Equine Therapy and Why We Love It

My daughter has been a rider with Riders Unlimited Inc. in Oak Harbor since June 2014. It was determined that Karys had some developmental delays in October 2013. She was officially diagnosed with Autism Spectrum Disorder in August 2014. She struggled with echolalia, speech delays, social delays, among other things. I noticed very early on that she has a love for animals. Equine therapy has a lot of physical benefits for individuals with disabilities, but I chose to sign Karys up because of the social and communication benefits I knew it would have for her. 

Karys on her first day at RUI, June 2014

I did not grow up around horses, and do not consider myself a "horse person", so I was a little apprehensive signing Karys up for the program. However, I was quickly reassured by the staff's attentiveness and expertise. They have taken Karys in and taught her all the basic riding techniques, as well as leading, filling water buckets, feeding, etc. As Karys gets older, I expect us to get more involved in helping out with chores at the barn on a regular basis.

Ready to ride, June 2014

I will never forget the look on Karys's face on her first day. She was in love. It is difficult to recognize some of her delays when she is interacting with the horses, because she opens up around animals. Another rider about a year older than Karys has been riding on the same day and time since Karys started in the summer of 2014. Karys immediately started saying "hi" to the little girl and walking right up to her and waving. I don't think I had ever seen her interact with another child like that before. She had always kept to herself or played in a corner reciting her movies over and over. 

Leading Sprite back into his stall after a session

Since Karys started equine therapy (among other therapies), she has become more social, more engaged, and her speech has dramatically improved as a result of that. She still has some delays but she is making great progress. Animals bring something out in her that people never could. 

Karys in her favorite RUI shirt

Riders Unlimited offers spring, summer, fall, and winter sessions for individuals with disabilities. According to their website, The program is "open to individuals four years old and older who have been diagnosed with a disability and referred by their physician to participate." They also offer riding lessons open to the public.

Karys and Sprite

RUI is hosting a fundraiser later this month: the annual Runners for Riders 5k Costume Run/Walk. The event will be held at 8:30 a.m. at East Side Park in Fremont, OH on October 31. Even if you don't want to participate in the run/walk, please wear your costumes and come cheer us on!

RUI Costume Run/Walk, October 2014

For more information on RUI, please visit their website or their Facebook page. 

My Two Soccer Rockers

My two soccer rockers did great at their first game last night!! I am so proud of them. I'd been waiting for this day since before they were even born. If you would've asked me a year and a half ago if I thought Kai would ever be able to play (let alone at 3 years old), I would've said no. If you would've asked me 2 weeks ago if Karys would be able to play I would've said no (which is why I didn't even sign her up officially and she doesn't have a team shirt). But here we are!! That is why you NEVER SAY NEVER with autism. Or anything.

Karys was only good for one quarter, but Kai hung in there the entire game. He hated sitting out every other quarter! Karys was mad because she said she wanted the ball! (I told her to run faster).Most importantly, they had so much fun. Their coach is so patient with them and really is exactly who they needed as a coach. I told him about Karys's diagnosis (because it's rather obvious when she wanders off the field), but not about Kai's. Kai is his little buddy and coach calls him batman because Kai wore his batman shirt to the first practice. I don't know how we keep getting so lucky meeting the right people for us. This has definitely been a year of many positive changes for us.

LOTS of changes for Team K lately!

There are LOTS of changes going on for Team K lately!

I made the decision last week to pull Karys from dance this year. It wasn't an easy decision, but I've known for quite awhile that it was not her thing. It's not what brings her joy and I don't want her to do anything that doesn't bring her joy. I danced for 10 years, Karys has been dancing since she was 18 months old. But she is at a point in her communication now that I was able to ask her if she likes dance and she said "no, all done". I verified her understanding of my question by asking her if she liked horse riding (equine therapy) to which she promptly responded "yes".

If you saw my post yesterday, you know that we are in the process of switching speech therapists. We are also coming up on Kai's last session with PLAY Project. He has made so much progress over the past year and a half so I am okay with this transition. He has reached FDL 6 with very few holes in the first 5 FDLs. I think he will continue to progress on his own just fine. Karys STARTS PLAY Project in October and I am THRILLED about this. It's something she's needed for a long time and the grant we recently received will pay for an entire 9 months of this therapy for her, which is a load off my shoulders.

Another new thing happening for Team K is that Kai has his first soccer practice EVER next Wednesday and his first game September 15!! I am so excited to see how this plays out since he will be the youngest in the league. I have no doubt he is ready though. Karys may even decide to play next year. She asked for a pink soccer ball the other day and said she wanted to play!

I will continue to keep you updated on all the exciting things happening with Team K this year!! :)

A thank you letter to my daughter with autism

When people meet our family, it is not uncommon for them to peg my daughter as having autism and my son as being neurotypical. (Surprise!) they are both on the spectrum. But I'm not surprised by their "guesses". My son does now appear to be neurotypical and has made so many improvements over the past two years I cannot even recall all of them. He was a fully engaged baby, but by 18 months he had lost his "ability" to make eye contact. He would not respond to his name, lacked joint attention, and did not play with toys appropriately (i.e., he would only throw them over his head onto the floor repeatedly). He had five words at 14 months and by 18 months, he had lost all of them. Thanks to early intervention services, he started receiving speech therapy at 20 months and PLAY Project at two years old. By 20 months, he had learned how to sign for "more" and by 2 1/2 he had started picking up words again. By age three he was enrolled at the local public preschool where he receives speech therapy and has the best teacher and paraprofessional I could ask for. He is now one of the most engaged, talkative, and social children around. He has very few autism "markers" remaining.

I attribute his progress to his amazing therapists and teachers, myself and my parents. What I hadn't realized until this morning as I was watching home videos from around the time my kids were diagnosed was how much my daughter contributed to my son's progress. I get asked a lot if I think her autism caused his delays. Meaning, he was not able to learn from her like most younger siblings learn from their older siblings. I have always known that was never the case because my daughter was never non-verbal. My son would have picked up words from her; they just would have been used in inappropriate ways (i.e., echolalia). He never once mimicked her echolalia or gibberish. In fact, she has had the opposite effect on him. In every single home video I watched, she was engaging him, making him laugh, forcing him to interact with her. In those videos, to an untrained eye, they appear somewhat neurotypical (albeit with limited or no language), constantly smiling and laughing. They have always been close and they have always engaged with each other more than with other children. The difference now is that my son has taken those skills and generalized them to other settings and with other children. My daughter has not.

It is so difficult watching my son catch up to my daughter in almost every area. At this rate, he will pass her soon, if he hasn't already. In fact, just this weekend I caught him brushing off her request to play along with her scripting routine. The rate of her progress is nowhere close to his. It's hard for me to even admit that. Partially because I don't want to believe it's true and partially because I wish I had done more sooner. I wish I had started her on PLAY Project right away (2 years ago). I wish I had started taking her to private speech right away (2 years ago). I assumed (because she's so smart) that she would pick everything up right away and start making rapid progress. And while I know she has made progress, it wasn't at the rate I was expecting. And maybe it was naive of me to expect anything, but as a parent I think you can't help yourself. I know by most standards she is considered high-functioning and she has overcome her echolalia for the most part, which was a huge hurdle. But I see neurotypical kids her age playing on the playground. I know how far behind she still is. I see all the progress she's made but I also see how far she has to go.

Of course I am thankful for all the struggles we get to avoid, but there are also a few things we still struggle with daily. My daughter is about to start PLAY Project and private speech which I hope will both be positive experiences for her. Regardless of the challenges she will continue to overcome, I hope she someday realizes what a difference she has made in her brother's life and in his developmental progress. They are too young to ever remember what life was like for us these past two years, but I will remember. And I will say to my daughter: thank you.

I will know I did everything I could

I've been told a few times that I do so much for my kids or that I am doing everything I can, or even occasionally that I might overdue it (me?). Within a few months of them both being initially evaluated, I enrolled at a university and am working towards a Master's in Special Education - Autism Spectrum Disorders. I wanted to learn how to help them myself and understand therapist/doctor speak (which is still challenging after 2 years). I keep them fairly busy with school, play dates, trips to museums or the zoo, trampoline parks, speech therapy, play therapy, festivals, water parks, equine therapy, etc., etc., etc. If there is something going on within a 50-mile radius of us, we usually try to go to it. Not just for recreational purposes, but because I try to make up for the therapy I can't afford or don't have time for by providing them with "life-enriching experiences". At least, I hope that's what they are. And I'm also having fun and creating memories with my kids in the process (even though after most outings I come home completely exhausted and at the end of my rope). I try to help them learn through play, but at their age and developmental level, even therapy is play. They don't know that it's even therapy. They don't know that every child doesn't have a Ms. Marsha or Ms. Stacy that comes to their house to "play". They think these women are just their friends (which they have become), and I'm going to keep letting them think that as long as possible.

I do cut myself a little slack.  There are only so many hours in a day I can spend researching, reading, learning. And my brain is only so big. I'm not sure much of what I read anymore even sticks. But hopefully, some things stick long enough for me to try them out and if they're successful you can bet your drum kit I won't ever forget it. I accept that I can't study to be an SLP, OT, teacher, MD, etc. all within the next 5-10 years. Luckily, we have found really good ones so I don't need to! But do I kick myself for not reading more parenting books prior to becoming a parent? Yes! Particularly of the non-baby variety. I wish I'd read more of those too, but what I really wish (and what I think a lot of parents don't do) is that I had learned more about raising KIDS. Not babies, because most of those things pass within a year or two. But KIDS. I wish I'd read more about what happens over the next 16-30 years AFTER the first two. Developmental milestones, behavior management, emotional regulation, etc., etc., etc. It would have been nice if my eyes had crossed over the word "autism" even once during my undergraduate studies in human development. Then I might have had a head start.

I hope people know that I do not go to these great lengths because I "expect" my kids' autism to go away. It's not because I'm embarrassed by them. I couldn't care less what other people think (unless they have something positive to contribute). I try so hard because I don't want them to grow up and still have challenges and struggles and for it to be MY FAULT and then have to live with that for the rest of my life. And by MY FAULT, I don't mean that I gave them their autism (although, genetically speaking, I could have). I mean I don't want to look back and KNOW that I could have enrolled them in more therapy or a better school or read up more on interventions. I want to know, without a doubt, that I did everything in my power that I possibly could. And if they still struggle, we will keep dealing with it, and I will be at peace because I will know that I DID EVERYTHING I COULD.

Notes: There are some days I do NOT do everything I could. Some days I just watch Netflix and drink wine. :)

10 good things about being an autism parent

I am not an optimist by nature, so writing this post is somewhat ironic. But if you are an autism parent, you already know all the hard things about it. You don't need me to remind you (although I would love for others to get a glimpse of what we go through). So, instead, I came up with 10 good things about being an autism parent. Undoubtedly, there are more than 10 good things. You just have to be in the right frame of mind to notice them. So, I hope this list will provide you with a refreshing break from the hard things, if only for a few minutes.

1. Your child is ______(insert best trait here). Everyone has a good trait, a talent, a gift. My daughter is an empath (odd for an ASD, I know). She is empathetic to the point of getting her own feelings hurt for someone else, or crying their tears. My son is athletic. Neither of my kids have motor skill deficits, but my son is particularly active and talented when it comes to sports. He is also a sore loser, but I will not elaborate on that here. (Good things, remember?)

2. Your child does not ask to go to the toy store every time they see a commercial on television. I don't have any neurotypical children but I do know some and every time a commercial comes on or they see another kid's cool toy, they ask their parents for one. Not the case with mine. I don't think they even knew toy stores existed until the past few months when I've been bribing them with potty prize trips to the store to pick out a new toy. I used to have to use picture symbols to prepare them for trips to the store. Now, they understand if I just say "we're going to the toy store", but they still don't initiate the idea. Which is perfectly okay for my sanity...and my wallet.

3. Your child doesn't start talking about Christmas 5 months in advance. My kids don't know what Christmas is unless I show them pictures from past Christmases. They don't know they can ask Santa for presents (I should have started taking advantage of that year's ago). My son has recently (this week) started telling me he wants to be a skeleton for Halloween, which is a HUGE breakthrough. My daughter has still never asked for something like that in advance.

4. Your grocery list could be shortened to 10 items and the kids would be perfectly okay with that. Hot dogs, chips, carrots, yogurt, chicken nuggets, eggs, toast, crackers, ice cream and french fries for my kids. I, on the other hand...

5. Your child does not know what Disney World is. Enough said. 

6. Your child does not repeat cuss words. Unless they have echolalia, as my daughter did. But by some miracle, she never picked up any bad words. I know some 5 year olds that know dirtier words than even me, but my kids appear to still be fairly innocent.

7. If they have OCD tendencies, like my daughter and so many others do, they can buckle themselves in their booster seat when you forget. (This has only happened a handful of times I swear...okay maybe 6). Neurotypical kids would start bouncing around the car yelling "I'm free!", but kids with autism can't help but stick to the good ol' routine.

8. You save money on buying new movies because they watch the same one over and over. You better just pray they don't get stuck on one while it's still in theaters.

9. Birthday parties are cheap and easy. Kids with autism are, by definition, not great at making friends, so the invite list is usually limited to family. Luckily for my kids, I love throwing extravagant parties and inviting everyone and their dog anyway.

10. You don't have to stop what you're doing every 15 minutes to take them to the bathroom because they're probably not potty trained anyway. And you don't have to sit in the bathroom for hours on end entertaining them while you're trying to potty train them. Of course the drawback is that you're paying out the ass (literally) for diapers, but time is money too...right?

What would my neurotypical child be like?

That is the question most autism parents have thought but never said out loud because they're afraid it means they don't love or appreciate their child as they are.

My kids were both diagnosed on the mild end of the autism spectrum. I will admit, it makes my life a little easier and my worries a little less than what they could be. But they are still on the spectrum, and so I do worry. Sometimes I feel guilty for worrying so much about my kids. Like a parent's level of worry should depend on which end of the spectrum their child falls. I know there are individuals that struggle far more than my kids with communication, sensory issues, motor skills, etc. so sometimes I tell myself that my kids must not be on the spectrum. They can talk, they have no motor skill deficits, very few sensory issues. I tell myself I am imagining or exaggerating the whole thing and they should have never been diagnosed or that they have "outgrown" it. I tell myself that they seem almost typical....almost. But what I've learned is that it doesn't matter which end of the spectrum they are on. There is not a competition between individuals on the spectrum to see who needs less or more therapy or who can speak the most words or have the least amount of meltdowns. We all have our struggles and our journeys. We have all had to adjust our lives to accommodate therapies, behavior issues, and our finances, among many other things. I am allowed to worry.

I worry the most on days I get to witness neurotypical (NT) children talking and playing. When you have never had a NT child, you don't know which milestones your child "should" be reaching based on their age because you've never seen it firsthand and after a certain point you lose track of the milestones charts the doctors give you and you start using your own imaginary, slow-motion chart. The older my kids get, the easier it is to see the developmental "gap" between them and their NT peers. I watched a video of a NT girl today, and just watching the way she talked and interacted with her parents was hard to watch. She went to a mall with her mom in the video and didn't have a meltdown. Her mom never had to drag her out of a store. The daughter never screamed or punched or head-butted her mom. She didn't wander off, sending the mother on a full-blown search crawling under garment racks and behind dressing room doors. I looked up the girl's age, hoping she was at least 6 or 7. She was 5. She acted much older than my daughter, but they were the same age.

It's hard to watch NT kids the same age as your child and realize how much distance is between them developmentally and behaviorally. It's hard because you spend all of your time being so proud of your child for all the progress they've been making the past few months/years and then after watching a 5 minute video all you can think of is what you must be doing wrong. And then you feel guilty for comparing your child to another child, because you know you shouldn't. But still you wonder, what would my NT daughter be like? I know you cannot separate the autism from the person, and it is not the "quirks" I struggle with. I love my daughter's personality and her quirks are what make her her. It is her inability to regulate her emotions, or to verbally express certain things to us, or to manage her auditory sensitivity that I struggle with (and by "I", I mean "her"). Those are the parts of her autism that make our lives difficult. I'm tired of the meltdowns, the scratching and hitting, the crying and screaming. And not because it makes my life more challenging, but because I want to know how to help HER life be less challenging. I don't want to trade kids with anyone or make my kid "better". I want to see the smile on her face that I see on NT kids' faces. Not that they are happy all the time and not that she is never happy, but you can see on their faces that they are not struggling internally with anything. On the other hand, you can see on my daughter's face that she is fighting a big battle almost daily. And any good parent hates to see their kid struggle. Especially so young.

So even though I hate to admit it, yes, there are some days I wonder what my neurotypical daughter would be like. Not because I don't love my daughter, but because I DO.