BIG News for the K's!!

It's been awhile! Take that as a sign that we have had a LOT going on in our lives. And I mean a LOT. As you know, the kids and I moved from Oklahoma to Ohio in 2013 to be closer to my parents. The kids' dad (my ex) stayed behind. But as of January of this year, after 4 years of separation, he decided to make the move to Ohio to be closer to the kids. So now we're the K's+J (sort of). I have to say, it has gone better than I expected. But it was definitely a life-changing move for all of us. As luck would have it, he and I have both grown up quite a bit from our 20-something selves. Thank God.

I'm not going to be posting much on specifics of him, or our past relationship, to respect his privacy. But, I will be posting some on co-parenting, what it means for our family and how we do it. From the outside, we've been making it look pretty easy (I think). It's not. It's been a lot of really, really hard work, which I'm kind of impressed we both attempted. We attended about 3 months worth of counseling together to get us through the transition. Sometimes it's good to have a third party there to confirm neither of you is crazy (or that one or both of you are!). At least all the cards are out on the table.

We also survived a season of him coaching our daughter's soccer team. He is an extremely talented player and coach, and is amazing with kids. Our daughter, on the other hand, could not wait for the season to be over so she could get on with her life (the love-for-soccer gene was not passed down to her evidently).

In June, we took the kids to Hocking Hills State Park for four days. IT WAS AMAZING. It was also a wake-up call to me (and him I think) that we need to take more vacations and spend as much time outdoors as possible. The kids went ziplining, we went canoeing, hiking, and stayed in a perfect cabin with a hot tub (and two bedrooms). We have vowed to take more adventures like that as a family, since it is nearly impossible to consider either of us taking both kids on trips like that alone.

If you had asked me even a year ago if blogging on co-parenting would ever be something I could add to my repertoire, I would have said you were crazy. But life has a way of smacking us upside the head and surprising us with the totally unexpected.

I'm not really sure what the future holds or if this positive co-parenting moment will last forever. But I do know that I am enjoying it right now. We all are.

Love, k.

The least I can do

I haven't written anything in awhile. I've been busy. And I found my happy place. I feel like no one reads these kind of blogs to see how great someone else's life is going, right? They want to feel like someone is right there with them, in the throws of life, fighting with everything they have. I did that. For a really long time. So trust me, I know the feeling. But I have spent 4 years now writing, reading, doing yoga, finding a good therapist. I have spent 4 years being single and doing nothing but finding myself. I recently started a nonprofit with some friends of mine to serve children with disabilities. It feels right. Everything feels right. I hope you get there soon too, if you're not already. I really do.

I wanted to write this post because I just read an article on inclusion and why it's important for EVERYONE to understand disabilities, not just the children, parents and families that have to live with them. I am so glad that our society is moving in the direction of inclusion. I feel like we are finally starting to get it right. It is no coincidence that the name we came up with for our new nonprofit is Pathway Inclusion Center. It embodies everything I feel is important and everything that needed addressed in our community, and probably in most other communities as well. We wanted to create a place for children with or without disabilities to attend daycare, after-school programs, summer camps, therapy, and play TOGETHER. There is no reason why all of those services cannot be offered under one roof to simplify transportation and save time for parents.

Personally, my children are both doing great and making tremendous gains. Everytime I turn around they are learning something new, their speech is improving, and they are learning how to control their emotions better than ever before. They have learned how to transition from one activity to another and deal with unexpected surprises or changes in routine or schedule. I am so proud of their progress, I really am. But I feel guilty for even ever mentioning it on social media or to friends. Because I know other children on the spectrum that are not progressing as quickly or at all. They may have multiple diagnoses and therefore dealing with something else entirely. But I still find myself wanting to reach out to them and say, it's ok. We're still here for you. I'm still here for you. I am not pouring myself into Pathway Inclusion Center just for the sake of my children. I'm doing it for all the families. I remember vividly the days when my son's speech regressed and I feared he would never speak again. I remember vividly the days when my daughter got upset if I took a different route to school than usual. We had to use a picture schedule every single day to prepare her for things. She rarely connected with other children, other than her brother. I remember all of that and I remember the fear I felt for the unknown. Would they ever graduate high school? Would they ever be in a relationship? Have a family? I was unsure of everything. I am now fairly certain they will go on to do all of those things, if they choose. And that's all any parent really wants. For their child(ren) to be able to choose. Everyone should have that opportunity. But the sad truth is that some will not have a choice. Some parents will have to go on caring for their children long after the age of 18 or 22. I don't know what to say to make that seem less scary. Other than, there are those of us that are here to offer you our help. My home is always open to the families out there that need a day off once in awhile. My children will always be taught to make friends with and show compassion for other children with disabilities. Even if those children cannot talk to them, don't look them in the eye, or play with them.

We still have our struggles, but my kids have adjusted well to many situations I never would have thought possible. People still say to me they don't know how I manage being a single mother, let alone a single mother to two children on the Autism spectrum. For one, I get a LOT of help from my parents. They are rockstars. But what gives me the strength and attitude I have acquired is seeing other families struggle and knowing that could still be me. Sure I have poured myself into my kids the past 3 years and sought out the right books, doctors and therapists, etc. But other families do the same thing, for longer, and don't get the same results. I know that has to be frustrating. You feel powerless when you can't help your children. I have felt that many times before.

I am not a doctor. I can't heal the world. But what I can do is connect parents and families with the resources they need to help their children to the best of their ability. And let them know that they are not alone. That's the least I can do.

13 Things Moms Can Do to Feel More Rockstar-ish

I know so many moms who are going through rough times right now, stressed to the max, feeling overwhelmed, lost, (even some of my married friends). They all know I have been there myself and I will tell you these are some of the things that have gotten me to a better place:

1. Yoga (first thing you do everyday, or most days, in front of a window, I recommend Tone It Up (YouTube).

2. Deep Focus playlist on Spotify (listen to it during yoga, while your working, doing homework, meditating, etc.).

3. Find a job that pays you enough to live the life you want. If the one you have right now doesn't, keep looking. 

4. Buy a house half the price of what you think you can afford.

5. Let someone babysit your kids once every two weeks or so, even if it costs you $20-40.

6. Read something everyday (I alternate between self-help & novels).

7. Find a group of friends (or just one friend) and schedule dinner at least once a month (preferably at a winery!)

8. Find a good therapist. They're worth the money. 

9. Watch tv/Netflix/a movie (not the news!) after you put your kids to bed, even if it's just 30 minutes & even if you're tired.

10. Take your kids on play dates so you and the other mom(s) can see that you're not the only one being driven crazy.

11. Write. Keep a journal or start a blog. It doesn't matter if anyone else reads it. It's for you. If you don't express your feelings in a healthy way, you will keep feeling the way you're feeling.

12. Be selfish sometimes. Even if you feel guilty doing something for yourself, you will be a better mother/wife/person after you take care of yourself! 

13. Keep being a rockstar. Regardless of how you feel sometimes, you ARE rocking it. 🤘🏼

Moms: Go Out and Find Yourself

This one is for the moms...the overworked, underpaid, under-appreciated, overly attentive, guilt-ridden moms. You know who you are. You do everything for everyone and then some. You leave little, if any, time in your day to take care of yourself. And even if you had the extra time, you're so accustomed to doing everything for everyone else that you wouldn't know what to do with the extra time. I cannot count how many mothers I have encountered recently who have told me they are being stretched as far as they can go. They are tired, frustrated, lost, and at their wit's end. They don't feel like they can function one more day at the pace they've been going. I'm here to help with that.

This is not just for autism moms, or working moms, or stay-at-home moms. This is for ALL moms. I've been where you are right now. Not just once, but many times, and for extended periods (2+ years at the very least). I gave birth to my daughter (my oldest) in a room with my mother, grandmother, and two very best friends. It was one of the darkest, yet best, days of my life. I raised my daughter by myself until she was nine months old. Her father and I got back together and a year later, I was pregnant with my son. When I was seven months pregnant, I found myself single yet again. I have raised both of them by myself ever since. Believe me when I tell you, it was not easy. And by not easy, I mean nearly impossible. When I used to think of single moms, I thought "I'm sure that's kinda hard." Wow, did I underestimate just how hard it would be. I had no idea. I was at my lowest point when my son was just under a year old. I was exhausted, sleep-deprived, lonely, depressed, anxious, distraught. You name it, I probably went through it at one point or another. I think I had post-partum depression, but how could I really distinguish that from everything else I was feeling?? It was all a blur. The bad news is that I have very few good memories of the first few years of my children's lives. I was operating in survival mode. My memories are vague. I remember crying a lot; not exactly how I pictured becoming a mother. I won't go into receiving my kids' autism diagnoses when they were two and four years old.  That was an entirely different adjustment.

However, the good news is that all of that is in the past and I have moved on. This year I took it upon myself to get healthy. And not in a physical way (although I recommend that too). I started seeing a therapist. I found a primary care physician for the first time in 5+  years. I started on minimal medication. I started doing yoga and meditating regularly. I started reading self-help books (about things other than being a mom). I started going out with friends occasionally. I bought a guitar. Do I plan on going on tour anytime soon? Of course not, but it's something I've always loved so I am letting myself indulge in seemingly silly things sometimes. I can tell you right now that if I can get myself to a mentally healthy place, you can too. You just have to start setting some time aside for yourself to TAKE CARE OF YOURSELF. Believe me, when you achieve this, you will be able to take much better care of your family. So find a hobby, schedule a night out with your friends once a month, go get a massage or your hair done, get your finances in order, put your kids to bed an hour earlier so you can watch what you want to watch on Netflix, take up that hobby you've always been dying to do (even if you think it will not lead to anything). There are so many ways to take care of yourself and to give yourself that feeling of hope and independence you once had. Just because we become moms does not mean you should lose sight of yourself entirely. Because one day our kids will be grown. And when that day comes, you need to know who you are. So go out and find yourself.

These resources might help you as much as they've helped me:

Headspace app

Pocket Yoga app

Mindsight by Daniel Siegel

OCALICON 2015

Two weeks ago, I attended OCALICON for the second consecutive year. For those of you that don't know, OCALI is the Ohio Center for Autism and Low Incidence and they have an annual conference in Columbus every November. I'm a nerd for research conferences and it was great to attend this year with great friends. Last year I went not knowing a single person, but so much has changed in the past year and I've made so many great friends and professionals in the autism community. There were lots of great presentations to choose from this year, so I packed as much as I could in over the three days.

There were a few reoccurring themes throughout the conference that stuck out to me. Some of the hot topics included: interoception, emotion regulation, UDL, anxiety, and peer-mediated intervention and instruction (PMII). I picked up a couple of great new books: Uniquely Human by Barry Prizant, PhD. and Interoception: The Eighth Sensory System by Kelly Mahler. Another book I'm planning on ordering is Kindergarten and ASD: How to Get the Best Possible Experience for your Child by Margaret Oliver. A few of my favorite presentations included Social Emotional Engagement Within a Universal Design for Learning in the Classroom by Emily Rubin, Uniquely Human by Barry Prizant, Self-Regulation Techniques from the Perspective of a Young Adult by my friend, Chloe Rothschild, Teaching Emotional Regulation: Essential Skills for Students with ASD by Lori Jackson, The Kindergarten Transition: How to Advocate for a Smart Start for the Child with ASD by Margaret Oliver, and Complexities Within Diagnosis and Treatment: Exploring Anxiety and ASD by Szanto, Gonda, Loudon, and Perren.

A few good apps I came across during the conference were KidConnect by The Connections Model, LLC ($11.99). It is designed for students with ASD as well as individuals with other behavior/regulation issues. It helps individuals understand their behavior by pairing the behavior with the underlying cause: their feelings. It is used to prevent kids from having to leave the classroom to work through their behaviors. LOVE this idea. Another great app is MindShift. MindShift (free) allows you to set up a personalized plan to help manage your anxiety and learn coping skills. The third app I learned about at OCALICON this year was the Therapeutic Listening app by Vital Links.

I'm sure I will be posting several more times on specific topics from OCALICON so stay tuned!

My friend, Chloe, and I.

Timocco - Virtual-motion, Therapy Games

I recently attended OCALICON and, while there, I stopped at the Timocco booth. I had heard of Timocco before, but it was great to meet Eran and Jayne and learn more about Timocco. This is a fantastic, interactive product for anyone looking to improve their fine or gross motor skills or just looking to have some fun! My son loves Timocco and it holds his attention while keeping him on his feet. I have attached some videos of him playing Timocco so they would all be in one place. Feel free to ask me any questions about using Timocco or contact the staff at Timocco. They are awesome!

Kai playing Falling Fruit

Kai playing Order Up

Kai playing What's Next?

My Two Superheroes

Back in June, a friend of mine informed me of an awareness walk being held in September at the Toledo Zoo, hosted by NWO Apraxia Support. We had already registered for an awareness walk with another organization for that same day so I did not think we would be able to do both. But the NWO Apraxia Support Family Fun Day & Awareness Walk sounded too good to miss. So I made the decision to change our plans and we registered. Fast forward to this past weekend.

My parents, myself, and my two superheroes attended the NWO Apraxia Support Family Fun Day & Awareness Walk on Saturday and my kids were treated like absolute superheroes. This organization recognized 93 superheroes, which includes children with Childhood Apraxia of Speech (CAS) and other invisible disabilities (Autism Spectrum Disorder, Sensory Processing Disorder, Anxiety, ADHD, etc.). They provided these superheroes with capes, medals, thousands of dollars worth of  donated therapy items, and a visit from the Toledo Police Department SWAT Team (dressed as superheroes). Included in the cost of registration were also t-shirts, lunch, admission to the Toledo Zoo, carousel ride, etc. There was also a live auction, a silent auction, and a DJ.

      

Needless to say, I am now a proud supporter of NWO Apraxia Support, and you should be too. This is one of the few organizations out there that provides practical, tangible, needed support to families. They also have a grant program, which provides families with funds to supplement therapies, treatments, activities or equipment. Most of the items provided for the auctions and to the superheroes were donated by equally awesome organizations. A big shout out to those donors for contributing to the day. To see a list of the sponsors, click here.

Saturday was a day my kids and I will never forget. After everything they've been through, they deserve to be treated like superheroes. Thank you, NWO Apraxia Support, for making that a reality.

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.

The puzzle piece is not just a symbol of the individual with autism

Most people know that the puzzle piece is the global symbol for autism. It represents the complexities and nuances of autism spectrum disorder and the diversity of all the people living with the disorder (http://www.autism-society.org/about-the-autism-society/history/autism-awareness-ribbon/). But, in my opinion, it represents all the long hours parents and caregivers put in day in and day out, trying different therapies and interventions for their child until they find one that works. For me, the puzzle piece has always represented the challenge of finding methods that work best for each of my children. And we get closer everyday to completing our puzzle. That doesn't mean I am trying to "cure" my children or that I expect to someday not have to use the word "autism". It simply means that each day we get closer to finding interventions that allow them to reach their full potential, whatever that may be. That is what will complete their puzzle.

For example, when my son had regressed and lost all of his speech at 18 months, the puzzle was teaching him how to communicate again. The first puzzle piece was using PECS symbols to make requests. The second puzzle piece was learning how to sign (for me and him). The third puzzle piece was his "first" word at 2 years old (even though we'd already been through that at 14 months old). We slowly kept putting puzzle pieces together until now, at 3 1/2 years old, he speaks in full sentences with very little delay, if any. 

Another puzzle for Kai was social skills. I enrolled him in PLAY Project at 2 years old. When he was first evaluated by early intervention, he didn't make eye contact or respond to his name. He rarely played with objects as they were intended (i.e., he would walk around picking toys up and throw them behind his head over and over). Now, a year and a half later, thanks to PLAY Project, he is fully engaged nearly 100% of the time with whomever he is playing. He is the most social child on the playground and will walk up and say hi to every child he meets. His consultant and I, using the PLAY techniques, slowly put the pieces together for Kai and taught him how to play and socialize. Of course, he did all the manual labor. :)

My daughter's puzzles are a little different from her brother's and a lot more complex. Part of the reason is because she is very intelligent, so she thinks she already has it all figured out. At the time of her evaluation at 3 1/2 years old, she exhibited severe echolalia and delayed echolalia. She has overcome the echolalia for the most part (first puzzle piece), but the delayed echolalia and scripting severely interferes with her ability to strengthen her social and social communication skills. We are still working on that second puzzle piece. I began ordering private speech therapy for her this past April, once a week so she wouldn't regress over summer break. It (among other things) is killing me financially, but I knew that she needed that piece of the puzzle. Just in these short three months, she has made so much progress. I may regret spending money on a lot of things in my life, but therapy for my kids will NEVER be one of them. It is priceless.

Karys also receives equine therapy (puzzle piece #3). She doesn't need it for the physical reason that so many do. Instead, we use it to work on her communication and social skills. She identifies better with animals than humans in a lot of ways, so she is more calm and open around animals, which allows her to learn better. For this reason, I also found myself adopting two cats from the Humane Society earlier this year. (For the record, I always swore I would never have cats. This single-handedly proves how far I am willing to go for my children.)

I am in the process of enrolling Karys in PLAY Project, like her brother. I am excited to see the progress she will make. I have a feeling this will be her fourth puzzle piece.

Karys's other puzzle is her emotion regulation. It interferes with a lot of things in her life. I think part of it is triggered by her auditory sensitivity, but I think there are also some underlying anger/mood issues as well, which we will probably not know a lot about for a few more years. 

One of the trickiest parts of autism is all the underlying sensory and emotional issues. Therapy isn't just about teaching them to talk, walk or socialize; it's figuring out the WHY behind those deficits. We are still trying to put that puzzle together for Karys, and maybe always will be. I'm okay with that (as if I have a choice), as long as we are making progress.  We might only find one puzzle piece per year, but eventually, that puzzle will be complete. Even if we never find all the pieces.

What to do when your life becomes small

My life used to be big. I used to travel to places like Brazil, Jamaica, NYC. I moved to the Florida panhandle for a year just because I felt like it. I threw and attended parties. I had significant others. I rarely knew what the next day had in store for me, let alone the next month or year.

Now, everything is so predictable. My job, my breakfast, the charges on my credit card (definitely not small). And very little of it can be compared to my 5-years-ago self. Before you start thinking I am throwing myself a pity party, let me make it clear that I am okay with this (to a certain extent). When I said "my life used to be big", I didn't mean it was anymore "full" than it is now. In fact, it may have been even less full than it is now in some ways.  But it was, without question, bigger.

Most of my days are now spent within a 5-mile radius of my home. A few times a month I venture out 50 miles or so. Rarely further. What reason is there to? I can't afford a vacation, although taking one would probably do wonderful things for my mental health. I am heading to the great plains of Oklahoma next month for my best friends's wedding. Of course, that trip is more about her than me. Yes, my life is small now, and I have chosen to accept that (as if I have a choice). My kids are young (5 & 3). I want them to grow up to have big, adventurous lives someday. But right now, they need their grandma and grandpa, their cousins, their friends, their toys and blankies, their teachers and therapists. They need schedules and consistency and a home. I have provided them all of those things. And we have found a community we love. So we are here to stay for at least another 10-15 years.  

I don't miss my "big" life, although I am glad I had it. I can't say I really missed out on much. I have no resentments toward my current life (although I'm still kinda pissed no one told me how hard this parenting thing was). There is a simplicity that comes with having a small life; something I never had in my 20s. I still find myself creating new ways to complicate things (i.e., going back to school, attempting to date, etc.). Then other days, I wake up at 6 a.m., sit in my sunroom drinking hot tea and appreciate the smallness. My life may be big again someday, but rather than waiting on that to happen, I'm going to appreciate it being small...and full.

It's cuter to be kind

What will happen when my child with special needs isn't seen as cute? <---- I shared this post awhile back when it was first written, but I thought I'd share it again. It's a touchy subject for sure because no one wants to admit to thinking this way, but in all honesty, we do. If we're lucky, we learn to talk ourselves out of those negative thoughts, somewhere between the ages of 20-30 usually. For the saints among us, maybe sooner.

I will be honest here, I think my kids are adorable, both physically and their personalities. And I'm sure they might even grow up to be "cute". (Just for the record: if not, I'm totally okay with that). But what I find myself thinking more and more lately the older my daughter gets is "what if she talks the way she talks when she's 10? 15? 20?" She walks around repeating these cute little random phrases, probably from some tv show or movie and we all laugh and smile because she's 5 and it is cute. But will it be cute when she's 10? 15? 20? Probably not so much. And how will people respond to her if she walks around talking like that? Will they still give her a chance? Maybe so, maybe not. It's a hard thing for a parent to come to terms with. I'm not going to lose any sleep over it for the time being, because the future is so unknown for all of us. And after all, she is only 5. She may grow out of it. If not, I will still love her just as much as I do now. It's the rest of the world I worry about. So please world, be kind...even if you don't think it's "cute".

When you realize all of your family pics are selfies...

I've always loved taking pictures. Mostly pictures of my kids, as anyone that is friends with me on social media can attest. For my daughter's first year of life I probably posted 10 pictures a day of her. Same outfit, same setting, but maybe a slight turn of the head or a new smirk on her face. Now I might post one picture every day or two of my kids. Sometimes more, sometimes less.

I rarely have time to sift through the thousands (yes, thousands) of pictures I've taken of them over the last 3-5 years. But sometimes I take a peek. What I realized today was that the large majority of our family pictures are selfies. Most of the time I captured one or both of my kids from behind the camera. But I decided way early on that I would be damned if I was going to be left out of our memories. So occasionally, I turned the camera (phone) around and snapped a pic of the three of us. Of course it didn't surprise me to come to the realization that most of our family pics were selfies. I was there, I remember each and every one of those special moments my kids and I shared. What did surprise me was the sheer volume of family selfies we've amassed. And also that I'm still doing it. Over 5 years later. I never thought the "family selfie" would stick around that long. I thought maybe someday there would be someone to stand behind the camera besides me for once. Granted, we now live closer to family so we've gotten more non-selfie pics of our family than ever over the past 2 years. But when we're hanging out at home, a selfie or a mom-left-out pic is the only option. And I prefer to not be left out.

This isn't a pity post. I can't even imagine being in a relationship anymore. I'm at peace with that part of my life for now. This post is more about taking a step back and looking at your life and what it's become and how different it is than you ever dreamed. For better or for worse. All of it. Together. One big selfie.

Someday I will wish there were sand in my bed...

Tonight as I climbed into bed, I found myself brushing out the sand from my sheets that my son had carried in on his legs and in his hair the day before. I was kicking myself for not throwing my sheets in the washer earlier today. (At least I got my comforter washed.) Instead of complaining (like I might have another day), I found myself being thankful for that sand in my bed. It meant my son had spent time playing and getting dirty outdoors. It meant he had had fun dumping that sand all over himself and making a great big mess. I thought to myself "be thankful in this moment because there will come a day you won't have sand in your bed anymore. You won't have a sandbox in your backyard, or toys in the sunroom/playroom. Someday, it will just be a sunroom. And you will wish you had sand in your bed."

If you had asked me 18 months ago what I saw for my son's future, I would have said "I have no idea". 18 months ago was when we discovered he had Autism, (although he wasn't officially diagnosed until 8 months later). His speech had regressed from 5-10 words to zero. In those 18 months, he has made more progress than I ever thought possible. His speech took off about 10 months ago and he has not slowed down since. He is now speaking in full sentences and is the most social kid on the playground. I no longer hold the fears I once had about his future. He has proven to me that he is capable of literally anything. I now feel that the sky is the limit for his future and he will be able to do anything he sets his mind to. He has already overcome some of the most difficult obstacles he will ever have to face. I cannot wait to watch him and help him explore this world and discover his passions. I know he will do great things.

But until then, I will keep welcoming the sand in my bed.

It would be easier for us to quit. Here's why we don't...

My daughter has been taking dance lessons since she was 18 months old, with the exception of the year my son was born (that was too much for me to handle by myself). I don't know whether she particularly enjoys it or not, but she tolerates it. She tolerated it more this year than last year, probably because she's been going to the same studio and had the same teachers for 2 years so it is a regular part of her routine now. Last year it was a struggle every week to get her dressed and ready for practice...she resisted. This year, it was much easier to get her ready, but during practice she still seemed aloof and uninterested. She has a teacher at the studio that has been by Karys's side since day one. She  has to give Karys one-on-one attention all throughout practice or she would probably just wander around the room while the other students dance.

The teachers or studio director have never once made us feel unwelcome or like we were a burden for them. I'm sure some days they think about how much easier it would be if Karys were not in dance (as do I and as does Karys I'm sure), but we all keep trudging on because we see how much progress she's made in the last two years. She's not an expert dancer at 5 years old by any means, but the progress she has made can be seen in her increased level of participation and in her social skills. It would be easier for us to quit. I think about that nearly every week, and especially at the end of the year during recital week. I have to use her picture schedule to prepare her for putting her costume on and being on stage for 3 nights in a row. I have to make sure she takes a nap and eats enough beforehand so she doesn't have a meltdown in the dressing room. And there is really no way to prepare her for sitting in the dressing room for 3 hours each night. She just has to tough it out....without mommy.

Two out of the three nights last week she did amazing. But Friday night I thought we were going to have to make a run for it and head out before the finale. She got upset in the dressing room so one of the volunteers was walking around the hallway with her and she happened to see her brother and I (who were taking a break) and after that it was utter meltdown chaos for both of them. They were both wailing uncontrollably in the hallway and Karys kept saying she wanted to go bye-bye. I texted my parents for help ASAP because I knew I needed to separate them so I could settle Karys down. After 15-20 minutes of me trying to talk her into returning to the dressing room, one of the AWESOME moms in the dressing room (that was able to relate to Karys last year as well) calmed Karys down enough to talk her into going back on-stage for the finale at the last minute. Each of the past two years, Karys sits on her special teacher's lap during the finale. This is the only thing that keeps her regulated. But during the finale, her teacher has to stand up and accept an award. Friday night (the night of the meltdown), Karys started wailing on-stage, so her teacher went back to sit with her. Saturday night, instead of crying, Karys took it upon herself to walk up to the front of the stage with her teacher to accept the award. She was smiling and waving at all the moms in the audience that looked like me. She finally found me and the rest of the family in the audience and her smile lit up the auditorium.

I know it is not always easy for the teachers, or me, or for Karys. But there are moments that make it all worth it for me, and hopefully for them and her too. I don't keep Karys in dance because I think she loves it (maybe someday). I keep her in it because I want her to stay involved. I want to give her the opportunity to make friends. I want to give her opportunities to build her social skills, and face her auditory sensitivity. I keep her in dance because being around other kids and having these experiences is how she will learn about the world. In just a few weeks I will be in the wedding of my best friend whom I met through dance when I was three years old. Karys may or may not be blessed with those same friendships, but I am not going to deny her those opportunities. No matter how hard it is some days.

Karys's Picture Schedule

Karys with Miss Sarah

My BFF and I at a dance recital in 1989, age 5