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Tuesday, June 28, 2016

Dear Sir

I think I may have had one of those out of body experiences today. Something happened and it was like I could see myself still sitting there but in my head I was screaming "Is this really happening?" Here's how it went down: A few months ago a dear family friend approached me and Brad with an idea that really resonated with us. She has a heart for people with special needs and a lot of talent to offer. She had a plan for how we could merge our collective talents and do something pretty cool. No more details on that right now; I'll just say that it was an idea that was big and good. So big and good in fact, that we felt we needed to get some outside expertise on it. So we set up a meeting and went to seek advice from a professional. My friend even took a vacation day and drove several hours to meet me for this--that's how much she believes in what we want to do. We talked excitedly on the way to the meeting and we were so pumped up. 

We sat down and made our introductions. We laid out our backgrounds, our credentials, and our passion. And then we waited for words of wisdom. What happened, well it was the opposite of wisdom. 

Almost as if he were telling us a great confidence, our "professional" told us that we might want to target those in poverty stricken areas, since that's where autism usually arises. We were taken aback, as this is a completely erroneous idea. Autism occurs in all countries, states, races, and it most certainly knows no socioeconomic boundaries. I tried to explain this and was told that these things happen in poverty stricken areas because of inbreeding. INBREEDING!!! Y'all, I can't even. I've heard some pretty whack causes of autism but that takes the cake. Needless to say, my friend and I were shocked. We tried to educate, we really did. I'm not sure any of it got through, but we both tried. We were gracious, because we are gracious people. And also because Brad had the kids and we didn't want to have to call him for bail money. 

You know how sometimes someone just says something so completely out of left field that you aren't even sure how to respond and later you think of all the things you wish you had said but didn't? That's kind of what happened to us. So just to get this off my chest, here it goes:

Dear Sir,

We came to you with a great idea and a whole lot of passion. You didn't provide much of the help we were seeking, but you certainly reminded us that we are passionate for a reason. We were just talking on the way to your office that we (perhaps naively) believed the word is pretty well out about autism awareness. You proved that there are still people around us that are so very unaware, whether we realized it or not. You reminded us that a person can be very well educated yet still remain ignorant. Autism is a complex neurological disorder that may be poorly understood, but I feel confident in saying the medical community at least agrees that it isn't caused by being poor or inbreeding. There is strong evidence of a genetic cause for many cases of autism; however you would do well to learn that a genetic basis does not equal parents who are related to each other. I wish you could meet the geneticist who works with my family. He's a true example of a professional; brilliant AND compassionate. 

Autism is characterized by a lack of social skills. But Sir, after you informed us that back when you were in school people referred to people with autism as "idiots" and made your whole spiel about the poverty and inbreeding AFTER I had told you that I was the proud mother of a son with autism illustrates the fact that they are not the only ones with a lack of social skills. You may have meant to make me feel stupid, but you didn't. I'm in charge of how I feel, and you don't have my permission to make me feel stupid. 

I do feel sad to know that people like you still exist. People that don't see my son as an amazing individual. People that are part of the problems in the world and not part of the solutions. I told you today that until it happens to you, most people don't care about it. That's a sad statement, but I've found it to be true. All your money, your degrees, and the letters after your name won't protect you from having a grandchild with autism. However, I really hope that doesn't happen to you. Not because I would feel sorry for you having to deal with that, but because I would feel sorry for the kid having to deal with YOU. 

Regards, 
Melissa Essary

P.S.

My family and I went on to have a great evening. Here I am enjoying a night out with my awesome son with autism, his precious service dog, my lovely daughter, and my husband, who is not a blood relative. 

Friday, June 24, 2016

True Stories From the Back of the Struggle Bus

I haven't written in a long time because honestly things have been quite hard and when I need to write the most I want to do it the least, even though I always feel better afterwards. It's a hard balance for me because I truly think that we help each other by being authentic and just keeping it real, but I fear coming across as negative and I don't want that. With that being said, here it goes. 

A couple of months ago we noticed some alarming changes with Korban. There was an increase in his already plenty high anxiety, which always seems to result in an increase in aggression. His skin-picking, which had been eradicated well over a year ago, suddenly returned with a vengeance. He also started pulling his hair and biting himself again. 



That's what his skin looks like after picking. It's awful. We've tried all sorts of sensory toys, redirection, rewards and medication to get him to stop and this go around, nothing has worked. 

There was also a regression with schoolwork as he pretty much couldn't focus at all. He stated having meltdowns and screaming fits with no warning that we could see. Usually we at least realize when something triggers him, and even if we couldn't head it off completely we could brace ourselves a little.  Now they seem to come out of nowhere, both at home and in public. This has really put a damper on being able to get out and do things as a family. Everyone who knows us knows how important that is to us, and it really hurt to have all of that suddenly snatched away. 

Of course, we started scrambling to his doctors and therapists, trying to find an answer and get some relief for him. His neurologist tried adjusting his meds. We take that slowly and carefully and are just now finally starting to see some positive results but only by a slim margin. He already has a pretty intense therapy regiment, and the therapist his neurologist recommended that he see  we've already been seeing for years and love. 

We talked to his neurologist about some physical changes we had noticed and she told us that he is starting puberty and that's likely to blame for his personality changes. She said there wasn't much we could do about that besides ride it out. I gotta tell you, I was in no way prepared for that. He's 10, and mentally seems much younger. I think of him as still my baby and figured we at least had a few more years before we had to worry about any of that. She said it wasn't abnormally early and that it takes several years to get through. 

Me when getting Korban's autism diagnosis: "Well, at least we know what's going on. How do we help him?" 
Me when getting his primary immune deficiency diagnosis: "Oh there's a treatment for that? Thank God! How soon can we start?"
Me being told he has started puberty: "We will all surely die." 

Seriously though. I've kept a pretty even keel through all the other stuff, but the one thing that happens to everybody I think is going to kill us all. In all fairness, puberty is hard no matter who you are. But puberty and autism sure don't mix. If there's any positive to be found, at least if he started earlier maybe we can be done earlier, before he gets much stronger and bigger??? 

The hardest part has been the sudden and intense aggression, which has mostly been directed towards me. I'm very thankful it has not been directed towards Selah but sad that she has witnessed a lot of his aggression towards me. And I really don't enjoy being a punching bag. I've been hit so much here lately I get nervous when people walk up behind me and start trying to turn and move away from them. It's so odd to me that my brain has responded like that. I had pretty much zero experience with anything like that before Korban. He's the only person that has ever hit me but it's thrown me into some kind of survival mode and I find myself flinching away even when there is no danger present. I guess my mind is making up for all the times when I haven't seen it coming. 

Example: Last month Brad and I made plans to meet a friend for dinner in Corinth. We arranged for my mom to keep Selah and Brad's parents to keep Korban. He is only rarely aggressive with anyone besides me, but we split them up just in case and because he does so much better with one on one attention. We were gone for a short amount of time, and then I went to pick Korban up. They bragged on how good he had been. No behaviors while I was gone. He seemed fine, we said our goodbyes and went to load up in the van. I will say at this point that Jet had started acting odd right after I got there. He started whining and pacing. He got up beside me on the couch and pressed against me. He does that sometimes when it's about to storm, and I even went outside to check for rain but it was perfectly clear. I thought it was odd, but loaded him in the van and then turned to buckle Korban in. When I leaned over him he kicked me in the stomach and then punched me right in the face. It happened in a split second and I had no idea that the "storm" Jet was trying to warn me about was not outside, but inside. 


And that's what I looked like the next day. Lovely shiner! So yeah, I'm a bit jumpy. 


We've worked really hard on making Korban's room sensory friendly so that he would have a safe place to decompress. The large blue thing is a crash pad and it's awesome. He can jump and flop on it. He likes to lay on it and have Jet lay with him when he's stressed. The green thing with rollers is called a steamroller. He climbs through the two sets of rollers and it applies deep pressure to his whole body. It's modeled after Temple Grandin's "squeeze machine."  The red punching bag is a recent addition. Found it for $18 at Goodwill. What a find it was! If we are lucky enough to tell when Korban's getting angry or upset, we can get him to his room and let him put on his boxing gloves and punch the mess out of that thing. Better it than me! He understands that it's ok to hit the punching bag but NOT people. He's just sometimes so impulsive that he can't stop himself in time. He feels badly about it afterwards. We are hoping these changes to his environment will help him remember to use his coping skills and calm down with appropriate methods. 

I could say lots more, but this post is plenty long so I'm just gonna to wrap it up with some FAQ: 

Q: Does Jet help? 
A: Absolutely. He keeps Korban from bolting when we are out places, he applies deep pressure to Korban to help calm him, he enables him to sleep in his own bed in his own room. All those things are huge. As I mentioned in the story I told earlier, he clearly feels when Korban is getting upset. Is he able to prevent that? No, not always. But I've been Korban's mom for 10 years now and I sure can't do it all the time so of course I don't expect a service dog we've had for 6 months to be able to do what his parents can't. 

Q: Have you tried...
A: Essentials oils? Yes. They smell good. Doesn't change his behavior but at least be smells good while he acts bad. 

Biomedical treatment? Yes, for years. Limited results. Still working at it--have an order of probiotics and high dose vitamins headed to my house right now as a matter of fact. 

Pharmaceuticals? Yep. Don't have a thing against prescription meds and I've mentioned many times that we use them. Do I worry about side effects? Of course. I worry about everything! That's why we stay on the lowest dose possible and keep regular appointments with his doctors. But his anxiety is fierce, and in my mind it would be cruel to not try whatever methods were available to help him with that. Meds don't bother me and I don't feel guilty about giving them. It's sometimes hard to find what works, but when we do come across something that helps him feel better it's worth it. 

Therapy? Yes. He currently gets AutPlay (autism specific play therapy), ABA (applied behavioral analysis) speech therapy, occupational therapy, and physical therapy on a weekly basis. 

Cannabis oil? No, but only because it isn't legal in Mississippi. If it were and we had a dr to prescribe and monitor, I'd sure give it a go. 

Special diets? Yes. Helps his stomach issues but not behavior so much. 


Here he is eating raw veggies dipped in Wholly Guacamole. Took us a lot of years to get to this point with his eating and I'm
super thankful. 

Q: Are all people with autism aggressive?
A: Of course not. I just happen to have one that reacts aggressively when he is anxious or upset, and since that's what I know that's what I talk about. However, I do know many other people with autism (both children and adults) and the vast majority that I've met are quite meek and gentle. 

Q: Don't you just wish he was "cured?" 
A: Actually, no. That's not my ultimate goal with all of his therapies, medication, etc. I want him healthy and happy, we much as possible anyways. Autism is a part of who he is. He's funny and cute and quirky and I would never seek to take those things away from him 
I just want him to learn coping skills so that when he gets overwhelmed he can ask for help or self soothe rather than tearing his own skin off or attacking me. 

Q: What about Selah? 
A: Obviously she's aware of all that is going on. She loves her brother so much and hates it when he struggles. Brad and I have always tried to be open and honest with her and explain things in way that she understands without it being too much for her. We've made a big effort to do things one on one with her here lately, since Korban hasn't felt up to getting out much. At home we have activities they can enjoy together, like playing outside, which they both love. 



We are fortunate to have grandparents close by that are glad to have Selah over for a little break when things are rough at home. Also, we have her in play therapy so that she can work through her anxieties and so that we can make sure we aren't missing anything that's going on with her. 

Q: What's your biggest fear?
A: That all this stuff won't be enough to help my kids. 

I'll just leave this here...




Wednesday, March 23, 2016

Kicking Off Autism Awareness

Last year I wrote a blog about attending the Light It Up Blue pep rally at Hernando High School and their Bolt for Blue 5k. The students and staff at Hernando High are an amazing group of people and we really enjoyed that time. They helped us raise the money to get our sweet Jet and it really touched us in a way that's hard to describe.

To read the blog post about last year's Bolt For Blue click here

We took a lot away from that event, and Brad's brain went into overdrive which is always interesting. Ha! He's a planner and a doer, and he appreciated what they did so much he wanted to be able to bring something similar to our community. He put his head together with some coworkers that have kiddos on the autism spectrum as well, and Reconnect 4 Autism was born. We kicked off autism awareness month with Bolt for Blue and closed it out with the Reconnect 4 Autism color run. April 2015 was a very big month for us! 

The funds raised from the color run were used to start sensory friendly family outings in our community.  This is the only fundraiser done by the group.  We've done monthly sensory movies (lights up, sound down, kids free to move about, etc), had a cookout, a pool party, playtime on jumpers, family get-togethers, costume party, and had a blast doing it all. It's been great being with people that understand where we are coming from and I love seeing families get to come and participate in events that they might not normally be able to do. Planning for the second annual color run is in full swing, and we are all looking forward to a year of more sensory friendly family activities. Please plan to join us if you can! 

What the people in Hernando did for our family meant a lot to us and will be with us forever.  They played a big role in Korban getting his service dog, Jet. This was our way of paying it forward the best way we could. I think of it like the ripple effect; like when you toss a stone out into water and see how far the ripples radiate out from it. So let's cast those stones in a good way and see what we can do to bring some positivity to our world!  Autism awareness turning into acceptance from one side of Mississippi to the other and forever connected.


For more information about Bolt for Blue, or to register for the run go here:
Light it up Blue Hernando Facebook Group
Bolt for Blue 5K Registration

Check out Reconnect 4 Autism here and sign up for the second annual color run here:
Reconnect4Autism Facebook Page
Reconnect4Autism Website
Reconnect4Autism Color Run Registration

 

Thursday, March 17, 2016

Changes Ahead!

We have been doing Korban's IViG infusions in Birmingham for 4+ years now. He was diagnosed with a primary immune deficiency when he was 4 and started the infusions when he was 5 after prophylactic antibiotics and other treatment measures didn't help. 

Driving to Birmingham every four weeks to hold him down for an IV hasn't been easy but it's kept him so much healthier than before, so it's definitely been worth it. We've made the best of it and have been so thankful that treatment is available and that we were able to get it. 

We've been worried about him for a little while because he tires out so easily and we can see the infusion "wearing off" at the end of the month. He gets really pronounced dark circles under his eyes and doesn't want to do much at all. Our family, his teacher, and all his therapists can tell when it's time for his infusion.

 We had a checkup with his immunologist a couple of months ago, and we told her what had been going on. We asked if his dose needed to be increased. He has grown an awful lot! (Nearly as tall as me and weighs 94 lbs. Whoa!) She explained to us that a clinical study was becoming available and thought it might be a good fit for Korban. Rather than getting his infusion once a month he would get a weekly treatment. Instead of having to get an IV, he would get a subcutaneous infusion. That means they would numb his skin with EMLA cream and he would have several small butterfly needles inserted under his skin on his belly and the medicine would go in that way. The weekly treatments will keep his levels higher and we shouldn't see such a slump at the end of the month. Also, Brad and I can get trained on this and start doing it AT HOME!  So we met with the nurse heading up the trial and did a bunch of bloodwork and tests on Korban and a lot of paperwork these past 2 months.  Thankfully Korban was accepted for the clinical trial!!! 

His first subcutaneous treatment will be  Friday. We go once a week for a month, which will be hard, but after that we should be able to start doing them at home and we will only have to check in at UAB every few months. We have worked closely with the nurse that is over this clinical trial for the past couple of months and are excited to get going. 

We've talked to Korban about it and he seems to understand and be okay with the change. He's pretty excited about the "butterfly needles" as opposed to an IV. Although I have to say, he's done better with his IV the past few months than he's ever done! 

We think Jet has had a lot to do with that! He's a big comfort to Korban. (And also a good foot prop! Lol) 

So a couple of concerns/prayer requests:
1) Like I said, Korban seems to be ready for this and we've done our best to prepare him, but despite our best efforts we never know what his reaction to a certain situation will be until we are actually in it. The goal is for this to be LESS stressful for him, so please pray for a smooth transition. 

2) If you had asked me 10 years ago if I thought I would ever be able to put a needle in somebody and give them any kind of medical treatment, my answer would've been a resounding "NO!" I mean, I am the one who fainted straight into the floor at my OB's office over a simple blood draw when I was pregnant with Korban. So very embarrassing! I haven't done very well with blood and related things in the past, but that was me before. I also didn't do well with frogs and lizards and such as that, but I sure have come a long way. I feel good about this, and I want to be able to help Korban       We never know what we are strong enough to do until we actually need to do it, so I've learned not to say "I could never..." That being said, I am a bit nervous so please pray for calmness and steadiness for me and Brad both. He's typically very steadfast in such matters and I'm so grateful for that character trait in him! But he won't always be there when Korban needs it done so I need to be proficient in it. Please pray for steady nerves, steady hands, and NO FAINTING! I'm pretty sure I'm past that. I'm glad spring is coming though. I may need to go out and catch some frogs and lizards just to remind myself what a tough mama I've become. ;) 



Thursday, February 18, 2016

10 Signs You're A Service Dog Mama

1) Your daughter gets upset because you have dog treats in your purse but no actual human snacks. 

2) "OOH LOOK A DOGGY!" is your cue to keep your eyes focused straight ahead and walk faster. 
3) You find yourself giving your kids one word commands such as "Here," and "Sit!"


4) After doing #3, you always ponder the fact that your dog listens better than your kids and are just grateful that someone minds. 

5) You are continually perplexed at the number of people that think this does not apply to them: 

6) But you are extremely grateful for people that understand this and have good service dog etiquette. 


7) Can answer questions about why we have a service dog, what he does, how we got him, and the Americans With Disabilities Act while grocery shopping, sitting in waiting rooms, trying to use a public restroom, etc. Depending on the day, sometimes the answers are more coherent than others! 


8) Chose your parking spots based on the nearest available bush or patch of grass. 

9) Think to yourself if you had known your child would actually sleep in his own bed once he got his dog, you might've actually stolen one several years back. (Not really, but oh my word. I kiss Jet goodnight and pray for him just like I do Korban when I put them to bed every night.) 


10) You had no idea you could love a dog so much. I just thought I liked animals before. Jet is family. 💙




Monday, November 23, 2015

Two Kinds of People

 Last week I got a pretty clear glimpse of the "two kinds of people," and I thought it was worth blogging about. These two incidents happened a day apart and the two different perspectives were...interesting. 

First of all, let me say that this is very much a "keeping it real" kind of post and it might be a little different from my usual tone. I try to post a lot of positive things on here and on social media as well. I like to talk about things we've done as a family, things that have worked for us, and finding the good in tough situations. I also really like to post pictures of our kids and dog because I happen to think the three of them are pretty stinkin' adorable. 

But I've read several different posts here lately about sharing only your "highlight reel." Meaning you post only really spectacular stuff on Facebook so that the world will think you have it all together and that every single detail of your life is uber fabulous. Now it's kinda hard for me to keep a straight face as I type this, but if any of you read my stuff here or on Facebook or wherever and mistook me for someone who has her crap together, then I am truly sorry for that. I'm someone who bumbles and stumbles and makes a lot of mistakes but I do try really really hard. 

For me it's a fine line between wanting to focus on the positive and also wanting people to know what our life is like dealing with autism and immune deficiency. On the one hand, we have a good marriage, two precious kids, a service dog, a host of family and friends that love us, a home and many other blessings. Korban can talk, tell us he loves us, and give hugs and kisses. 

We like to be out and about so our kids can experience things. We believe hands-on is the best way to learn. We've been to parks, parties, movies, restaurants, children's museums, science museums, plays, aquariums, zoos, even Sea World and Disney World, water parks, Churches, conferences, concerts, as well as just about any sort of sporting event we can get too. Due to Korban's autism sensory issues, we've had to work very hard for these things but it's been so worth it. I can look back and say there was honestly much more good than bad.  Most of the time there is usually some bad with all good.  There are moments to overcome.  I'm not always the best at pushing on--I'd rather give in and give up most times, but not Brad.  This is why Korban can go to ball games.  He doesn't just go but actually soaks it all up to talk about for weeks.  I could do a post just on Korban's sporting experiences.  There has to be a time of overcoming the bad such as anxiety and overstimulation.  It's a revolving door that has to be dealt with before enjoying the good.  

But speaking of the bad...we've also had no time for each other or even ourselves, little sleep, black eyes, busted noses, scars from being clawed until blood ran down our arms, bite marks, bruises from being hit that hard. Korban has told me that he wants a different mother and wants me to die. We've fought to protect our daughter from a brother who can't control his behavior sometimes. We've fought to protect him from HIMSELF. 

Korban has autism, severe anxiety, obsessions, compulsions, severe sensory issues and an immune system that doesn't work as it should. He cries, screams, and has meltdowns in which he sometimes hurts himself or lashes out at whoever else is around.  He throws and breaks things, some of them that he cares very much for, then is upset over why it happened and when he can get the next one. Basically there is very little impulse control.  Over the years, he has picked his own skin off when nervous, pulled his hair out until he had bald spots, bit himself, banged his head, and has even tried to poke his own eyes out on several occasions. If that wasn't enough, every four weeks we go to a children's hospital three hours away to hold him down while he screams and begs us to stop just to get him hooked up to an IV that will infuse him with a blood product full of immunoglobulins that will compensate for what his body is not able to produce. 

Was that hard to read?  Are you glad I just stick to the happy stuff mostly?  This is our life, ALL the parts of it.  So I'm saying it now to let everyone know the good, the bad, and the ugly. Things aren't always rainbows and butterflies. We've had a lot of hard times, but we choose joy. I've said it before, I'll say it again: hard does not have to mean bad. I've had a lot of down times and been consumed by worry and fear but I know I can't stay there. My family needs me to be more than a bitter, angry shell of myself.  

We do see lots of doctors. Korban takes medication. We use nutritional supplements. He does intensive therapy three days a week. We recently got a service dog for him. Things have been looking up and we are SO thankful. The aggression and self-injury, which had always been the hardest thing for me too deal with, is better than it's ever been. We've worked so hard and it's finally starting to seem like we might be getting somewhere instead of spinning our wheels. 

So that's why I was kind of blindsided when I heard this week that there are people who are concerned we are doing too much for our kids. I believe the statement was "too many children's museums and pizza places and does Korban actually need all those doctor's appointments anyway?" (News flash: he does. I mean, we don't HAVE to do so much therapy but given all the issues I mentioned a couple paragraphs ago, I really don't feel like sitting on my hands and just hoping it all goes away. As for the IViG, I'm pretty sure that if you don't follow the doctors plan of care for immune deficiency they call that medical neglect.) 

Needless to say, when I heard this I was upset to say the least. And I explained and justified myself. The point by the person was, we shouldn't be spending our money to do those sorts of things. I mean, for crying out loud, I don't even have a job!  I spend my days running back and forth to therapy and eating pizza after playing at the children's museum you know. ;)

I told Brad awhile back that he couldn't afford me. He laughed because he knows it's true. What I was saying is, we literally could not afford to pay for somebody to take care of our kids every day and do what I do.

Anyhow...we aren't rich by any stretch of the imagination. I'm paying student loans on a degree I'm not using. But I'm so glad I get to be home with my kids. I really wanted to be able to stay home with them and I'm incredibly thankful it worked out so I could.  Brad does have a good job and he works very hard to take care of us. 

We are on the road a lot, due to all the aforementioned appointments. So we've always tried to do at least one fun thing while we are out in hopes that our kids will remember that instead of just an endless parade of doctor's offices, IV sticks, etc. We're already there, so why not make the best of it? And we KNOW we aren't rich. We've gotten very good at planning outings, purchasing year long passes while they are on sale, scouring Groupon and Living Social for deals, saving money by packing our own food, etc. I need to do a separate blog post on how to do family outings on a tight budget because we've gotten it down to a science over the years. And we've done it because it's important to us. 

Why is it important to us? Because, unlike the person making the comments about us, I don't think that just because we have a child with disabilities we need to hide out at home and feel sorry for ourselves all the time. How is Korban going to learn how to navigate the world if we don't take him out and show him?  I'm glad we started young and I feel like our little "field trips" are just as important as any therapy he's done. 

Also, it builds family unity. When Selah first started play therapy back when things we so rough with Korban she basically told the therapist that she'd like for him to just move to his own house and she could go see him every now and then. :(  It went from that to seeing our family as a team. She later told her therapist that she helps to take care of Korban, he plays with her, and Mommy and Daddy take the family places so we do fun things. Much happier scenario in my mind. 

Moving along to the second incident I mentioned; the second kind of person. Friday afternoon the kids and I were walking Jet on the trail behind our houses it had been a long, tiring week and I was glad it was the weekend. While we were walking, my cell phone rang. I answered it and was surprised to hear the voice of an old friend of mine, someone I had not gotten to talk to in quite a while. She told me that she had just had me and Brad on her mind and that she was thinking of us and our kids. She said she knew we had been through a lot with Korban and that we do a lot and some days we get up and think "why am I even doing this?" (It's true. Some days I just want to climb under a rock.). But she went on to say that she thought we were doing a great job and that our hard work was paying off because Korban is doing so well. Y'all, it blessed me so much. I can't even explain it!  Not only did it bring joy to my heart, it made me realize how much I want to be that type of encourager to others. 

I've now realized that I got way too upset about the negative encounter. Honestly, It's pretty cool that someone thinks we are doing too much for our kids as opposed to not enough. Although I'm sure there are those out there that feel that way too. You can't please everybody and unless you are living in their situation you really don't know. I'm one of those who just wants everybody to be happy with me, but the older I get the more ridiculous I realize that is. All that being said, there really are two kinds of people in the world: Those who build others up and those who tear them down. Which are you going to be? 



Sunday, September 20, 2015

A Boy And His Dog

I wanted to give everyone a little update about how our first week with Jet has gone. First of all, it has flown by and it's been really awesome. The first night we had Jet, he slept in his crate. We wanted to try letting him sleep with Korban but also wanted to let him settle in a little too. Let me explain that Korban has always had trouble sleeping and has NEVER slept in his own bed. We do use melatonin and that helps a great deal but still, me or Brad always have to lay down with Korban and help him fall asleep. He has trouble settling himself down to fall asleep so we would do something to help him unwind, like snuggle him tightly or rub/scratch his back. Once he falls asleep, he awakens very easily. So if we try to get up it usually wakes him up and we have to start the whole process again. 

So the second night we talked to Korban and told him Jet wanted to sleep with him. He seemed impressed by this and wanted to try it. He went and got in his car bed and Jet hopped right up there with him. I sat beside them on the crash pad until they fell asleep. I got up to slip out and Korban stayed asleep but Jet woke up and followed me to the door. I didn't really know what to do, but I happened to think and pointed at Korban's bed and said "Kennel!" That's the command we give him to get him to go in his crate or get in our vehicle. Turns out it works on car beds too!  Jet hopped right back in bed like "Cool, I get to stay here?  I didn't know. Thanks, Mom!"  Korban came and got in bed with us at about 4:00 that morning but that was a long stretch of sleep in autism land. 

The next night was even better. Since the previous night had gone so well I wanted to see how it would go if I just tucked them in and let Korban try to fall asleep in his own. Like I said, he's 9 and that's never happened. I told them goodnight and that I would be close by if he needed me. Korban said "I'm scared!"  I told him that there was nothing to worry about, that Jet was there with him, mommy and daddy were in the next room, and that God is always watching over us. And then I started to walk out. Korban called out "Close the door," and I pulled it part of the way closed. He said "ALL THE WAY, MAMA!" I couldn't believe my ears but I shut the door. I guess he really wanted to make sure Jet didn't jump ship. Ha!  But here's the amazing part--we didn't hear a peep out of them until the next morning!!!  It was really funny because I had just had this discussion with Brad about how I didn't want to heap a bunch of unrealistic expectations on Jet right off the bat.  We knew he was going to be a huge asset to our family but I didn't want everyone to be expecting miracles everywhere we went. But seriously, after our kid went to sleep on his own and slept through the night I was like "SWEET JESUS, THERE HAS BEEN A MIRACLE IN THIS HOUSE!" Never underestimate the power of a good nights sleep!  It just meant so much to us that Korban felt that comfortable and safe with Jet. That's a big breaththrough with Korban's anxiety; his separation anxiety in particular. 

Be still my heart...

Korban hasn't slept through the night every single night, but he has slept much better. If he gets up, Jet gets up with him. For example, one night Korban had a nosebleed. He gets them frequently. So he came to tell us and Jet came with him. Korban wasn't upset or anything, which was good. He hates nosebleeds and crying just makes them worse. We got his nose to stop bleeding and he headed back to his room. I offered to let him sleep in our bed the rest of the night and he refused. He said "No, I sleep in here with Jet." Impressive! 

Several people have asked me how Jet reacts when Korban has a meltdown. My answer is I don't know yet because amazingly enough, Korban hasn't had a major meltdown in the week Jet has been with us. I'm sure the opportunity for Jet to help deal with a meltdown will come soon, but Korban seems calmer and happier with Jet around and it's been a really good week. 

Korban did have to go to timeout yesterday for throwing his plate in the kitchen after he finished his lunch. He was mad because he had eaten enough and I told him no more food right then. And it was buffalo chicken, one of his favorite things, so hearing no was hard and he acted out impulsively. He had to sit in his room for five minutes. Jet went to timeout with him. I was listening outside the door and after a few minutes I heard Korban talking to Jet. It was so funny and cute. He said "I threw my plate. *deep sigh* It was a bad choice." Apparently Jet is a good listener because when the timer went off Korban came out of his room and apologized to me. Pretty cool!  

Please continue to keep us in your prayers. It is a big adjustment for all of us, Jet included. Poor Selah is a little jealous, and we've been dealing with some behavior from her due to that--namely being whiny and kind of clingy, which she usually isn't. She adores Jet, I think it's just a little hard for her because in her eyes it seems like Korban had this really cool thing happen to him and she's feeling a little shortchanged.  She is happy for Korban though and she's honestly a big help. One morning I found her with a washcloth gently cleaning Jet's paws after his walk. I would've never thought to ask her to do that, she just took it upon herself to pitch in when she saw his paws were wet from the grass.  I'm very thankful for how well things are going. We all love Jet, and he seems quite happy with us too. :)

He has to go back to his trainer this Tuesday for a vet apt to get his teeth cleaned. Gotta keep him healthy! And Charles will do some "fine-tuning" with Jet's training. All of this was planned and is normal.  It doesn't mean anything is wrong, so if you see us out without Jet don't worry. He will be coming back soon to stay permanently. That being said, I miss that sweet dog already and am a little worried how Korban will react, especially at bedtime. But this is all part of the process and it will be good. Just keep the prayers coming and please know we appreciate everyone's support and encouragement more than I can say!