Autism with a side of seizures.

In April I noticed J having these episodes were his eyes would roll into the back of his head and he would go limp for 3 to 5 seconds. As they seemed to happen more in the morning when he was still tired from waking up, Lance wasn’t really noticing them in the afternoons when J came home from school. Over the course of two weeks they started to becomes more frequent, I was keeping track of them, Lance had started seeing them in the afternoons and the school confirmed he was having them there as well. It came to a head the Friday morning of his first field trip. I almost keep him home as he had 5 incidents, 2 of which were more pronounced (one where he fell and one where I was lucky enough to have my arm around him to catch him as he dropped). As we had already been monitoring for two weeks, I was already planning on calling his doctor. We were able to get into the clinic the following week where our doctor referred us onto the neurology clinic as she believed from our description that J was having seizures. At first, neurology wasn’t going to be able to get him in till the end of August. That was NOT going to work as they were still steadily increasing but our doctor was able to at least get us scheduled for an EEG the next week.

An EEG is an event for any child, it is a huge ordeal for an autistic child. We had to keep him up till 11 the night before and get him up early the following morning so he would be tired at the appointment that afternoon, so no naps. J did really well with all of this, I on the other had was craving a little shut eye. We packed for J’s needs like we were staying overnight. We had extra clothes, a blanket, pull-ups, wipes, 4 different snacks, a cup for water, several books and his iPad. From all this he only ate one snack and only needed his blanket and iPad but better to be over prepared then not enough for J. The tech that conducted the EEG was amazing with us, she worked with us to get J comfortable to the room and the bed she needed him to lay in in. IMG_20170502_134404Lance was nominated to lay in the bed with him and we were able to get him settled and watching a movie quietly. It was then finally time to start attaching the 26 or 29 ( I can’t remember) electrodes which also entailed wrapping his head in gauze. This ordeal required both Lance and I to hold J down in the most comforting way possible (which is by all means hard as crap). It started off pretty rough, but got progressively better as J being tired was on our side. This process took 20 minutes (would’ve taken a little less had he not be able to reach up one time and pull a few out)  and then another 20 minutes for the reading to take place. Finally the tech said we were done. I asked right away if it was a complete reading because I needed to start preparing myself right away if we needed to do this all again but she said yes, it was an excellent reading. Thank gosh!

BUT it was also an abnormal reading. Nothing we weren’t already expecting. Our doctor called us the next day with the basic understanding that the neurologist analysis concluded J has general epileptic form and we would be starting him on Keppera used to treat epilepsy. General epileptic form is characterized by general seizures with no apparent case. They impair consciousness and distort the electrical activity of the whole or a larger portion of the brain. Based off our at-home research we think J is having both atonic seizures aka drop attacks or petit mal seizures aka absence seizures. Drop attacks cause the muscles to go limp were the body may slump to the ground, whereas people experiencing absence seizures typically appear to stare without moving, lasting less than 15 seconds. These can be mistaken for daydreaming.

We started his meds last weekend, so far okay. There have been days that he has had 5 or 7 in the morning before even getting on the bus. These moments are awful and I am on my toes more now than ever before with J. One minute he is fine and like himself and the next second he can slump over on me. This mean is we can’t leave J alone. Even running upstairs or into the other room because we forgot something might be an error as we don’t want him to fall and hurt himself. I’m thankful that he can bounce back from them so well and that beside being a bet sluggish, the meds haven’t really affected his demeanor. I’ve been able to hold myself together as a whole even when there are times I want to fall apart because of this new unknown for J but that just is not an option. The hope is that the meds will help reduce that amount of seizures and even the duration, then we can wait till his August appointment. This first week they seemed to remain the same until Friday and Saturday which showed signs of improvement. Either way we have to give the meds a full two weeks to settle in his body. If there are no great signs of improvement we will have to double the amount given and push for neurology to get us in sooner.

Ah, the joys of parenthood.

 

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Our Autism Is…Age 6

  • a pop-tart and glass of chocolate milk request each morning, J hardly ever deviates from this. We have surprised him with a fruit smoothie a couple times now and it was a success.  I’m still insistent on my wine though…white zin just so you know.
  • still not being potty trained. Our biggest nightmare ever! He could care less about being wet and I won’t even mention his way of getting rid of a BM!
  • flapping. J flaps now more than ever, especially when he is excited.
  • still having to ask for hugs and kisses but there are times he’ll actually squeeze you back instead of just draping his arms over you.
  • participating in J’s first recreational activity, baseball! He’s still unsure about it but we will keeping trying as long as he does (aka no meltdowns).
  • also on the waiting list to get J into an adaptive swimming lesson. Hoping it is worth the wait.
  • J’s insistent and constant request for screen time. We regulate it but his knowing the sign for movie and iPad though helpful is also a pain in the ‘bleep’.
  • teaching J to wait patiently and calmly for screen time by means of a resource learning clock (remember the ones from elementary school). He truly is making progress here, even if he does ask every 2 minutes for it. We are teaching him time and patience to wait. Speaking of time, is it wine-thirty yet?!?!
  • not attending J’s first school music program. It was both sad and a relief. Knew that he wouldn’t be able to stand still throughout the entire program but I so appreciate that his school team worked with him at every practice, trying to get him invested. Alas, he just wasn’t ready for that yet.FullSizeRender4
  • (speaking of school team) having the best school team ever for J! I can’t begin to describe my gratitude for his teachers, paras, therapists and bus aides. I can only hope that we can have them all again next school year…I will beg on hands and knees if I have too! I wonder if they like wine???
  • J’s face still being as sweet with the most softest and kissable checks ever!
  • taking J on errand trips has become a little hazardous. Though his loves them, if we go by a place that he wants to go to but isn’t our destination (or gosh forbid we go in the opposite direction than what he wants), a kicking, yelling, pulling meltdown may ensue. That is why we now have an arsenal with us when we leave the house.
  • when leaving the house, do we have…
    • fruit snacks, check
    • something to drink, check
    • phones charged, check
    • iPad as back up, check
    • a Disney Cars book on stand by, check
    • the Penguins movie in the car dvd player, check
    • alternate routes picked for destination, check
  • J learning to almost jump independently. He has to get the knees bouncing a few times before an attempt is finally made. It’s pretty cute to watch.
  • starting seizure medication for episodes that J started having a few weeks ago and waiting patiently to get into the Neurology Clinic to find out why exactly. (More to come on this later.)
  • no more bedtimes stories or snuggles. J likes to be put to bed, after his usual crazy bath time extravaganza with Dad, and left alone so he can look at his books the way he wants to without Mom interfering. I’ve literally been told ‘bye’ when trying to partake. Rude!
  • at times, aggression. This is the worst part of J’s autism. It is without understanding or consideration, it happens in the blink of an eye and when it occurs it is vengeful. Even though it occurs when he has become upset, because he does not know how to regulate his emotions, it can be extreme and at times very different to handle. Patience is a must for Lance & I and redirection for J. It is a trying concept to explain to J that it is okay to be mad but you can not grab, pull, push, kick or bite. It will come to him…I hope.
  • on a lighter note, having J recognizing letters, numbers, colors more and more. His imitations have come a long way this year in kindergarten and he is getting better at writing his name and continuing the process to read.
  • continuing to use J’s augmented communication device but again with the help of school he is learning more syllables and signs and better means to communicate. Best of all he calls me mom now.
  • being sick and tried of Disney Cars!!! How we started this obsession again, I don’t know. I guess he can have the Cars as long as I have wine! Cheers Everyone!

Dad’s Take – Healthcare

Where to begin? Ever since Thursday, I’ve spent a lot of time thinking about the passage of the American Health Care Act (AHCA) in the House of Representatives. I’ve actually spent so much time talking about what I’m thinking about that Hali encouraged me to write a post for the blog. As the parents of a child with special needs, we have a lot of concerns about what the passage of this bill means for J and for our family.

So before we dig into this, let me put my cards on the table. I’m a fairly liberal person, and in terms of healthcare, I am very much in favor of a universal healthcare system.  I understand that this would be a drastic change from our current system, but the economic trends that we’ve been seeing in this country (income inequality, reduction in workers bargaining power, and rapid increases in automation) are likely going to result in exponential increases in unemployment.  That means we are going to see a huge increase in the number of people that need quality healthcare that cannot afford it. Something needs to be done about the current system, but the AHCA feels like a dozen steps in the wrong direction.

That being said, I understand that discussion about healthcare and politics in general is a very volatile subject.  So I will do my best to present my views using the facts that we know about the bill and what I think is a likely course for future events (assuming the bill is not drastically changed by the Senate).

Let’s start with the big issue relating to J, pre-existing conditions. The AHCA rolls back protections for people with pre-existing conditions by saying states can now allow insurance companies to charge people with pre-existing conditions higher insurance premiums. The states do have to set up high-risk pools to do this, but the higher premiums could still price people out of insurance entirely. The AARP reports that high-risk premiums could reach as high as $25,700 per year for people in the high-risk pools. In 2011, the Department of Health and Human Services estimated the number of people with these types of conditions was approximately 129 million Americans.

There’s no clear language dictating what would be considered a pre-existing condition, likely to leave that decision up to the individual states. As someone who had to navigate a maze of red tape just to get some of J’s therapy coded and funded correctly last year, I’m not very optimistic that autism or ASD would stay off of a list of pre-existing conditions. To be blunt, I don’t have faith in my state’s legislature to protect my son and my family’s interest. We live in a state that has refused to take advantage of the Medicaid expansion detailed in the original Affordable Care Act.

I don’t think it’s a huge stretch to imagine if this bill is signed into law, Nebraska would quickly take advantage of removing as many federal requirements set in the ACA as possible. J would currently be protected against this pre-existing conditions clause, as we get insurance through an employer plan. But President Trump and Congressional Republicans have repeatedly said that the AHCA is Phase 1 of their healthcare plan. Unless the future phases are just more tax cuts and defunding of ACA components, these changes could easily be applied to employer plans in the near future.

Moving past the pre-existing conditions, let’s look at the rest of the bill and its effects. I’ll have to use the Congressional Budget Office review of the bill in its original form, as the new version with its amendments was passed before the CBO review was revised (more on irresponsible governing later). The next major piece of the AHCA is the placement of sick people into high-risk pools to reduce premiums for everyone else. While this sounds fine in theory, a Washington University study found that establishing high-risk pools would save the average person $300 a year in premiums, but they would require $18 billion each year to properly fund them. The AHCA offers nowhere near this amount ($130 billion over 10 years plus an additional $8 over 5 years). That $3.4 billion per year shortcoming may not sound like much in this context, but it will mean the world to the people unlucky enough to be placed in a high-risk pool.

The AHCA also removes the federal Medicaid expansion from the ACA, and goes further to cut traditional Medicaid by $839 billion over the next 10 years. Just looking at the ACA Medicaid expansion, 10 million low-income Americans will lose the funding for their healthcare. According to the CBO analysis of the original bill, an additional 14 million Americans will no longer be insured by 2026. While some of those uninsured would be by choice (since it will no longer be required to purchase health insurance), most would be losing coverage or not have the financial ability to purchase insurance. The CBO also estimates that insurance premiums would actually increase until 2020, then decrease (based on current projections, not necessarily less than today’s averages).

So why do all of this? Tax cuts. Specifically, tax cuts for the wealthy. The AHCA includes approximately $765 billion of tax cuts over the next 10 years. The vast majority of the cuts will go to individuals earning over $200,000 per year (or couples earning more than $250,000). That’s the part that really gets me. My son’s access to affordable health insurance is being put at risk not for a misguided philosophy, nor as a side effect of a bill to help millions of other Americans, but to give money to the Republican Party’s top donors and members (and President).

This sort of reckless, irresponsible governing drives me crazy. The people elected to lead this country just forced through a bill that will harm exponentially more people than it will help. They cry foul at the Democratic Party for not casting a single vote for this bill, ignoring the fact that the bill was only worked on by Republicans who did not request any Democratic input. This bill was slapped together in 4 months, the ACA took 18 months of bipartisan deliberation and concessions. NPR reported that the AHCA had only a 17% approval rating, yet the House Republicans rushed the bill through prior to a recess instead of crafting a better bill. The President and the Speaker of the House are playing with people’s lives like this is a sporting contest, and they just wanted to score some quick points.

Now I am aware that most of the pundits, analysists, and even some Representatives say that this bill will be massively reworked in the Senate, so the major issues with this bill are not a problem. But if this is true, why pass the bill in this form at all? If the pre-existing conditions language will be removed by the Senate, why would the initial hold-outs in the House vote to approve the revised bill if they wouldn’t vote for the original AHCA? Are the people like J being treated as political ammunition just for a chance to stand in front of a podium and say “We did it”? I’m not sure how I feel about that, but I do know that it doesn’t feel good.

If you’re still with me, thank you for reading this all of the way through. Like I said, I know this is a touchy subject (obviously for me it is), but I appreciate you taking the time out of your day to let me voice my opinion. I don’t think it was made clear enough in the rest of this post, so I want to make sure that you know the way I feel about these issues is not just because I am concerned about J, but because I am concerned about everyone. I believe that no one should fear getting injured or sick for financial reasons. I don’t want anyone to feel like they can’t afford to go to the doctor, regardless of the reason. I feel that the American ideals of life, liberty, and the pursuit of happiness includes having healthcare. I don’t just care about myself, my wife, and my son. I care about your children, your grandchildren, your parents, your grandparents. I care about YOU.

I’m not sure all of the issues with national health care policy and Autism can be wrapped up in a tidy little bow. But I do know that J’s condition and treatment are always on my mind. Until this week, wondering if he’ll have health insurance was not one of those concerns. I would very much like to go back to not worrying about his health insurance so that I can focus more energy on worrying about therapy goals, summer lesson plans, and finding fun activities for him. I hope that I can realize that reality very soon.

How to Interact with a Non-Verbal Autistic Child.

Based on my last posting I thought I should provide some basic information on how those who choose to do so can be present and interact with a non-verbal autistic child. I understand that over time I have become used to it, but then again he is my child. However, it has taken A LOT of trial & error and always will. I share this information to advocate for our son as we do in all matters, but with this information, to educate on what is appropriate, to show how to be supportive and to encourage compassion towards those living with autism.

A Beginner’s Guide to Interacting with a Non-Verbal Autistic Child:

  1. You’ll need to literally pop your safe space bubble to start your interaction. Start with making a statement instead of a question. But since asking a question first may be more comfortable, ask one pertaining to what they are currently interested in or involved in followed by a statement. ‘Is that Lightening McQueen? Oh, I see him and Mater too’ or ‘ Is that Dory and Marlin? Just keep swimming. Just keep swimming’. (J just might just show you the sign for cars or fish.)
  2. Allow time for them to respond. They have a lot of sensory input processing through their mind and they are attempting to sort through it all. You may have to give it a minute or 3 and ask the same question again, move onto something else that you think they might be interested in or you may simple have to let them be & just sit with them, they do enjoy the company of others.
  3. Don’t take it personally if they walk away or end up not including you. Wait a while and try again later, you may have to track them down in order to do so as they have wandered away. They may also just want their own space, may not want to interact right now, may be off in their own mind replaying their favorite movie or they may be over stimulated with what the environment is at the time.

IMG_3236Basically you’ll need to do your best to interact with all autistic children. Just because they are processing things differently and may not give a response back now or from a prior time does not give you an out to stop trying. They are aware of all social interactions and it will take time for them to starting interacting with you independently. Making the effort will pay off for you and the child, ultimately the relationship you choose to have with them. Interactions correlate with being present.

Note: the starting information from this post was sourced from www.kevinmd.com