Losing My Religion

Alright so my last post was a pretty long one about the journey we’ve been on with my son and trying to get a diagnosis for him. As of September 14th we have the official diagnosis of ASD (autism spectrum disorder). It’s official he’s autistic and now we have an even longer journey ahead of us to not only get him fully evaluated so that he can be ranked on the spectrum (to determine just how severe his autism is in each area), but to also get him the therapy that he needs that he isn’t already receiving. The therapy that was recommended to us was ABA therapy. This stands for Applied Behavior Analysis and what it boils down to is behavior therapy that is geared towards reducing unwanted behaviors (such as tantrums) and increasing desired behaviors (like eating dinner or heck being potty trained). A lot of the ideas behind this train of therapy stem from classic conditioning and a whole host of other things that gave me flashbacks to my Psych 101 class from college.

So this is great right? We have the diagnosis. We’re even on the waiting list to get the extensive evaluation (it will be a few months though before we get an appointment). AND we’ve sent in the application to the state’s Regional office to enlist their help with getting ABA setup (and paid for). We’re doing all the right things. We’re moving in the right direction at least. We have all of these things to do and read and learn. It’s all great. Except none of this makes days like today any better. Days like today make it hard to see the good. Days like today make it hard to see past this bad spot, to see beyond to what could one day be. Tonight we made spaghetti for dinner. Now most of you will ask: what’s the big deal? Spaghetti is great, it’s an all around favorite and despite the mess is pretty kid friendly. Yes, well not in my household. Tonight we made the spaghetti with panini noodles instead of the typical spaghetti noodles. We did this because they’re so much easier for our daughter (who’s 18 months) to eat. Well Wyatt doesn’t like panini noodles (apparently) and so he refused to even touch his plate let alone try a single bite of his food. He spent the entirety of dinner crying in his chair while the rest of us ate. Afterwards he subsequently went to bed without having eaten anything.

The thing that no one seems to get is that this is an every day thing for us. Every day we struggle to get him to eat breakfast, lunch and dinner. Every day we deal with fits and meltdowns over food that he has even asked for. It is exhausting, it is frustrating and it is heartbreaking.

You might be wondering what this has to do with religion (if not, well you’re going to find out anyways). Over the last two and a half years as we’ve been dealing with everything it has been hard to stay connected to my religion. It’s been hard to make it to church (impossible at times). It’s been a daily struggle to even pray. Reflecting on the last few years I find it rather ironic that early on I had a friend who envied my faith and my resolve to endure to the end. The thing is, it’s not easy. It’s easy to have faith without being tried. It’s easy to have faith when you’re not being tested. It’s easy to have faith when you’re not struggling every single minute of every day just to make it through.

It is not easy to keep faith when you feel beaten down. It is not easy to keep faith when every moment is a struggle. It is not easy to keep faith when you can’t even see that ray of hope, that light at the end of the tunnel. When you go weeks and months and years struggling for something better only to be denied at every turn, to watch time and time again that better thing slip through your grasp it is near impossible to not lose your faith. You start to question what you believe. If my God loves me why does he let me struggle so? If my God loves me then why does he continue to deny me the things that would help me?

It is easy to blame your circumstances on God. It is easy to even convince yourself that there is no God because your circumstances are so bad. The thing that I’ve come to learn though is that this isn’t how God works. He will bless us, he will guide us and he will help us. However for us to get these things from him we must first put forth our own effort. We must first do everything that we should be doing. We need to try every single day to be the best version of ourselves. We need to try every single day to do what we can to be like Christ. We need to be kind and patient and understanding and giving and caring. We need to pray and study the scriptures we need to not only ask for God’s help, but show him that we are doing everything we can in order to help ourselves.

God gave us this life to live, he’s ensured that we have the freewill to make decision for ourselves, to learn and grow and become our own person. It is our actions or lack of actions that bring about our own circumstances not something God has or hasn’t done. We have grown into adults and we are responsible for each and every one of our actions. We are responsible for our circumstances. Even more so we are responsible for how we choose to look at our circumstances. My life is hard, there is true struggle in my life and I can either feel defeated by that or I can look at all that I have in my life that is good. Anyone can focus on the bad things in life, all of the things that make it hard to make it through the day. Not everyone can look at the good things, the small things that add up to so much more than all of the bad.

Through all of this I have learned that I need to keep my focus on the good things, the small blessing that I see in my life each and every day. It doesn’t mean that having faith will be any easier. It doesn’t mean my life will be any less hard. It sure doesn’t mean that Wyatt won’t throw the exact same fit tomorrow at breakfast, lunch, and dinner that he did today. It does mean though that I will cling to my faith, I will continue to strive each and every day to be the best version of myself and do all of the things that I need to do and in that I know that God will continue to watch over me and my family and bless us.

Why can’t you just tell me what’s wrong?

Sorry this is a day late – had a friend get into town yesterday afternoon and was busy visiting with her and wasn’t able to finish this until today.

Alright so this story starts back in September of 2016.

For those who don’t know me well and who don’t know my son Wyatt well we’ve always struggled with keeping him up with his peers and we’ve always struggled with tantrums and behavior issues. Now before you start saying that he’s only 3 (going on 4) and toddlers have tantrums and they all develop at different rates, thank you for this very helpful and meaningful advice. However when your kid will drop to the ground outside or in the store and immediately try to slam his head into the concrete/tiled floor I think it goes beyond the fact that toddlers have tantrums. I’m not even exaggerating these instances, we’ve had on numerous occasions had to snatch Wyatt off the ground before he could bash his head into the hard surface and cause great harm to himself.

Now for those who would suggest that we try the “cry it out” method of parenting: I will tell you that I am a huge supporter of this method. My daughter does on many occasions throughout the week cry it out when she’s gotten overtired and doesn’t actually want to go to sleep. However this approach is useless against Wyatt. We have done what we can to the point of letting him throw his tantrum (head banging and all) in his room and on several occasions he went strong for over four hours and still showed no signs of letting up.

So as we tried to deal with this the best we could – mostly with lots of stress and frustration on everyone’s part – Wyatt had his 3 year well check with his Primary Care Physician. We love his doctor, she is truly awesome, but she is however not an expert in all things. So knowing that there was clearly something going (something more than normal toddler behaviors) she started the process of getting us to a specialist. The first person we were sent to was a Developmental-Behavioral pediatrician that was about 30-45 minutes from us. So really not horribly far to go to get answers. Only problem was that there wasn’t an opening until April. So between the months of September and April we could do nothing except exist as we had for the last few months with no answers and no good way to actually handle Wyatt or is tantrums. We had hope though, we had an appointment and that appointment would give us answers.

When April finally did roll around – at which point Wyatt had improved slightly at least in the realm of banging his head against things – we were more than ready for his appointment. An hour and a half long appointment and dozens of questions and detailing out Wyatt’s life the doctor – the specialist – said rather definitively that Wyatt did not have Autism and that while she couldn’t diagnosis him with ADHD because of his age that he would get that diagnosis in a year or two if his symptoms didn’t regulate per his age. In the meantime it was recommended that we take Wyatt to therapy. This could help in the interim to address his behavior issues.

So we had a direction to go. We had a tentative diagnosis. The problem was that actually getting him in to see a therapist was much easier said than done. Most places had waiting lists that were years out. Something that I found more than frustrating. How can there be such a lack of qualified people to help children who need therapy? Especially in the cases where the situation might be time sensitive? At the time we were under the belief that given time and therapy Wyatt would grow out of his behaviors. If that was truly the case then what was the point of being on a waiting list for a year or more? It was not going to help us in any way because there was a possibility that at the end of the waiting list (when it was finally our turn to get an appointment) his behaviors would be resolved. If they weren’t then we would’ve spent a year in stress and frustration trying our best to manage without any help or direction. I can’t imagine what that would be like. How is it okay to allow this to continue? How is it okay as a society to leave parents and children waiting living a life that isn’t good for any involved? There has got to be a better way to get those who need this type of support the help they need when they actually need it.

Well back to my story. We did manage to get Wyatt into therapy back in June. Any guesses on how this started? You guessed it! With us detailing out Wyatt’s life, with explaining every aspect of his life and our lives together. We had to go over his routine, things he doesn’t like, things he does like, things that trigger his tantrums, things he does, things he doesn’t do, areas in which he is delayed, areas in which he excels. At the end of the first hour long appointment – in which we didn’t even finish all of the intake process – the therapist brought up the possibility that Wyatt might need further testing by Children’s Mercy’s Neuro-Developmental department.

Okay, fine, I called up Children’s and asked about getting an appointment, at which point the person on the phone asked me what for. Apparently him needing tested for neuro-developmental delays is actually too broad a category and they needed a more specific area to test, such as Autism (or more specifically Autism Spectrum Disorder). So I had to call the therapist back to get more clarification on what she actually wanted him tested for. Can I just say how stupid it is that so much responsibility is placed on the parent to get these appointments right? We are responsible to not only fully understand and comprehend what the doctor is telling us (generally in not so simple terms) is wrong with our child and then relay that information accurately and effectively to another person who may or may not have medical knowledge so that they can in turn make a decision that will then impact the future of your child.

Alright, stupidness of appointment scheduling aside we did figure out that, yes, we in fact did want Wyatt tested for Autism Spectrum Disorder. Now to get such an appointment through Children’s requires us to gather and fill out information which we then have to mail back to them so they can evaluate it. Once that is reviewed they will determine if you qualify for an appointment. At this stage they will send you EVEN more paperwork to fill out which has to be finished and sent back in before the child is placed on the waiting list for an appointment. The waiting list itself can take up to several months for the child to reach the top of the list and get an appointment.

Now we made our current therapist aware of this process and the length of time it would take to get in for an appointment so to potentially help offset all of this filling out and waiting around she also recommended us having him evaluated by the psychologist in the office to see if he thought Autism Spectrum Disorder was an appropriate diagnosis. This appointment actually only took a little over a month of waiting. We scheduled it in June and the appointment was at the beginning of August. Once more we were hopeful that we would get answers, that we would be able to get the right help for Wyatt that would help us help him.

Going in we were told that the appointment would take at least an hour and a half. It took almost exactly an hour and a half. Any guesses on what we did for that hour and a half? That’s right! For the third time in almost as many months we detailed out Wyatt’s life. Everything we talked about in the first two sessions with his therapist we talked about again with this new doctor. When there was about half an hour left to this appointment the doctor’s supervisor (probably not the correct term) and was given an overview of what was talked about in the first hour of the appointment. At which point the two doctors stepped out to confer about everything that was discussed and how they wanted to proceed. When they returned we were told that Wyatt has a “Unspecified Neurological Disorder”. What exactly does this mean?

Well it means that after almost a year of waiting and bouncing around different appointments – with more waiting to be done in the next several months or more – they agree that there is something wrong with Wyatt. They can’t say what is wrong with him because even after everything they don’t have enough information to give a definitive diagnosis, but they will continue to see him and gather information in order to be able to make the diagnosis that actually stands between us and getting him the correct therapy. The therapy they think Wyatt could actually benefit from is actually really hard to get the insurance companies to agree with meaning that he will first need to be given a diagnosis with all the correct documentation and data in order for the insurance company to agree to pay for it.

This is another thing that baffles me, diagnosis aside, how can the treatment that is going to help my son be denied because he doesn’t have the right diagnosis? If the doctors all agree that this is what will help him and this is what will get him to the end point where he’ll be able to socialize with others and excel at school then how can it not be approved? How can it not be accepted? How can they tell me that I can’t pursue that course of treatment for my son simply because he doesn’t have a certain diagnosis?

There is something fundamentally broken with our society if this is the common experience parents have to go through in order to find not only the right diagnosis for the child, but also the right treatment. It should not take almost a year to get your child into treatment, the treatment should not be denied simply because the doctors can’t make a definitive diagnosis based on an hour to an hour and a half appointment.

So this post was definitely more on the ranting side of things with a decent amount of complaining, but I did want to share what we’ve been going through in this last year. I wanted to get it all out because it has been one of the most stressful and frustrating experiences I’ve ever had to go through and my sympathies go out to any parents going through the same struggles as me. I feel your pain and all I can say is we’ve got to keep hanging in there. We just have to keep going and doing until we get to the right doctor who is going to make the right diagnosis and get our kids the right treatment. That’s our burdens as parents, to do everything we can to help our children be the best they can be.

Thanks for reading! I hope everyone has a great week!

Don’t lick that!

Okay. Post #3!

This one is going to be about motherhood, while I finish formulating my thoughts on the post I want to write about baptism (so you have that to look forward to in the next week or so! Yay?).

Now I’ve only been a mother for almost 4 years and while it has it’s moments that just melt my heart it is also filled with an infinite number of moments that make me question my sanity and my decision making abilities, because clearly I didn’t learn my lesson from the first one and had to go and have a second one.

What have I learned about being a mother in my whopping 4 years? First and foremost is this: everyone has an opinion. It doesn’t even have to be someone that has kids themselves, they still have an opinion about how you should be raising your kids and how you are quite possibly screwing it up by not doing (or possibly doing) something. In the beginning – I mean like in the very beginning, when I was still pregnant with my son Wyatt – it used to bother me. Now those early months might have had some hormone induced mood swings, but I’ve come to realize something I think is very important. While everyone can have their opinions – and they will, no matter what you choose to do/not do – at the end of the day it’s not up to them. It’s up to you as the parent to make the hard choices; breast fed or bottle fed, cloth diapered or disposables, let them cry it out or pick them up. They can give you their opinion and site all the research in the world, but no one is going to know better than the parent what is best for the kid and honestly so long as the kid isn’t being abused/neglected it’s not really anyone else’s business how you’ve chosen to raise your kid.

Another thing I’ve learned: more with my daughter Kenzie than with Wyatt is that those hormones are out of control. With Kenzie I did try to breast feed. I had lots of opinions about it and I figured I’d give it a go. In the hospital I didn’t have any problems. I nursed and she fed and it was all well and good. When I got home though that first night I was up until 4am trying to get her to go to sleep, but all she wanted to do was nurse. So at 4am I had to wake up my husband so that he could go to the store to buy formula because I was in tears over the entire situation. I was balling like a baby (I know because Kenzie was pretty upset about the not being fed thing since she wasn’t latching correctly no matter what I did) and this was something I hadn’t even really wanted to do – I had agreed because it had mattered to my husband and I agreed to give it a shot for him. Yet there I was crying and completely and totally distraught over something that I hadn’t even been invested in. That however, I have found does end; the hormones even out and life does return to normal at some point: except you have a baby so nothing is ever the same, but hey at least you have control over your emotions!

This leads me into the third thing: it takes a village. Now I thought this was the stupidest saying ever before I had kids. I’ve known plenty of single parents and still do and I honestly don’t know how they do it. I don’t know where we’d be without the great friends we have who are willing to babysit for us, who are willing to lend a helping hand or even simply lend an ear. None of our family lives particularly close so they can’t help as much as they would like to and it makes it hard on everyone. We have been so blessed, so lucky to have the friends that we do. It allows us to be people outside of parents. It allows us to be a husband and a wife without also being a mom and a dad. I feel like this is monumental. For the first several months after we had Wyatt (this was before I had joined the church) it was exhausting. I went to work and then came home and was a mom. While Wyatt was actually a really good baby he still had his moments especially in the beginning where he wasn’t sleeping the greatest and it was hard. I think it was also the rockiest time in the relationship with my husband because we were both tired, we were both stressed and neither one of us was really getting attention from the other because all of our time and energy was going into Wyatt. We had no time to be a couple anymore, we were simply parents and that was it. Once I joined the church and made friends everything changed. Suddenly we could go somewhere and take Wyatt with us, we could have adult interactions with someone else and best of all they offered to watch Wyatt meaning we got to be away from him and be together as a couple. For those who have to do it alone my prayers go out to you and I just have to say you’re amazing because it is hard.

So that all sounds super daunting right? It all sounds hard and not so rewarding, but it is. There are days where I’m so exhausted emotionally and physically from my kids, but then Wyatt will curl up with me in the recliner and fall asleep and it is just the most beautiful and gratifying feeling that it does make it all worth it.

Now to the title of this blog. Below I’ve compiled a list of things that I’ve said as a parent that I never thought I would actually need to say to anyone ever and I’m sure most parents can relate to most if not all of them.

Don’t lick ____ – this is like a motto I swear. Some of the things I’ve had to tell my kids not to lick are: doors, windows, floors, tables, chairs, couch cushions, me, their sibling, some other adult, some other kid, TVs, and possibly a few other things that aren’t coming to mind. This is seriously one of the craziest things ever: whoever thought you’d have to tell anyone not to lick the floor of a store? Not me! I mean what exactly possesses kids to explore the world through taste?

Don’t stick your finger in ____ – again another motto. This one isn’t as used as the first, but it does get said pretty often be it them trying to stick their fingers in outlets, down the drain in the tub, in the top of a soda can, or even in the mouth of their sibling or a dog or cat.

Why are your pants off? – This one is said to my daughter multiple times a day every day. I’m not sure why, but she refuses to actually keep her pants on for longer than five minutes. My son on the other hand hates to be naked and will wrap a blanket around him if we don’t clothe him within minutes of him being undressed.

Why are you playing with ____ – A lot of my world revolves around Don’ts and Whys. This one has a bit of an ick factor though because things that I have to tell my kids to not play with include: their poop (my daughter likes to not only strip, but take her diaper off and play with the contents of it), trash, their food, my food, dirty clothes – mine, theirs, their sibling’s.

So be prepared for a roller coast ride of adventures and emotions! I have never done anything that has ever been more completely and utterly exhausting and yet worth every single second of turmoil.

Stayed tuned for my next post that I’m planning to be about my baptism!