My Asperger’s Kid and Boy Scout Camp

Asperger’s and Boy Scouts

It’s been a busy summer and with all the back and forth (visitation schedules) updates here at the ole M&M have been slim. It has felt like the summer has simply been rushing by. We have had some things kiddo has been prepping for this summer, summer camp and an upcoming trip to UVA to the Kluge Clinic to see the Developmental team whom we haven’t visited in a very long time. That is later in July, earlier this month he met with a doctor who evaluated him and mentioned his hypotonic legs. She asked if he was in Occupational Therapy for it, which I said had to wait because as his dad puts it “you do ‘your’ therapy on your schedule, I will do mine on my schedule.” So OT had to be discontinued through summer with a holding spot for the fall.

So our big thing for the summer, since therapy seemed to be pretty much out of the Aspergers and Boy Scoutsquestion with the back and forth schedule (we live about  an hour and a half away from each other), was the preparations for the Boy Scouts summer camp trip to Goshen’s Camp PMI.

Discussions had started about Camp PMI before Christmas that year and man did they rev the boys up about it! They talked about the previous groups trip and how many badges and pins they earned and how much fun they had. There were pictures of the time at camp and all the activities. By the end of the presentation every Webelo (because kiddo is a Webelo) wanted to hike the 100+ miles over the Shenandoah right then and there and go to camp, including my kiddo.

I spent the preceding months talking with kiddo about all the ins and outs about spending time away from home, he had a overnight with a friend (his Aspie buddy) and he had a camping trip with Richard. We discussed that Richard nor I would be able to be there for the ENTIRE week, but would be able to come for the second part (half of Weds-Fri) and he would have to be there with his leaders until then. Everything he said was fine, he wanted to go to camp.

Last week we started getting his gear together for camp and the proverbial S#*! hit the fan. He realized he would be at camp during the Fourth of July. (That was the first thing) Then he realized he would miss his show, Adventure Time on Monday night (second thing). Then he said he would have to go straight to dad’s (his father) and wouldn’t even be able to come home AT ALL before leaving to go to dad’s for two weeks.

He started to mope around and say he didn’t want to go, I was torturing him. UGH. We talked a lot about it and his interest would go in and out as we went over gear for the trip. At times he seemed a little excited. So we pushed forward. Richard had been a scout, his father a Scout Leader, and both his brothers had been to Goshen. I know that I cannot hold kiddo to the same standard, but I want him to have the same experiences if possible. Richard tried to talk about all the amazing things he would do to amp him up, which helped minimally.

So the morning came for us to drive out to Goshen… a long 3 hour trip through the aspergers and boy scoutsmountains of Virginia. But we arrived as the second group from his troop and when he got there he was really happy and excited. The day was hot and actually pretty nice. The camp staff was on what seemed to be a perpetual caffeine high which make them very entertaining to the kids, and really fun. We did the tour around the camp and by the end, kiddo didn’t even see us anymore, he wave goodbye as he walked away with his troop and I thought “ok, that’s it, he is fine.” It hurt a little, I wanted my baby to need me a little more, but then heading home I thought that it was a really great thing, he could be with the other boys and was ok.

Except he wasn’t.

I wanted him to go to camp because I thought it would be really good for him to be with other kids (though he isn’t social) and possibly build some bridges with them over things that he is interested in like the things that they do in Boy Scouts (Archery, Knots, Camp Fires, Swimming, Fishing Etc.) and things he is really good at. When he is skilled at something, he is proud of it and he actually likes to share it with others, even his peers. I thought this would be a great opportunity for him to do that.

We dropped him off on Sunday, by Monday night I got a phone call, my kiddo choking on his tears “mom… I just really need you… when are you going to come, will you come tomorrow, please come tomorrow?” I said that it would only be Tuesday and we could talk about it, but he was pretty upset.

HERE, exactly HERE is where I am not sure if I made the right choice. I have this fear. It started with my fear of letting him go because he has Asperger’s and I don’t want him to get made fun of for “being weird” or acting odd or anything like that. I want him to feel like any other kid. I know he is not just like every other kid, but he wants to be right now. One day I hope and pray that I can make him understand that his Asperger’s is a beautiful part of him and makes him unique and part of what is great about him. But right now, he doesn’t feel that way. Right now he feels isolated and angry a lot of the time. So I try to protect him. Firstly- I was scared to leave him there to begin with, but he walked off just fine and was happy and that was great. But then he called and he asked me to come. I think about it now and think I could have said “no.” If I had said no would he have been ok? Or would he have started on a downward slope, something the pack leaders didn’t know how to cope with? If I had said no would he have started to hurt himself (because that is still a pretty normal behavior for him when he becomes very upset) and do other things that the other adults and kids didn’t understand? I was afraid of what would happen if I said no. So I didn’t.

Lil sis and I packed up the car and headed out to Goshen on Tuesday. It poured rain the entire way on and off, making the trek last nearly four hours. When we arrived, we checked in and were told where the boys where- archery. Nifty! So we headed in the direction of the archery field. Lil sis slipped, fell in the mud and hit her knee. She was wet, muddy and very unhappy. By the time we got to the tents where archery was, she refused to come in but just stood there with her arms crossed. I think she had had enough of that day.

Kiddo didn’t know I had arrived, he was about to take aim. So I watched as he shot the bow, two bulls eyes out of five! I talked with the pack leaders who said he was doing ok during the day, but nights were hard. His buddy and tent-made came over and said that he really missed home and said he was really sad that he would going to miss me and Richard so much because he would be leaving to be with his dad right after camp. He also said that he wasn’t sleeping (kiddo has a hard time just sleeping at home) because he hated the cot. The pack leaders said a kid in another camp was waking regularly screaming with night terrors which I am sure didn’t help either.

Kiddo turned off the firing line and saw me and came running. My aspie doesn’t hug me… ever. Yesterday he hugged me SO big and tight I thought my eyes bulged a little. He sat down and his eyes were red and watering but he was smiling.

I spent the next few hours going to the rest of the program day with the pack and Lil sis. I think I may have a few badges coming my way soon :) I talked a little here and there to kiddo about how I would like him to stay at camp and I think he was doing really well and that I think he can stick it out. I even tried to compromise saying that we could leave on Thursday instead of Friday because I didn’t want him to miss out of all the badges that he would be earning.

The programs were done for the day and it was time for dinner. I had packed dinner for Lil Sis and I and we met the boys at the mess hall. That is where it all went to pot.  Kiddo asked his leader if we could leave the mess hall earlier to pack to leave. I said, “but buddy, you are gonna stay and then I will come tomorrow to stay for the night like we talked about, remember?”  He lost it, he started to wail that he hated it there and he couldn’t stay any longer. He went over to the tree and started to hit it and pull bark chunks off cutting up his hands in the process. I tried to pull him over and he started to flail his arms, by then the boys were all in the mess hall. I told him that we could leave earlier, but that I needed to go back home to take his sister and get things done. I could come back, but he needed to stay right now. He tried to throw himself on the dirt and I pulled him up. I asked him if we could go to the mess hall, he needed to eat and he calmed down enough to go in but he would look at me.

In the mess hall he hardly ate anything and went in and out of bouts of gagging tears, at one point he arched his back and scream “I just want to go home!”  He looked at me and said “why don’t you want me?”

The scouts finished up in the mess hall, his pack mates were starting to look at him with real concern. I told his leaders that I was going to take him home. I didn’t think it was good to leave him in this state with… well, anyone really, nor did I want all the boys to think he was weird or odd or whatever because he couldn’t cope. They thought he might do fine if I just left, I said yeah… but he might do much worse over night and I just can’t leave him like that.

So kiddo got his way- I know that is what all the folks at the camp thought and probably others. I even second guess what I did. Maybe he might have done ok had I not shown up. He wasn’t sleeping, I think probably he would have burned out one way or another. Maybe he just wasn’t ready, perhaps he never will be. That is the thing that worries me.

The Sensory Integration Roller Coaster… Literally

The Amazing Return of Our Friend Dyspraxia…

It is officially the summer time. The kiddos have been out of school for an entire week now and its been… raining!!! Almost the entire week, can you believe it? So we have been waiting and waiting for a clear day and we managed to squeeze one out alexandmeandsnoopyesterday. The night before me and the man got all the things ready to go and decided that we were going to utilize the season’s passes that we purchased the year before on Halloween at the Halloween Haunt which was a whole other story (oh man was that a story). It was guaranteed to be amazingly hot weather and zippee rain, YES! THAT my friends IS summer. I didn’t think at all that we would be thinking about sensory integration the next day…maybe I should have.

So, we didn’t exactly get an early start, yeah the kids dragged their feet and dammit if making a family of paleo meals isn’t a little more time consuming than I thought it would be. But I was certainly not paying $8.50 for a water at the park, no siree Bob. So we had the red cooler packed to the T with goodies including bacon brownies from the night before, thanks to Practical Paleo (YUUUUM!). I even had large mason jars of sun tea! So at the break of NOON (hahaha) we were off!

But hey, seriously, we have season’s passes and we are about 30 minutes from the park..its cool.

intimidatorSo we started with a blisteringly slow start (40 minute wait) but fun ride down White Water Canyon then off to the roller coasters! A few coasters then to the water!!! We spent a good part of the day in the water park area and decided that we were going to spend the end of the day riding coasters to dry off… yes!

It was a good plan, right? Sure, sure. All except dyspraxia. But that didn’t become a problem until about 2:30am. During the rides… I was nervous because kiddo has NEVER braved the BIG coasters before and he looked nervous as all get out, like he looked like he was going to Ralph. But he had a ball! So, I wasn’t too worried, I mean he even said to his sister “It wasn’t as bad as you said at all!!!” Everyone had a great time and crashed hard in the car.

Then we got home… kiddo could not sleep… at all. He said his body wouldn’t stop moving. He said it was jumping around, it felt bobby and wobbly and it scared him. I told him (by 12:30am) that it was ok, it was just because he had been riding the rides at the park. I laid down with him for a while. He fell asleep… or so I thought. I went to our bed. 2:34am… he came to our bed, crying… he was still moving about and bobbing. I told Richard it was his turn. He got up and started to scold him for being up. I got up and said “Don’t yell at him!” Then he looked a little defeated and led him to his side of the bed, kiddo hopped in and Richard grabbed a pillow and went upstairs. Kiddo did end up sleeping the rest of the night. I guess I anchor him from bobbing. Richard on the other hand did not sleep as well curled up on the sofa. Poor guy.

Kiddo is back to normal today, dyspraxia now dissipated, but we have all agreed that maybe we need to do the bigger coasters earlier in the day in the future.

In all seriousness though, dyspraxia is a serious issue which effects not just motor coordination, but a host of other issues including social and emotional components. For more information about dyspraxia please visit Dyspraxia USA. Kiddo was diagnosed when he was very young and something that we haven’t thought about for a very long time, but something to start talking about with the developmental peds again when we visit UVA later this summer. Sometimes you get the little kick in the pants… or in the hubby’s case… knock out of bed as a reminder. It could be one of the things that could be effecting his performance in school and I am a little glad that we got that reminder so we can talk about it during the summer to address it and hopefully see what educational supports we can get in place for the next school year.

Of course… at the very least… rollercoasters before bedtime are OFF the list COMPLETELY.  :)

Support Not Judgement: The Autism Community

Last week whilst on the twitter, I was reading a post from another blogger regarding parenting children on the spectrum. It was from an adult autistic who was raising children also on the spectrum. No doubt an excellent perspective to be able to understand children on the spectrum and how to best serve them.  I don’t know how many times I have wished that I could REALLY understand how kiddo felt when he was having a meltdown because it just didn’t make any sense to me at all, and if I could feel it too I could really help him.

So while I was reading this parent’s writing regarding neurotypical parent’s rearing behaviors and what they do to their children, ie therapy and nutritional interventions etc, I felt a bit attacked and really didn’t know how I felt about it. I felt both as if I should go on the offensive regarding the measures I have taken to help my own kiddo to be more successful in life thus far, but then also that I needed to take a more listening ear. I am after all not autistic. So I was compelled to really take several days to allow my feelings about it to sink in and really generate a response to not just any one particular blogger, but all parents of children on the spectrum whether they are nuerotypical or autistic.

1. Being a parent is hard.

            Being a parent is hard work. Babies are born and they cry a lot and it doesn’t stop for a long time. Throw into that some complications like prematurity (DING! DING! DING!) and development issues or illnesses, then you have got a super bumpy ride. Again, it’s hard. So what do parents do? They call mom or their sister who has a couple Kids at Chatham, Virginiakids…”what did you do when Suzy spit up pea green in the middle of the night?…” Etc. You get support from where ever you can. Lots of moms go to new moms groups to meet new mommies and make new mommy friends. It’s called support. It’s something that women have done for a very long time (and men do it too, but it usually involves some tools and beer or flaming bar-b-ques) The point is that we look for support and not judgment. Because if we go to a support community and are looked at and question as to why we are the way we are or are doing what we are doing, we will not return, thus are unsupported. When people are vulnerable and in need of help and support and are judged instead they turn away. A supportive community should NOT be this way. So being a parent is hard, but we should help one another, not judge each other.

2. The Autism Community is HUGE

            20 Years ago there was next to zippy Autism community. Temple Grandin discusses how her doctors talked with her parents about institutionalizing her, which happened a great deal with many autistics. That is not the case today, but it doesn’t mean there isn’t a long way to go. BUT the Autism community is comprised of not only adult and younger autistics, it is comprised of so many others that support them, parents, grandparents, cousins, uncles (etc), professionals, organizations and more. With this, there are many different perspectives on how best to support autism through life. Everyone, EVERYONE has an opinion. And taking me back to my first point, simply because your opinion differs, does not make it  ok to judge another person about their opinion or choices for therapeutic or nutritional paths. Again, this is a community and we are ALL learning so much every day, whether we are autistic or not, on how to best support one another and those whom we are trying to best serve.

3. Don’t Hate the Messenger

            Our Autism Community is again… HUGE. Just about as far and wide as the community reaches is as wide the range of approaches to supporting those with autism. I do not believe it does any one person or group any good to discount the work of another group or person even if the opinion is differing. Again, it is a community and if we best want to support one another and others, we have to approach support in a non-judgmental way.  With that, appreciate that you may not always like the messenger or person who has an opinion, but it doesn’t mean that their opinion or approach is invalid.

The world of the internet allows us to have the opportunity to reach across vast spaces, not only geographically but socially as well. It means that we are able to “meet” so many people that can enrich our own experience and offer a different perspective, if we allow it. I think these opportunities are immeasurable.  While I cannot possibly know what it is like to be autistic, I can learn by being open with and listening to autistic adults about their experiences. I think that within our community the professionals such as medical, therapeutic professionals and organizations can benefit from listening to autistic adults and also from parents who are raising their children and what supports they are struggling to get into place for them and perhaps what worked and did not work for them.

Each day, as participants of the autism community, we have the opportunity to lift others up in a positive supportive way. Sometimes these opportunities are as small as a Google search that lands on your blog. What do you want your reader to find? I know that I want to try to offer support, kindness and direction. I know that I do not have all the answers, but when I can I point those to the right direction in the community. That is the wonderful thing about having such a community- knowing who you can point someone to and tell them “I don’t know, but I know someone who could really help you.” We have the chance each day to make a difference, let’s do it.

Friday Friends: Do Not Try This At Home Via S.R. Salas

BlackandWhiteCoverToday we welcome out very first Friday Friend, the wonderful and amazing Renee Salas. We have had the privilege of being able to “meet” Renee through the wonderful world of the internet and learn about the her life, work and voice as an adult autistic. She is incredibly modest (way to modest in my opinion!) and surely an example of what Temple Grandin says “I am different, not less.”

Renée is a writer, blogger, public speaker and advocate for Autism Acceptance and the rights of all people with disabilities. She is the author of Black and White: A Colorful Look at Life on the Autism Spectrum. She is a Partner in the Virginia Board for People with Disabilities, Partners in Policymaking advocacy program. Because much of her current work focuses on the educational needs of students on the autism spectrum, Renée is a member of the College of William & Mary Neurodiversity Working Group, and actively supports the Williamsburg Montessori School and the Peninsula School for Autism in Newport News, Virginia. You can follow Renée on her Blog, via Twitter @srsalas13 or Facebook.

We chose this entry from her blog as our first Friday Friend (and she agreed to allow us to share it) because it is a very poignant description of her experience growing up autistic and self acceptance. We feel that her journey is something that is one that so many can learn from and she is so brave to be able to really share and discuss her trials along the way, something not all of us can do! Thank you again Renee for join us this week and for all your continued hard work!

DO NOT TRY THIS AT HOME

 

I grew up believing my emotions were scarce. That my feelings were hard to come by. That I was the coldest, hardest person on the planet. That I was bad.

Unlikable. Unlovable.

For those of you just joining me, I was a late-in-life ASD diagnosis. Basically, for a little over 36 years I felt like I was not worthy of friendship, well, maybe at times, but definitely not worth loving. Like I didn’t deserve kindness from others because there was no kindness in me.

Why?

Because for 36 years I watched human interaction. I observed relationships between and among other people and I didn’t get it. I acted like I did, and I was really good at it. But I didn’t get it at all. People looked so happy, or sad, or angry, or excited about… Everything.

So much drama!

So full of joy and wonder at the smallest things:

flowers blooming

babies cooing

leaves falling

parties

engagements

impending parenthood

It was really strange. I saw these intense - to my way of thinking - reactions to life occurrences, and I just didn’t get it. What was all the fuss? What was the big deal? Flowers bloom every spring, it’s nature. Leaves fall from the trees in autumn, it’s what they do. So I could never quite relate to people’s feelings or understand what I considered to be their over-emotional responses. And because of this, I always considered myself unemotive.

Unfeeling.

Take for example, relationships. A friend’s boyfriend would break up with her and she would be a mess. Devastated. Crying, angry, forlorn, hurt, so many emotions from such a thing. So he didn’t want to be with her anymore, what’s the big deal?

Move on.

I never really had boyfriends, not until I got much older. One or two may have broken up with me, but it didn’t affect me much because of my detachment issues which I talked about here. I just understood it as being over. It didn’t matter to me why. I didn’t feel jealousy or loss. Loss of what? Someone who doesn’t want to be with me? It would seem to me that’s a gain, but I know my perspective is considered to be a bit off (winking).

Then people began saying things about me. Calling me names:

cold

heartless

hateful

insensitive

ruthless

And I began to believe them. I thought they were right and that the things they were saying were true. How could they not be? I didn’t feel the way they felt. I didn’t react in the same manner they did. I was numb to them – I found their emotions to be illogical, uncalled for and extremely anxiety-inducing. I was frustrated with their care and compassion. I couldn’t stand what I perceived as weakness.

I was numb.

But Then…

Something occurred to me that was later solidified by spending several months reading blogs authored by autistic people. There was a pattern. I found myself reading about their feelings and emotions. And I was confused. Autistic people aren’t big on the whole ‘feelings thing!’ Right?! I mean I’ve been observing NTs my whole life and there’s no comparison! No correlation! So what were all of these autistic people talking about? I thought I’d found home, but here they were talking about their lives and how they were richly colored with a variety of feelings and emotions. Do I not belong here, either?!!

And then I would get

irritated

confused

angry

stressed

nervous

anxious

sad

…reading about autistic people deeply feeling their emotions. How come I wasn’t? I knew I wasn’t completely devoid of feelings - I do find I don’t experience sympathy and empathy as strongly - but how were all these people, both autistic and non-autistic, feeling so deeply?

And then I began re-reading my blog. And parts from my book - searching for the feelings. And while I wrote about not experiencing emotions as deeply, I was in fact describing the very feelings I felt to my core when hearing of others’ feelings.

?!!

I spent 36 years trying to experience emotions as a NT might, and I always came up short. I was feeling – Deeply. I was experiencing emotions – Greatly. Just not like NTs do. And that’s why

I was a failure.

I was incapable of expressing emotions the way NTs did, therefore I wasn’t experiencing feelings either. Right? Obviously something was wrong with me. I tried so hard to be and feel and act like something I wasn’t, so the only possible outcome was failure. Not on the outside, of course, I was masking big time, which I talk about here, so I fit in just fine. But on the inside I was

F – A – K – E

And I hated myself for it. And I hated that everyone could feel and I couldn’t. And I hated that there was yet another part of me that was lacking - that was less than everyone else. And I became angry because I thought everyone else must be faking it, too. And then I was just… Angry.

All the time.

A New Chapter And ME.

I self diagnosed when I was 37. At 39 I received a formal diagnosis of Asperger’s Syndrome. I did a lot of reading and research on autism because of Bella and Bas, too. But it took reading the information from autistic people to discover I am not devoid of feelings, I just experience them differently than the NT expectations I kept trying to live up to!

Epiphany!

I don’t see things the way non-autistic people do, I don’t experience things the way they do, so why on Earth would I expect to feel things the way they do?!! Well, because I didn’t know differently. I was an autistic kid raised into adulthood as a NT. I grew up in a world that I never fit and that never fit me. I learned feelings, emotions and the reactions to them, by observing non-autistic people for more than three decades and trying to mimic them. I didn’t know it wasn’t suppose to work that way. That my feelings were suppose to come from within, not be taught by outsiders.

The most gratifying part was accepting that my feelings had always been present, and that they were valid and appropriate for ME.

If I were to continue comparing myself to NTs, I would always come up short. Just as they would come up short when comparing themselves to me. So I don’t compare myself to NTs. And I don’t let anyone do it to my kids either. What would be the point? I’m autistic and I want to be. Am relieved to be. My kids will grow up autistic because they are autistic. I will not raise them to fit a societal ideal. To force and bend and shape them so that they may appear outwardly ‘normal.’ So they can pass. Why? So they can spend half a lifetime wondering why they’re not worthy of true friendships? Of love? That they’re not good enough, because they were raised believing their feelings were inappropriate and their emotions non-existent? That they would have to deny what is a natural way of being by working overtime to blend? And by trying to meet unrealistic expectations? Just like I did?

No.

R.O.C.K. (Raising Our Celiac Kids)*and gluten-free kids

ROCKSo there has been a good deal of gruff in the Celiac and gluten-free communities lately about some well known television personalities making fun of Celiac and those with gluten-intolerances not just regarding adults but also gluten-free kids. When I say “gruff’ I don’t say that in a way that I am taking it lightly, in the contrary, I take it very seriously.

One of the most recent occasions was one that fellow blogger The Gluten Dude made pretty infamous with petitions and all. It was regarding an episode of the Disney Channel show “Jessie,” in all counts a pretty lame show that my kids actually enjoy watching. Imagine my surprise when I realized that they had an upcoming episode with a character with a gluten-intolerance who was being made fun of and bullied. If kiddo saw that he would be horrified. We are still in a place where he at times really hates being gluten-free. Who knows, maybe he always will. Sometimes kids will mention things at school, very snarky comments on why he can’t have a class cupcake or the like. He has to deal with that, and he does it ok. He has snacks in the classroom and he gets an awesome home made lunch. But if he were to see it on tv too, it would hurt. My kids shouldn’t have to see other kids be made fun of for an actual life threatening condition on a television show they watch. Its ridiculous. So the gluten-free community took a stand that day (see here, details from The Gluten Dude) and continues to do so.

Its not a issue of us parents being too soft with our kids, it is educating people about Celiac Disease and gluten-intolerance, what it is, how it effects someone with the issue and how serious it is. We are not picky eaters folks, nor are our children, they are gluten-free kids for a reason.

With that, being a gluten-free child can be difficult especially when they have daily battles of possible bullying, or just not knowing any other kids who are gluten-free. As an adult we cope with some of these issues by reaching out to another adult and talking about it, getting advice. But if you are a child, what do you do? That is what R.O.C.K. is (Raising Our Celiac Kids)*and gluten-free kids is for.

R.O.C.K. was founded by Danna Korn in 1991 after her son, Tyler was diagnosed with Celiac. At the time the resources for a parent with a CHILD with Celiac were few and far in between, so she did what an extremely motivated mom would do, she made one. Today R.O.C.K. is a national organization with local chapters across the country. The focus of R.O.C.K. is the children, but of course the parents get support from one another, sharing resources and information in the process. Most chapters hold monthly R.O.C.K. Parties which are meetings for kids and families to gather, share GF meals or snacks, share resources, lean on one another and learn some new information. The goal is to help, educate and have fun!

Recently, I started our local R.O.C.K. Chapter in our local area- R.O.C.K. Fredericksburg/Spotsylvania. We will be having our first R.O.C.K. Party coming up on June 29th at the Salem Church Library in Fredericksburg, Va 22407. If you are local, we hope you can join us! Check us out at our Facebook page to get the latest news!

If you struggle with helping our child cope with a gluten-free lifestyle you may find some of Danna Korn’s books very helpful. Gluten-free Kids: Raising Happy, Healthy, Children with Celiac Disease, Autism and Other Conditions by Danna Korn is a great starter book to get you going.
It has loads of information from coping methods to education to what is safe and what is not safe to eat. Its a great resource to have if you have a kiddo who is gluten-free.

For more information about Celiac Disease and gluten-intolerance visit Celiac.com.

For information about R.O.C.K. and to find your local chapter visit the here!

The EDCD Waiver, The Best in Disability Health Care?

I have been hesitant to talk about kiddo’s therapy services because I have been more than just a little frustrated about the situation. I talked a little with a friend about it on Twitter and she was just as appalled/angry about it, so I felt like I was pretty justified in my anger, not that I didn’t feel I was before.

So now I am going to actually talk about it because I feel like there are some big issues and problems with the “system” and because of these issues my kiddo and I am sure many like him can not get better or the best care that is available.

 

The Issue

 

The Benefit:

The Elderly and Disable Consumer Directed Waiver. A very helpful and sometimes life saving waiver for families to be able to use as back up and sometimes the only form of insurance for their children (Medicaid) for high cost and catastrophic care. Additionally, the waiver is not income based, so the parent can be working and the child with the disability can still qualify for the waiver. If the parent has private insurance, the child can receive the parent’s insurance and have the Medicaid as a secondary. In our specific case, kiddo’s medical care is still ongoing with various issues like surgical procedures which we would still be responsible for 20% of  the remaining cost after private insurance in addition to weekly therapy 1-2X a week of co-pays totaling well over $200 a month in out of pocket cost only in co-pays for therapy which does not include any additional medication and those surgical procedures. Without the EDCD Waiver we would not be able to manage the cost of kiddo’s medical and therapeutic care. Period.

The Negative:

There are a handful of medical and therapy offices that accept Medicaid. Most of them you have to drive to a major city (unless you live IN one of them) to get to them. The offices that DO accept Medicaid usually have very long wait lists if they are reputable offices. (As parents we do our research, right?) What is left are what I like to call Medicaid warehouses: offices with low quality health care, untrained staff and very high turn over. BUT, these are the offices that you can get appointments in.

But I have private insurance…..

What’s that you ask? What if you also have private insurance? Of course, you are a hard working individual and pay monthly into your company’s policy, you should be able to utilize it and not have to get low quality care for your child! Except, no. IF your child is on the EDCD Waiver and has Medicaid, you can ONLY go to a Medicaid provider. It is ILLEGAL for an office to provide services to you or your child and NOT bill to Medicaid first since your child is on Medicaid.

WHY?! We work hard, we pay into our insurance policy to be able to provide good care to him. We are willing to pay the out of pocket co-pays to be able to get him BETTER therapy services. BUT, no… unless we forfeit his waiver, we can not get him into better therapy offices, those who except private insurance but NOT Medicaid. It makes no sense.

I contacted my local Congressman about the issue, I got a generic letter response back- a proverbial pat on the head. I will not stop there. My son will not get substandard therapeutic services. He is currently on a waitlist for ABA Services though a Medicaid Approved in-home provider, its been an EIGHT month wait. He will be starting with a new Occupational Therapist, another wait-listed office a much better non-Medicaid warehouse type office.

Over the last year at his current therapy office they have turned over three Speech Therapist and just as many Occupational Therapists for him. He can not make progress because he is constantly trying to make a new connection with a new person, something that takes him several months. Yet the office discharged him from services stating that he was doing remarkably well.

Upon evaluating at his new therapy office he completed his own (in addition to mine) sensory profile. It was… remarkable. He definitely needs therapy services to help him modulate his sensory function in daily activities. He still becomes incredibly overstimulated with sounds and textures and marked very low on some of his vestibular testing. Its not that he is doing so remarkably well that he was ready for discharge from Occupational Therapy, it was that his old office either didn’t want to deal with ME or didn’t know how else to help him. They did tell me upon discharging him however that I could buy some cds online and continue his Occupational Therapy work at home on my own. Thanks.

Our children’s needs

So, here it is. We have children who have a multitude of needs, medical needs, therapeutic needs, psychological needs. Some of those needs are very costly and we need some supports to be able to help us. The reason that systems are in place like these Social Services is to help when the over-riding costs are impossible to bear, when a family has to decide to either help their child get a service that could benefit them for the rest of their life or not because they can not possibly afford it. THAT is why the services are supposed to be there. But, when we work hard to be able to support ourselves and pay our own way and we have to choose one or the other, how do you choose? Neither is a good choice. You have no Medicaid for your child and some of the very expensive services that would be covered, are not and your private insurance does not cover them so they would be out of pocket cost especially in the case of many things related to Autism services. If you keep Medicaid and the EDCD Waiver, you can not use providers that only accept private insurance leaving you with in many cases limited, waitlisted or subpar healthcare and therapeutic options for your child.

What do you do with those choices?

Happy Mother’s Day… said the tired mom

So, I have this thing. Hallmark probably hates me, but I hate them too, so it works out. I hate many holidays, and I am not even so keen on my birthday. Why? Well, they are all so full of expectation, even when you try to just blow it off as “just another day” you have the well meaning friends and such who are all “sooooo, what is so and so gonna do for [insert holiday, birthday or anniversary here]?!” Then… well, you can’t help but start to think about it. Worse, you may even hear rumblings about what those well meaning people, ahem, loved ones, may INTEND to do, but it never really, well… manifests. So, again… holidays and the such, I just don’t like them. Now… the exception to this is the ones that I have control over, ie ones that have nothing to do with me being gifted or “honored” in any sort of way. I can throw one hell of a party for someone else and make em feel like a million bucks. And I don’t do it because I want someone to do it for me. Of course if it happened sometime before I die, that might be nice, but again its not why I do things for people.

So, then there is Mother’s Day. I told Richard all I want for Mother’s Day is to go to church in the morning (he was working) and then work in my garden. We are snug on cashola, so I said no extra money spent please… and no, that is not one of those “women mind tricks.” Did I expect the ABSOLUTE opposite of Mother’s Day? Nope. But that is what I got.

I headed upstairs, bright eyed and bushy tailed. A laid back Mother’s Day, wake up kids, make breakfast, go to church and relax. Yes. Or not.

“Morning!” Grumble…

“Could you please put your khaki pants on for church this morning?”

“Church!? Why?! Ugh! Khakis! I hate them, I am NOT wearing them. WHY DON’T YOU JUST LEAVE ME ALONE!?”

*sigh*

I went to go make breakfast. I had banana bread I had made a few days earlier, some fresh fruit from the farmers market and bacon from yesterday I had made, so I scrambled up some eggs with some cheese for the kids. I headed to the bedrooms and lil’ sis was in her pj’s on her bed playing with her toys.

“I told you to get dress for church..?”

“Oh. Sorry.” She sighed and rolled her eyes.

I looked into kiddo’s room, he was splayed on the floor naked except for his underware.

“I HATE pants, I will not wear them.”

“You know what guys… forget it. Never mind. It’s not Mother’s Day, it’s Sunday, that’s all, just do whatever you want.”

I went to the kitchen and toss their food on plates and put it on the table.

“Come get your breakfast before the dogs do.”

I walked downstairs and sat at my desk and just felt bad for myself. I admit I was grumpy for most of the day. Richard got home with flowers for me, his plan for the day with a card for the kids to sign. They were off playing with friends, he scolded them for being… unkind (I could use a number of other words here), but it didn’t really make a difference.

I didn’t get to church, it’s difficult to go to church with a preteen in her pj’s and a mostly naked 11 year old who refuses to wear pants. I spent the morning in the backyard pulling weeds in a very aggressive manner. Better the weeds than the kids I always say.

The larger part of my day doing the things that a mother does. I did laundry and cleaned the house, make meals for the kids, Richard helped with dinner. I got the lunches ready for the kids for tomorrow. Today is Sunday, tomorrow will be Monday. I am thankful that I am a mother and whilst I am grumpy that my kids really don’t seem to notice or appreciate now the idea of Mother’s Day or all that I do for them, I know one day they will. For now, I will wash their clothes and making lunches and keep my head down. Its my job.

Best Part of Waking Up

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Remember those Foldgers Commercials? You remember the ones…the alarm goes off and the husband gets up and heads to the kitchen grabs the can of mountain grown coffee, pulls the plastic lid back close to his face and takes a deep whiff of the heavenlyfolgers-coffee-in-a-can aroma just as the “best part of waking up…” really starts to kick in? Yeah? I do too. This wasn’t that kind of morning. In fact, my coffee didn’t even get made until after the kids were on the bus. Oh, but I wish it had been a “best part of waking up..” kind of morning.

Instead it was a freaking-out-milk-on-the-floor-dirty-clothes-wearing-preteen-tantrum kind of morning instead. I find this hilariously ironic because YESTERDAY Richard woke up with the kids and let ME sleep in and the kids woke up (like it was the Twilight Zone or something) before he was up, made their beds, ate breakfast and were completely ready to go way ahead of schedule. For me… not so much. I woke up early because I was gonna make it a mountain grown morning. Yup, I was feeling all sorts of motivated to make it a wonderful day, despite the fact that I habitually sleep an average of 4-5 hours a night (part of my migraine related issues). I decided to make french toast for breakfast with fresh fruit. I had some fresh bread baked from yesterday and thought it would make some killer french toast and couldn’t wait to try it. The kids would love it! (Who was I kidding.) So up I went, opened the bedroom doors “good morning sunshine!” Grumble, grumble….thats ok. I would grumble too. Off to the kitchen I go to get breakfast going. I start to clean the coffee pot for my mountain grown aroma to start, ohhh, I can’t wait! Coffee! In comes the boy…

“Mom, I hate this morning. Today is going to be bad. I just want to go back to sleep.”

“Huh, well I am sorry to hear it sweetie. But I am making you a delicious breakfast. Why don’t you try to keep to your schedule and breakfast will be ready in just a few minutes.”

“Gaaaaaah.”

Stomp, stomp, stomp.

In comes the girl, dressed and looking loverly in a cute skirt and top I recently bought her. I have a plate ready to go.

“Is this for me?” “Yup, you can go ahead and eat. Your brother isn’t ready yet.”

Back in comes the boy. This time dressed and grumbling. Now I have his plate ready. He walks up to me scratching voraciously at his cheek.

“What is here?!”

“What?”

“Here! What is it?!”

“There is nothing… I teeny little bump.”

“Well it itches, it hurts… I can’t… I can’t.., it itches!!!”

He proceeds to scratch at it so hard that I think he is going to break the skin. I tell him he needs to stop, and sit down and eat his breakfast. I should have known better. It was not the appropriate thing for me to say. He was obviously preoccupied with the bite on his face and it was the ONLY thing he was going to think about. So what proceeded was my own doing. It is also my own fault that I did not get my damn mountain grown aroma.

So, he sits down and the girlie is telling me in a very upbeat smile how tasty the french toast is. Her brother on the other hand is pulling his shirt over his face, tightening the seam over the tiny bite on his cheek. Then he pulls it off and rubs at his cheek. When I look at him he pulls apart the french toast, he takes a little nibble but goes back to the bite on his face.

Meanwhile I am getting school lunches together. I looked at the hooks where their lunch boxes are supposed to sit but are not because they did not wash them. I looked over and said:

“You guys need to get a move on so you can get those boxes cleaned so I can get your lunches packed.”

They proceed to yell at each other about who is closer to the other at the table and I say again louder:

“I said you need to hurry up and get those lunch boxes washed!”

The boy stops his bickering and face scratching jumps up from the table arms flailing tossing his large glass of milk flying to the floor and yells at the top of his lungs:

“FINE, I WILL WASH MY LUNCH BOX!”

… as milk drips off the table to the floor. Of course my reaction to this debacle was less than calm, I was pretty upset. At these moments I need to be calmer and cooler and its something I have worked on and gotten better at, but I think I could still use work. I was louder than I think I should have been, but honestly what parent doesn’t get angry when her kid screams at her?

I said, loudly (moderately yelled) to him:

“I told you to sit and eat your breakfast and hurry to clean your lunch box. I didn’t say to jump up and leave the table now. You know that.”

After that I said nothing because I knew that what happened was all due to him being upset to begin with because of the damn bug bite on his face and because I had ignored it to begin with it perpetuated the whole situation. I went and got a tube of hydrocortisone and rubbed it in his cheek and told him that that should help a little. Of course he said that he was certain it would do nothing. He refused to eat or drink anything for breakfast, but again, I sort of knew that was coming.

He went off to finish his bedroom which includes taking care of his lizard and I finished lunches. Before we leave he has to have his brushing and joint compression so I went to his room to do it and found his room a mess and he was wearing another set of clothing, dirty ones from the day before that he thought were more comfortable. AHHHH!

“NO. You have to wear clean clothing. This is not a compromise, you HAVE to wear clean clothes. Choose another outfit or I will have to choose it for you.”

He didn’t argue with me about it, but wasn’t happy.

I went to his sisters room to check on her as she was topping her cute outfit with a hideous hot pink cheetah print sweatshirt she has.

“Oh… why don’t we put on something, nicer… maybe something that… matches?” “Like what?” “How about this jean jacket, its really cute!”

So on went the jean jacket and she looked so nice! She refused to changed her tennis shoes, but I can’t win them all.

So then back to her brother, clothing changed and therapy done, we are finally out the door to the bus stop. The girlie is refusing to even look at me, walking ten feet ahead of me the whole way. She normally is a chatterbox with me and loves to be with me till she gets on the bus. So we stand in silence until I said finally

“Well, I am just gonna go because obviously you don’t want me here… unless you can tell me what the problem is.”

Finally after more prodding, she says under her breath that she hates the jacket. She said she prefers the cheetah print one. This is from my daughter who tells people I have no fashion sense. The nerve. Well, that’s just fine.. I will not send her to school wearing a cute outfit and an ugly sweatshirt. UGH.

The bus came and I got no hugs or kisses or “have a good day,” but whatever… I am a mom, I have thick skin. Plus I get to go home and smell my mountain grown aroma, finally.

goFyoself1

He is Ausome #AutismPositivityFlashBlog2013

I spent a lot of time this week thinking about last years Autism Positivity Flash Blog and the theme “I Wish I didn’t Have Asperger’s.” As I sat at my dining room table on Tuesday morning sipping my coffee after the kids made their way into the world, it hit me like a big cheese school bus: my own kiddo may have at one time searched that very phrase.

I think perhaps last year when thinking about that theme I did think about that, but it didn’t really click to me truly that he may REALLY have searched it. But he has his own computer, he Googles things all the time. He is wicked smart and when something like genetic engineering pops into this cranium, he Googles away and looks for answers. So WHY wouldn’t he search something like that?

This week has also been a bit of an eye opener for me because I have thought a great deal about my perspective as a Nuerotypical parenting a kiddo who can’t really know exactly how he feels. And to that extent, how can I write about 1000 Ausome Things About Autism? Do I have the right perspective to be able to talk about it? Isn’t that sort of like a man telling a woman what she should be doing with her reproductive organs? (I know, I know, that is a whole other can of worms to which you now sort of know my feeling about…) Different, but sort of the same.

Saturday is Doctor Who Day. Since every other weekend the kiddos are with the other parental unit, we have a makeup Doctor Who to watch. Yesterday we decided to do a Doctor Who-thon at Grandma’s house with BBQ and some yummy desserts I made. On the way home Richard and I were talking about the 1000 Ausome Things About Autism and as I poked at kiddo earlier in the week about it to get his thoughts, I asked him again while talking with Richard.

Kiddos first response, as always:

“Well I am glad that I am so much smarter than everyone else in my class….but that is all, there is nothing else…”

So Richard and I looked at each other and of course started to come up with things, not just for this blog post but because my kiddo is an awesome (AUSOME) kid and there are so many more thing that he needs to know that are great about him, that he doesn’t recognize. The thing is that most of those things are his quirky oddball things that are a result of his being Autistic, but that is what I love about him.

camo

So really to be more pointed than anything this is more 1000 Ausome Things about… my kiddo, because, I know my kiddo and I know he is awesome and his is autistic. So… if you make those connections, you could say that I am writing 1000 Ausome Things as well, if you choose because that is truly MY perspective.

 

  • Honest and straight-forward: Sometimes I envy kiddo for being able to just say the things he says to or around people without having any embarrassment about it. Of course, the other side of that is that I, as his mom am terribly embarrassed, but it’s ok, sometimes people just need to hear it!
  • Incredibly Smart and Pragmatic: I have never questioned his intellect. Even when he was speech delayed I could see his mind at work taking everything in, inventorying. When he is focused on a subject, he is THE EXPERT and he will teach, whether you like it or not.
  • An Engineer: Fine motor? Recently tested at a level of a 17 year old at age 11. Not an issue! The things he comes up with in his mind with building blocks and Legos blow my mind. He looks at the manual once and then goes on from there. Incredible.
  • So Mature: I never feel like I am talking to a child when I talk to kiddo. Sometimes I have to remind myself that he is only 11 years old. Sometimes I wish he could be a little ‘younger’ so that he could feel like he fits in better because I know kids feel like he sounds weird when he talks and such. But he is who he is and I wouldn’t want him any other way. He just fits in with a slightly brighter crowd.
  • Fast Learner: He can learn things so incredibly fast it babbles me. Video games of course are a no brainer and are SO not my area of expertise. I have heard the “mom just let your guy sit by a rock and I will go beat the level” more times than I can admit. But more than video games he picks up new things and just runs with them.
  • An Elephant’s Memory: While I know they say that autistic have issues with visual memory (and kiddo definitely falls within this category in school IEP issues) standard memory is not an issue. If you tell him you are going to do something, well by God you had better follow through with it because he is NOT going to forget. I love and hate this. I love it because he holds me accountable to my word, I hate it because sometimes things just don’t work out and that is hard.
  • Rarely Lies: Kiddo rarely every lies. I will not say that he NEVER lies because there is the occasional lie but not nearly the number of average lies you would expect from you average kid. If you ask him a question, for the most part I always expect the most blunt honest answer. If he says nothing, it’s because the answer sucks, but he won’t lie.
  • Loyal: Kiddo is incredibly loyal. He may have issues with social situations and may seem like he could care less about the people around him at times, but those are his people and he wants them to be cared for and respected. I think his loyalty is actually a form of his love.
  • Interesting: No matter how regimented we keep things to maintain our schedules, kiddo keeps things interesting because he is the most interesting kid I know.

I know that its hard now and will be for a long time for my kiddo to accept who he is and even longer for him to appreciate the things that I see in him as being the AUSOME things about him. I hope that projects like this Flash Blog and others can help my kiddo and any other kids, adults, parents, professionals or anyone in the Autistic community assure an Autistic person that THEY are truly AUSOME.

Autism Mom: Sometimes It Stings

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“Mom, you disgust me. I just hate you.”

I felt like I had been stabbed in the chest for that one moment when my eyes locked with his. I turned away very quickly as the tears welled in my eyes. We were on the way to the surgery center to check in and were a few minutes late. I suppressed the tears and forced a smile.

“Well kiddo, I love you and today is going to be fine, you’ll see.”

 This year has been a particularly rough year for kiddo not only in just dealing with autism issues with school and such, but medically as well. It’s been a little over a year now that kiddo has been gluten-free and with that we not only saw improvements in some of the depression and anger issues but it also took some of the bite out of some of his more intense sensory integration issues. But medically the biggest things we saw were that his weight not only stabilized but he started to finally begin to gain and grow and his reflux finally started to decrease without use of medication.

Since kiddo had been two years old he had had a feeding tube placed. He had reflux (Gastroesophageal reflux disease) that was so bad that it had severely damaged his airway to the point that he could not drink or eat and breath at the same time. So he stopped eating and drinking. Two weeks after his second birthday he got his feeding tube and for the next several years he was close to 100% tube fed. By the time he was in kindergarten we were at about 50% tube oral feeding, but he really needed to increase that. So he attended the Kluge Rehabilitation Clinic’s Encouragement Feeding Program at UVA.  Upon discharge he was at about 80% oral intake and 20% supplemental by tube.

For the following years, 6 years old to 9 years old, he kind of hovered in that 20% range. Whenever he would get sick, the weight would just fall off of him. We needed to supplement by tube to keep the calories on or he would lose too much. In 2011 he was diagnosed with Autism and we talked a great deal about his medications and diet. Over the last year and a half since the change in diet to gluten-free his weight stabilized and his GI and nutritionist both agreed, it was time to lose the tube.

So that was one procedure that we had to get through, unfortunately sometimes there are complications though. As one might expect, when there is a hole in place for 9 years, that hole does not want to close on its own. So after a month of leakage, we had to return to the GI, schedule for the first of two surgeries of this year.

The second surgery was something completely different and we found out it would have to be scheduled when he was examined for the first surgery. I was blindside by the news and tried to not let kiddo know that I was nervous/scared/upset.  I won’t talk about the details about the procedure, just to say that it was something more serious, because it’s a more private matter.

I did want to write some about it though because though I have really tried to just “get through,” it has been difficult. I can only really know what it is like for me in this situation, his parent. I can’t even fathom what it would be like if I was a child in his place because I am not autistic and my mind doesn’t work like his does. I wish I understood better and I am still trying to and I know that is only the best that I can do. So many things I wish I could know more to help him navigate this time better, but there is no real guidebook, each person and autistic is different. I continue to try to educate myself with friends, professionals and the experts themselves, other Autistics.

But I suppose what I did want to share with other parents is that it’s ok. There is a sting sometimes in being a parent to an autistic child. This year, going through these medical procedures, that sting has been very present. Kiddo has a very hard time understanding why life is so difficult just in general. Why people dislike him and why he can’t understand things the way others do. So when he has that already and then in goes a large helping hand of medical complications, my poor kid has too much to deal with. From my parent’s point of view, my kiddo cannot navigate these complex emotions and thoughts so he gets very angry and says and does things. Usually its blame and directed at me. That is hard. But I know the things he says are out of pain and fear and anxiety, not out of hate. I know he doesn’t know how to deal with what he has inside and needs to release it and I have to be able to let it slide off me because I know he loves me even though it doesn’t show in hugs and kisses. His love is a different love, but a love no less and I love him and will do all I can to help him get through this pain and fear to be sure he can be healthy.

And today, thank God, today my kiddo is healthy. With the grace of God yesterday’s surgery will be his last for a very long time. His doctor said he now is in the clear and looking very good. Now it’s just recovery for my grumpy kiddo and grumpy I will take :)