I are too busy maintaining Thomas’ needs day to day to spend much time worrying about why. I understand and acknowledge that it is of the utmost importance that research be done on what is causing the explosion in autism diagnosis…and when I say explosion, I mean explosion. When Thomas was diagnosed in 2005, the rate was 1 in 166 children. Then it went to 1 in 150. Then it went to 1 in 100. Now we are at 1 in 88, and if you just count the rate in boys, then it is and even higher rate. What the heck is going on here?

Here’s where the screaming starts. Vaccines. Toxic environment. Genetics. Change in diagnostic criteria for autism. Change in diagnostic criteria for mental retardation. Better screening and awareness. Increased diagnosing so students can qualify for IEPs. Having parents that are too educated. Having used an epidural. Food allergies. Just about anything you did while pregnant. (Did you breathe while pregnant? Well, yes. Well damn woman, what were you thinking???) Low birth weight. Premature birth. Having older parents. Hell, I even read that watching Baby Einstein videos causes autism.

You can see why there is screaming. No one knows. Or maybe better put: everyone has their theory, and everyone dismisses all the other theories, and pretty vehemently. No wonder Rob & I have withdrawn from all that mess & hollering. We’re too busy looking for the light.

So I will share what we know and what we believe. Thomas is fully vaccinated and had no noticeable reactions to any vaccine. He did not regress. He started showing red flags at about 4-5 months which we did not notice but other more seasoned parents of children with special needs did. We believe he was born this way. I had a healthy pregnancy. I have lived and breathed the world of autism for the past seven years, and have done a ton of research. I have come to the conclusion that vaccines did not play a role in his autism. Trust me. What we see in Thomas is so many of Rob’s & my personality traits just ramped up about 100 times. SO…we believe that for our boy, genetics got ramped up big time by something, probably something in the environment, and probably the big combination of toxins that are in our environment and not just one toxin or insult. The catch phrase, and pardon the current political incorrectness here: genetics loaded the gun, the environment pulled the trigger.

But here’s where we get super frustrated: we think there are several types of autism out there, and the reason behind all this screaming about causes is that we are looking for one cause of several different disorders that all look like autism. In this case, they all look like ducks & quack like ducks, but maybe it’s a big gaggle of geese, quails & blue-footed boobies mixed in with the ducks instead.

To make my point: take two kids diagnosed with autism. One developed typically until 12-18 months, talking, interacting, all the good stuff you look for (and that doesn’t make you want to flip-off the book “What to Expect the First Year”), but then heartbreakingly and suddenly regresses, usually closely coinciding with a well-baby visit & vaccines, and develops terrible gastro symptoms & behaviors which are corrected by a special diet. Another kid does not regress, but instead takes his/her time and eventually falls way behind peers (hence inspiring the flipping-off of the “What to Expect” book), has no gastro symptoms and does not respond to diets. Both are diagnosed with autism.

How does this happen??? Different onset, different symptoms, different responses to treatment, and yet we categorize them both with the same disorder? NO WONDER we can’t find ONE cause! There ISN’T ONE because it’s NOT THE SAME DISORDER!

So for now, we don’t know. And Rob & I keep looking for the light.

Autism Understanding & Acceptance 2013, Day 28: What not to say – and what to say

During these last years, people have said many things to us to help, sustain, uplift and support us. All these statements come from loving hearts and have been made with only the best intentions. In my new career, I have had the honor to work with fellow moms of children with special needs and speak with hundreds of parents, grandparents, and caregivers all seeking guidance on how to raise their beloved child/grandchild. I have therefore, over the years, been able to hear these caregivers process things people have said to them, and I’ve processed through them myself. I thought that since I have your attention, I might bring some of these reactions to you for your consideration.

“God chose you for this.” Well, I’ve already written about that response. I believe my eloquent response mentioned something about requesting that God kiss my ass. Being told that God chose you for this just causes more downward pressure, more burden, and the implication that if we are feeling low that we are not only letting our child down, but letting God down too. That’s just what we need. When a parent of a child with special needs is feeling low, this does not help. We are already burdened, stressed, worried & probably feeling horribly inadequate. AND another thing…it also implies that God deliberately chooses to create children with disabilities, some of them living in pain or unable to voice their pain…and I’m sorry if my beliefs don’t line up with yours, but my God doesn’t do that crap.

“You’re so strong…I don’t know how you do it. I could never do it myself!” Well, we’re exhausted. Not feeling so strong. What is our choice? Sit back & do nothing? No, we either have to rise to the occasion or fail our child, period. It is true that we have to fight for just about everything a typical child gets handed to them: proper medical care, a Free and Appropriate Education, recreation opportunities, being part of a community, etc, etc, etc. And I’ve got a little secret for you…WE ARE EXACTLY LIKE YOU. We just got more than we bargained for. And I wouldn’t change my life or Thomas for ANYTHING, and I mean that. We don’t feel strong all the time and we get tired of always having to be strong and the thought that we are going to have to be strong for the rest of our lives is a bit overwhelming. And…realize that by saying you could never do it, you are really selling YOURSELF short.

“God doesn’t give you more than you can handle”. What a bunch of crap. Really. This one is one of my least favorites. Some parents have WAY more than they can handle. Trust me. The statement is categorically untrue. And saying it minimizes the trauma & stress of the person to whom you are saying it. Saying this to a parent who is near the end of their rope only accomplishes one thing: it makes the person saying it feel better. Because being on the receiving end of that statement when you aren’t “handling it” makes a person feel like they are FAILING COMPLETELY, even more than they were before they opened up to you about something shitty going on. This statement also completely separates the person saying it from the person hearing it. The underlying message is: “Thank God I am not you.” And my personal favorite response to this statement that I heard at my support group: “Well, I hope that God can help you handle a broken nose, because that’s what you’re going to get for saying that to me.”

Okay, I’ve told you what not to say, or at least what to consider if you are about to make one of these statements to an overwhelmed parent of a child w/ special needs. So what should you say? Here are some suggestions:

• Instead of “God chose you for this,” how about “God is with you every step of the way.” Even better: “God will be with you, and so will I.” Or, in honor of that awesome older mom that helped me: “Look to the light. There will always be darkness. Look toward the light.”

• Instead of ‘You’re so strong…”, how about, “It must get tiring/overwhelming having to handle all of this. Tell me more. Do you have time for coffee/lunch/drinks/a manicure?” or “Can I bring a Netflix & brownies over tonight after your kid goes to bed?”

• Instead of “God doesn’t give you more than you can handle” when a mom tells you about an overwhelming, unjust, or infuriating situation, how about “That really stinks. And to be honest, I’m not sure what to say to you right now. I wish I did. But I’m here and I’m listening, and you’ve got a terrific kid I’d like to get to know.”

I know it is scary not knowing what to say to us. I’d rather that you say something awkward than completely dismiss me from your life because you don’t know what to do. And please believe me when I say that the “things not to say” are always said with the best intentions. I just wanted to take the opportunity with this audience to give you some food for thought.

Autism Understanding & Acceptance 2013, Day 27: Why we’re lucky

There are some symptoms of autism with which we do not have to contend, most blessedly. Thomas sleeps through the night. This is HUGE. He’s always been a good sleeper, and when I hear stories of parents going for years without a full night’s sleep, I simply cannot imagine the exhaustion.


We also have a gentle boy who treads very lightly on the world. I don’t believe he’s ever broken a toy, and when he does get angry, his attempts to act out physically are so minimal that I actually have to turn my head so he doesn’t see me grin.

He is a good eater. He just doesn’t like combined foods, like casseroles, chili, soups, etc. He also eats just one food at a time on his plate, and heck, I know TD (Typically Developing) people who do that, and who also don’t want their food to touch on their plate!

We are lucky in very many ways, but I believe that one of the most important ways we have been lucky is our access to 5 years of full-time ABA therapy. He has been under the supervision of Carl Sundberg, BCBA-D, since October of 2006. He attends Carl’s therapy clinic, The Behavior Analysis Center for Autism (BACA) full-time. (www.thebaca.com) For those of you who have been along for this whole ride, you may recall a statement I made about miracles happening after weeks, months, and even years of dedicated, HARD work. Thomas’ progress with the BACA has been nothing short of one of these miracles. Seriously, families who know what ABA can do have moved here from across the country and in some cases from around the world for their child to be at the BACA!

Walk in this center, and you feel that you have walked into a special place. The love & dedication to their clients is palpable. Kids come out of their shells; they blossom because this place is designed to meet their every need. Each kid has a therapist assigned to them (two actually: one in the morning, one in the afternoon, and then during mid-day hours the kids rotate through lunch and group activities tailored for their particular needs) and a program is written specifically to address their deficits. Undesirable behaviors are not punished; instead, good behavior and following direction are enthusiastically reinforced which is WAY more fun and interesting than the alternative. The child learns that those “undesirable” behaviors don’t get them what they want, and they eventually fade away. Sometime I may have to blog about the Eagle Shriek of Thomas’…blessedly, those days are over, thanks to ABA. He can read thanks to ABA. He can tie his shoes thanks to ABA. He can add & subtract thanks to ABA. Just about every skill he has learned is thanks to ABA.

I could go on & on about the BACA & its staff: all the wonderful angels that have worked with Thomas through these past years. So for those of you from BACA who are reading this, THANK YOU. I literally am getting misty-eyed as I write this. Thank you, to all you miracle workers.  

Yes, that is Thomas, front & center in their conference table promotional material.

Autism Understanding & Acceptance 2013, Day 26 - Potty Training

Autism Understanding & Acceptance 2013, Day 26


Potty Training

I won’t go into explicit detail here, out of respect for Thomas, but I will provide enough detail for you to have some insight into how long this life skill can take to learn, if it is ever possible to learn.

Yes, I said “if it is ever possible”, because some kids with autism are never able to be potty trained. Most learn it eventually, some don’t.

Seven & a half years old: that’s how old he was when we could finally say he was fully potty trained – during the day. It was a LONG haul. And unlike many of the skills he has now (reading, adding & subtracting, tying his shoes, etc.), I taught him this. Granted it was with lots of help, but I – and Thomas – did this!

“Number one” was not so difficult a skill to learn. That being said, it was done by about age 6. However, BMs were another matter entirely. He absolutely did not want to poop in the toilet. I think perhaps it was scary. Again, I’m not going to go into great detail here – maybe I’ll leave that for this future book I’m being encouraged to write! Suffice it to say, while nowhere near as stressful as trying to brew my own goat milk yogurt (thank you to Wendy for commiserating with me today about that ridiculousness!), there was a point after about 2 years of sitting in the bathroom with him and encouraging him to go that I thought I was never, ever going to leave the bathroom. I was just going to stay in there for the rest of my life. Thankfully that was not the case, and by 7 ½ years of age, we no longer had to buy diapers for him during the day. Whew!

Nighttime was also a different matter, but by age 9 we no longer had to buy Huggies Goodnights anymore! We still have a few accidents, especially if he’s sick or really upset (or even occasionally if he is SO engrossed in his playtime downstairs that he forgets), but it is now the exception instead of the rule. Rock on, Thomas!

Autism Understanding & Acceptance 2013, Day 25

Stimming

This is another symptom or behavior that goes hand-in-hand with autism much of the time.

As you can see, he is HAPPY while stimming. Again, if you observe Thomas currently for more than a few moments, it is likely that you will see him flipping a plastic bracelet (like those LIVESTRONG bracelets…and hey, if you feel like giving yours away now, I know someone who would love to have it!)

I don’t know why he does it. People ask me why he stims, and I guess I don’t really need to know. It does something for him, and falls in the category of “If it doesn’t kill him or hurt him, well…okay then”. You’ve got to pick your battles. It keeps him happy while we are out shopping. It keeps him happy during church. On the other hand, we do have to make him stop in order to attend to a task, to listen to instructions, and to participate in an activity. He is capable of that.

I sometimes join him flipping bracelets. He’s really quite talented at it – I cannot possibly duplicate what he does. But when I try, he peers at me, fascinated, with those big brown eyes of his, and I know he knows I’m connecting with him on his terms.

As Rob & I have thought about this, we realize how much we ourselves “stim”. I twirl my hair and crack my knuckles. I like the way my hair feels and I don’t even realize I’m going it when I’m twirling it. And I’ve caught myself doing a little verbal stimming (scripting!) lately…can’t seem to stop saying under my breath “Ship my pants? I can ship my pants right here?” (If you haven’t seen the K-Mart commercial yet, go to YouTube and search “Ship my pants”.) Rob twirls his socks in the evening while watching TV. Everyone stims in some way: tapping a pencil, doodling. It does something for us. So flipping his plastic bracelets does something for him.

Some people work very hard to rid a person who is autistic of their stimming. My thought is: when they need to attend to something and the stimming is getting in the way, then yes, it would be good to be able to stop and attend. Otherwise, I have to believe that somehow it is organizing thoughts, or helping make sense of a situation, or calming, or a mental escape from a situation that is over-stimulating…something. And who am I to take that away from him? It’s part of who he is.

Instead of stopping him from stimming when we are out in public, I ignore the looks and concentrate on how happy he is, and tell him out loud how happy he and how good he’s being while mommy shops. At the very least, I am always smiling at him. And here’s the clincher: people’s reaction to him seems based on how I’m reacting to him. So if I’m okay with it, they are okay with it. And most importantly, he has moments during the day when he is not being fixed or messed with or redirected…he’s just being THOMAS, and that’s a pretty darn cool person to be.