I figured it was about time I give an update since diagnoses.

We just redid our IFSP (individualized family service plan) with Birth to 3 and changed some of our goals and frequency of therapies.

Gus is seen for OT (occupational therapy) 2x weekly, PT (physical therapy) 1x weekly, and Speech (speech therapy) 3x weekly now. He will also be seen at daycare 1x weekly for a while to see how that’s going, and will be seen at times at home, too. It feels really good to be getting him the help he needs to thrive.

We are traveling to LifeScape in Rapid City, SD, once weekly for 3 of the above mentioned therapy sessions. The others he does at the local school.

This should be our set schedule for a while now, but will all completely change come June when he turns 3 and is done with Birth to 3 Services. We have a plan for that time, but are still working out the details, and have a lot to get figured out before then. All I know is that there will be some very big changes for us for a while starting this summer.

I still spend some time every single day on the phone with the State, doctors, therapists, etc.

Yes, I still have to fill out paperwork all the time.

So, how are things going you ask? Really, pretty well. We are actually seeing some improvement with the therapy he has done so far. He is paying attention for longer periods of time, walking for longer periods of time without “refusing to have posture” (as we call it), and has quit biting mom, dad, auntie, and grandma! Therefore, he has already met one goal on his IFSP – He has quit biting!

We are always constantly working to understand his sensory needs and have purchased a few things for him to use at home, to include a trampoline.

We do our best to apply what we learn in therapy to his everyday life.

Now, onto the PECS thing in this blog’s title. What is PECS? The Picture Exchange Communication System. (Click the highlighted text for more information.) In a nutshell, it is a way for nonverbal people to communicate using pictures. Right now, we are working on showing him that if he points at or gives us a picture of what he wants we can help him get it or get it for him; It being whatever is on the picture. It’s a process that takes a lot of time, but he has shown some progress with it.

We know he knows things, but just struggles to communicate. For instance, he can look at a book of animals with an animal on each page and push the corresponding button with a picture of the animal on it. He has matched things for us before, as well.

He is going to be doing some specialized occupational therapy for eating and feeding at LifeScape. Not just fine motor skills for utensil use, but also finding out what it is about certain things he doesn’t like and why he has certain behaviors when he is eating. Since he has SPD (sensory processing disorder), it could be any combination of things to include textures, temperature, consistency, etc. It would be nice to get some things figured out so I don’t feel like I need a pressure washer to clean up my kitchen after evey meal.

We are also using some sign language as well for words such as “more”, “wait”, “stand”, “swing”, “bath”, “yes”, “no”, “all done”, “milk”, “drink”, “food”, etc. He has never himself signed, but I’m doing my best to always use the signs when communicating with him and practice hand over hand singing with him. I try to get his older sister in on it, too.

He is also saying something like “dooooh” (I perceive this as “no”) and pushing things away that he doesn’t want.

The older he gets, the more frustrated he gets, which is totally understandable. My heart breaks for him that he has to work so hard to do every day things we all take for granted. He will live a life of struggle, but with many accomplishments and things to celebrate, and I’ll be right there with him to struggle with him, help, and celebrate.

We have also found out that Gus’ lazy eye that was turning in pretty significantly has seemingly self-resolved. So, right now, surgical correction is completely off the table. Woo hoo! Also, unlike the rest of his family, his vision is great without any glasses or any kind of correction. I tell you, he dares to be different in every way. Yay, Gus!

I feel like I have finally come to a place of acceptance and am believing more every day that this is all meant to be and that I am exactly where I need to be. Life is feeling less scary, for now, anyway.

Until Next Time,

-AMomsFaithUnbroken

Show Me Your PECS!

I finally started going to church again, and quickly realized how much I had missed it, and how important it was to me, especially in this season of life. I went for several weeks in a row with my daughter, leaving my son with nonverbal ASD (autism spectrum disorder) and SPD (sensory processing disorder) at home with my husband. Why did I leave him at home with his father? I didn’t feel like he was ready, and most of all, I wasn’t ready…

That Moment

I was sitting on the couch at home while my daughter, son, and niece played. My husband was gone for the weekend deer hunting with his brother. I got a text message letting me know that he wouldn’t be home until the following day sometime in the afternoon. That was fine by me. Then, suddenly, the panic hit…“Who’s going to watch Augustus so I can go to church? I really want to go.” Could I convince my sister to watch him? My dad?…I pondered…Then I got to thinking, really thinking,“Why don’t I take Augustus to church with me?” “What are the real reasons?” This led me to Mr. Google. I simply typed “taking autistic 2 year old to church” into the search bar. I read through many articles and blog posts. Many. In the past, I had read many a horror story about families being asked to leave the service because their child was too disruptive or other members of the congregation making negative comments or “suggestions”. I really wasn’t concerned about that. Anyway, back to my Google search: I came across a blog post from another mother of a child with ASD and she said something along the lines of “He deserves to be ministered to just as much as I or anyone else does.” BINGO! That hit home. I was suddenly overwhelmed with emotion and immediately headed outside to call my mom. You see, I usually head to church with my mom, niece, and daughter. The times I felt the need to stay home with Gus if my husband was gone, my mom took my daughter to church with her. Back to the phone call: My mom answered and I instantly told her that I was probably going to cry and I didn’t even really know why, but I wanted to ask her about something. I just started out by telling her I thought Gus should be going to church because everything I learned about God when I was little was from church. And yes, I cried. My mom told me she thought the same and that she had wondered if I’d want to bring him but wanted to wait until I was ready. We talked about everything I was worried about, and I mentioned that I thought that there were probably even some congregation members that didn’t even know I had a second child. The conversation concluded with us deciding that she would come pick me and both kids up for church in the morning and that my sister and her daughter would also attend. I then had feelings of a mixture of excitement, peace in knowing I’d come to a good and right decision, and anxiety. A lot of anxiety.

Of note: I really felt like it was meant to be once I realized that this week’s sermon was to be led by the confirmation students with a pancake feed and fellowship downstairs to follow.

The Worry

As I have mentioned before, I dream about Augustus almost every night. I sometimes have happy dreams of him talking (as I mentioned before he is nonverbal). Other times, I wake up in a sweat and panic after dreaming he bolted away from me and I could not find him. Let me tell you, last night that was not a problem. I couldn’t sleep. I was a ball of emotions. All kinds of emotions. I worry because he has sensory issues and is a sensory seeker. He likes to lean, feel, touch, squeeze, mouth, jump, kick, and just move almost constantly seeking that sensory input. Secondly, he is loud. He does not speak, but he vocalizes, loudly. He stims.

I worry he will pull someone’s hair in the pew ahead of us. I worry he will disrupt the sermon or make it difficult for someone to hear. I worry he will have a meltdown due to sensory issues or frustration. I worry he will escape my hold and run around the church. I worry we will distract others from the sermon and message. I worry…and worry…and worry.

The moment I had the night before led me to realize that none of that really matters. Seriously, I might as well get used to getting stared at or scoffed at anyway as we are out in public and once he starts school. People are cruel, quick to judge, and just don’t understand. Fortunately, I knew deep down in my heart, that I had nothing to worry about at my church. Yes, maybe a curious child will glance at us, but no one is going to be upset by his vocalizing (as long as it’s not excessive) and I will and can always walk him out in the case of a meltdown or sensory issue. 

He Went to Church

By God, my son went to church and was wholly welcomed and accepted, as I knew he would be, and as all should be at church. It’s sad that we do live in a world where it is possible to receive judgement from those at church. It’s a sad reality. Thankfully, here in my small town, this is not an issue. Amen! How did it go you ask? It went as well as I can expect. I fully admit that I was a ball of anxiety the whole time, and I’m sure Augustus could feel that, which doesn’t help. I will get better as time goes on and it becomes more routine for him and myself. Yes, he did vocalize and move around a lot. I decided to let my mom take him up for the Children’s Sermon. He did try to grab the microphone from the speaker and grab her book. He did vocalize. He did wiggle around. But guess what? That’s what he does. He did just fine. I sat there watching, sweating, worrying, praying. He did just fine.

Right before the Children’s Sermon, the congregation was asked to take a moment to greet one another. A kind woman (and neighbor in fact) came to greet us and asked “Amanda, how many children do you have?” I replied “Just these two.” She then asked “How old is he?” I replied “He is two, and Ada is three.” Then she stated “Well I’m glad you’re all here.” I thought this was very kind and also funny because remember what I mentioned before? Telling my mom that I was sure some people didn’t even know I had two kids. Plus,the woman inquiring is a neighbor. I was right.

I held Augustus much of the sermon and put him down on the ground when I could tell he had the need to jump for a minute, which I do not feel was disruptive to anyone. After a while, Grandma held Gus, and it was cute to see that he liked to rest his head against her mouth during hymns. He liked to listen and feel. That goes back to his sensory needs. There was also piano and guitar accompaniment at today’s service. Augustus loved that. He loves music, and especially loves guitars. The sermon today just happened to be about bullying and our branch of churches keeping children safe and making everyone feel welcome. It was meant to be. I have to admit, overwhelmed with emotion during the sermon, I had a few tears. I can’t really even tell you why for sure. I suppose because I was just relating and feeling the sermon. Probably feeling guilty for keeping him from church before. It was overall a good experience and one I am proud to say I made it through. This was all on me, not him. He is who he is. I’m the one that was seeming to have an issue with that. But, that is no more. He’s my Gus. My favorite guy.

The icing on the cake was when I was holding Gus after the service was over and a female member of the congregation walked up and took Gus’ little hand and said “You did so good today!” I said “Yes. Today is the first time he’s been to church since he was in a child carrier.” After that Augustus vocalized and flapped his arms looking at this lady happily, and she said “And we don’t mind that one bit!” (Referring to his vocalizing and stimming.) I have to say, while I was glad to have gone through the whole service unscathed other than by my own emotions and worry, that comment touched my heart. 

I decided not to stay for the pancakes and fellowship downstairs. I was emotionally drained and decided it best to take one thing at a time. Also, Gus has some feeding issues, too. Not that I am embarrassed by them, just that it is a lot of work to feed him and I was drained.

In Conclusion

He was ready to attend church all along. I wasn’t ready for him to. It was a sin to keep him from church, and I have asked for forgiveness, and will be forgiven. I thought I had the best of intentions, but in reality what’s best is him being at church. 

Thank God for helping me realize how important it is for both of my children to attend church services and worship with others and be ministered to. Thank God for my church, my pastor, and the congregation. Thank God for my supportive family and friends. We will see you in church next week!

      – AMomsFaithUnbroken

Take Him to Church

Ghosting – the practice of ending a personal relationship with someone by suddenly and without explanation withdrawing from all communication.

I haven’t written a blog post in almost a month now; not because I don’t have anything to say (type), but because I have so much I want to say (type), and just don’t know where to start.

I want to start by thanking friends, family, acquaintances for reaching out, attempting to keep me involved, the invites, the updates, the small talk.

While I am still present on social media, I have not really been “present”. I’ve been bad about staying in touch. I’ve been bad about responding to text messages, social media messages, etc.

It’s Not You, It’s me

Seriously, it’s me, and I’m sorry. I’m still learning and adjusting. I’m still consumed by all of the phone calls, paperwork, and appointments; a new way of life completely. My mind is always going. I dream almost every single night about Augustus. My thoughts are consumed. Maybe you’ve seen me out. I still end up going out sometimes after the kids are in bed and my husband is home. Sadly, it’s not so much about socializing as it is about forgetting. It’s about having a few drinks and trying to make things numb. It hasn’t gotten out of hand by any means, but it’s still something I’m doing that I know isn’t useful, but it’s what I’m doing. I’m stressed out. I’m overwhelmed. While I often talk (type) about all of the ways I KNOW are right to deal with stress and being overwhelmed; it is much easier said than done. I admit that. This is all new territory for me, and a territory few enter. I feel different. I find it hard to relate to others. I find myself reading blog posts from others in similar situations and crying. I don’t really know what I’m doing other than that I’m doing my best in not knowing what I’m doing. I know I’m being honest and hope that resonates with someone.

The Stings

As time goes on, it’s going to get better, and dare I say some things easier (?). I have a lot of friends and acquaintances with children around the same age as Augustus. I love seeing messages, videos, and posts about them. Even more, I love the rare chance we get to see each other in person, our children in tow. Although, I have to be honest and admit that it often stings. Something as simple as a friend’s little boy waving goodbye stings. Seeing a friend’s son start to say words stings. Some comments and questions sting. I know that no one person I have come across means any harm by anything they say or ask, but sometimes it stings. I have heard more than once now “Is this something he’s going to grow out of or get over?” No. No it’s not. This is permanent. It’s not something he can grow out of. It’s okay to not understand, but it’s not okay to keep asking this same question when I keep giving you the same answer. If I have to accept this, so do you if you are a part of my/Augustus’ life.

DON’T STOP!!!

I do fear posting that last paragraph. I fear because I don’t want you to think that I don’t want you to keep reaching out and sharing your little ones’ milestones and achievements with me. I need them. I need you. I need you to keep me connected; to keep reaching out; to keep inviting me. I need you to help me stay out of Those Dark & Scary Places. Keep asking me questions! The only way to help spread awareness and acceptance is to answer questions. I want to answer anything you want to know about things personally or in general. Ask! Ask away. Nothing is off limits, except not accepting my answer. (Ha, but seriously…)

I share what’s hard in hopes that it will help you to understand why it might take me a few days to respond to that text or why I may choose not to attend an event, why I may seem distant. I’m trying. I really am. Adding to the mental confusion, overwhelm, and sting is the fact that I’m exhausted. I’m kind of just exhausted in every way. Trust me, communication is not the only thing I’m lacking in. I’ve been wearing my husband’s socks for two days because I don’t have any clean socks. I am busy, very busy, but it’s not that I don’t have time to do laundry, it’s just that sometimes I get in the place where all I want to do is relax and try to forget for a while. This would go back to the whole going out thing. Lately, though, I find myself trying to lose myself in a good book. I think that’s okay, although I know I’d be better off getting lost in THE Good Book.

Asking for Help

I know a lot of times people wonder why I don’t ask for help. I’ve mentioned before that I’m a very independent and prideful person. That’s still true, but I very quickly realized with life as it is currently, I have to overcome all that and ask for help, and I do. At the same time, it’s hard to ask for help because I don’t really know what I need help with because I don’t really even know what I’m doing. Does that even make sense? It does to me, but I would totally get it if it didn’t to you. Ha.

Why I Share

I kind of hit on this before, but I want to make it crystal clear that the reason I share is to HELP and to raise AWARENESS and ACCEPTANCE. I am not looking for pity or for you to feel sorry for me. We all live differently and are dealt different hands. The more we can all accept and advocate for one another the happier we will all be. All anyone wants is to be loved and accepted for who they are.

In Conclusion…

I still love you. I still cherish and appreciate our relationship. I need you to keep me present and reach out. That’s how you can help if you’d like to.

xoxo, 

– AMom’sFaithUnbroken

PS There will be a Gus update to come. We are in the middle of a lot of things right now, and redoing our IFSP and starting some new therapy. I’ll share all of the details at a later date once we get it all figured out.

Low-Key Ghosting

I will never forget Monday, October 15th, 2018 – My son’s long awaited Autism Evaluation at a LifeScape center in Sioux Falls, SD. I will never forget because this day made everything “official” and really “real”. I truly didn’t hear much I didn’t already know in my heart, but it’s still different to hear it come out of the mouths of medical professionals highly trained in the field.

THE DIAGNOSIS

  • Nonverbal moderate to severe autism spectrum disorder level 2.
  • Sensory Processing Disorder.

NONVERBAL:

Not involving or using words or speech.

WHAT IS AUTISM ?

Autism is a complex neurobiological disorder that impacts the development of the brain in the areas of social interaction, communications skills, and learning. Autism is a part of a group of disorders known as autism spectrum disorders (ASD).

LEVEL 2:

The DSM-5 notes those with level 2 autism require substantial support. The symptoms associated with this level include a more severe lack of both verbal and nonverbal communication skills. This often makes daily activities difficult.

Common Level 2 Symptoms:

  • difficulty coping with change to routine or surroundings
  • significant lack of verbal and nonverbal communication skills
  • behavior issues severe enough to be obvious to the casual observer
  • unusual or reduced response to social cues, communication, or interactions
  • trouble adapting to change
  • communication using overly simple sentences
  • narrow, specific interests

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SENSORY PROCESSING DISORDER

SPD is a dysfunction in the way the nervous system receives messages from the sensory system, and turns them into motor or behavioral responses. Misinterpretation of everyday sensory information like touch, smell, taste, and movement are indications of sensory processing disorder. Research shows that as many as 1 in 6 children experiences sensory symptoms signification enough to affect aspects of everyday activities such as bathing, dressing, eating, playing, and learning.

sensory-processing-disorder-11-638Signs-of-Sensory-Integration-Disorder-

PLAN

It’s a lot to take in…A LOT. I absolutely adored the team that did the evaluation. The team consisted of a psychologist, a speech/language pathologist, an occupational therapist, a graduate student, and a high school student. They were so knowledgeable and such kind and fun people. After the actual evaluation, we sat at a big table with everyone present and each specialist took the time to explain their findings and their thoughts on diagnosis. My husband and I were allowed to ask anything we wanted.

In addition to the above listed diagnoses, it is also recommended that my husband and I consider a dysphagia evaluation to address some oral issues.

It was recommended that therapies be increased by A LOT. Right now, we are doing joint occupational therapy (OT) and speech therapy sessions for a half hour once weekly. It is recommended that we increase therapy to a minimum of 2x weekly with OT and speech therapies separate. I completely agree with this plan. It is also recommended that we utilize both the South Dakota Birth to 3 Program as well as outpatient therapy at LifeScape in Rapid City, SD. This is what we wanted all along…

MY FIRST LESSON IN ADVOCACY

This is what we wanted all along…I explained to the team in Sioux Falls that when we first started therapy before the official diagnosis, we had informed LifeScape in Rapid City that we wanted to do therapy with them most of all, no matter what, and would even choose their services over Birth to 3 (which is FREE). I played phone tag with LifeScape Rapid City, and I talked to several different individuals. We were told we would be put on the schedule for OT and speech therapy at LifeScape, and even went over what days and times would work best for us and them. I never heard back and never heard back. So, I finally called them. Again, I was kind of given the runaround, but told they would talk to the person in scheduling and get things going. Then, I randomly received a phone call from someone in scheduling. She stated: “It looks like you qualify for Birth to 3 and should be able to receive all of the services you need. Congratulations.” (click…hangs up) I have to admit, at that point I just kind of gave up. I more than got the impression that they preferred we just do Birth to 3. I know there are waiting lists, and I know Birth to 3 is free, BUT I want what I feel is best for MY child. I loved the therapists we saw at LifeScape in Rapid City when my son was seen for his therapy evaluations. The therapists were more than happy that we wanted our son to be seen there. It seemed to be scheduling that thought otherwise. Anyway, I learned my lesson. I have to PUSH and SHOVE and SHOUT and RELENTLESSLY work and NEVER TIRE to make sure my son gets the therapy, care, and support that my husband and I feel he needs and deserves. The therapists at LifeScape in Sioux Falls really helped me to see that. In fact, they said they would call and talk to the head person of LifeScape to make sure that those at the Rapid City branch are made aware of the situation. (All of the LifeScape centers are connected.)

I am actively working on getting us a social worker or some kind of advocate to sit in on meetings and such and to help advocate for Augustus, as well as help us know what’s out there in the way of help and support.

OUTLOOK

With early intervention the outlook always improves. Unfortunately, with autism there really is no outlook per se. A word they actually use with autism (other than spectrum) is fluid.  The autism level is actually fluid. Once my son is ready to start school, he may actually bump up to a level 3 as he is faced with new and difficult tasks, and may really struggle even worse than he does now. It is also possible that he could really grasp things in therapy, and for a while maybe even be at a lower level 2 or even a high 1. There are no answers. There is truly no outlook. I don’t know if I will ever hear my child speak a word, call me mom, tell me he loves me, tell me what he needs. I don’t know if he will ever be able to live on his own, use a toilet, be able to dress himself, have a job, have a family. That’s why I try not to waste my time worrying about the future. I want to enjoy the now and see where things take us. Otherwise, life would be full of worry, fear, and misery.

We will obviously be traveling a lot, and spending a lot of time in therapy. I’m not exactly sure what that means for us. It’s just one of those things we will have to deal with once everything is scheduled. The specialists on the team in Sioux Falls at the evaluation actually said one of their recommendations was for our family to move to Sioux Falls so they could work with my son, as they truly enjoyed him. Don’t think the thought hasn’t crossed my mind. I love where I live, and have never really had much desire to live in a bigger city, especially once starting a family…until now. Granted, that desire is only at about a 1%. You can bet your sweet butt I would do anything to make sure my kids have what’s best for them. That’s why nothing is ever off the table. No, we have no plans of moving right now; none at all. It was brought up, but not seen as being a necessity. Things will be wild and crazy for a while, but then it will become “our normal”. Therapy is always changing and adapting to where the child is at. Therefore, at any time, it could become more or less extensive. We shall see.

It is also highly recommended that we seek out Applied Behavior Analysis (ABA) and/or Early Start Denver Model (ESDM) therapies. These therapies are not offered at the LifeScape center in Rapid City, SD. Therefore, we are going to attempt to find another place to acquire these services in Rapid City, SD.

I’m sure there are plenty of words and things you may have never heard or do not understand throughout this blog. You’re not alone. I’m learning as I go. I have no choice. Never hesitate to ask. If you’re curious about something or don’t understand something, ask. I am all about advocating and educating.

That’s all for now, friends. I could go on forever. I hope you find these posts helpful or at least entertaining in some way.

Peace & Love,
– AMomsFaithUnbroken

DIAGNOSED

The Controversial Child Safety Device

The “anti-lost strap”. The “walking harness”. The “hand belt”. The “wrist harness”. The “child harness”. The “safety harness”. The “backpack leash”. AKA a child leash. They come in many forms, shapes, sizes, and colors. And boy, are they a hot button issue.

In this blog post, I will refer to them as a leash, because plain and simple, that’s what they are.

I remember the first time I saw an adult with a child on a leash. I was in a mall, if my memory serves correctly, The Mall of America even, and I had to have been 4 or 5-years-old. It was an entirely foreign concept to me. I had never seen it before. I remember the adults I was with having some not so kind comments about it, which made sense to me.

I grew up thinking, and continued thinking well into adulthood, that leashing a child was lazy parenting and abusive to children. I kept this position on the topic until the tables turned.

Before I go any further, I want to talk about a story that inspired me to blog about this topic. I considered this topic in the past, but then felt maybe it wasn’t worth the controversy or feels. You see, blogging is a way for me to sit down and think, deal, and feel…feel intensely; really dig deep and share my thoughts and feelings. Sometimes, I struggle to motivate myself to blog because I don’want to deal with the feels, even though I know how good it is for me to just do it.

The Story that Inspired this Blog Post (click this to read)

It was all over the headlines the last week and a half or so. Maybe you saw it. (?) An autistic 6-year-old boy from North Carolina was at a park with his father and his father’s friend when he took off running and his father could not catch up and lost sight of him. They searched for him for days before finding his lifeless body in a marshy area in 2-3 feet of water. When I came upon this story and read it, I literally shed tears and my stomach sunk in a way that is hard to describe.

Autistic individuals have a tendency to bolt. I have mentioned this before in previous blog posts, as my son is a “bolter”. Also, drowning is the leading cause of death in children with autism. They do not fear water and do not understand the consequences of entering the water.

The first time my son bolted on me, he ended up well over 100 yards away from me at a dead run and did not respond at all to his name or anything else for that matter. Thankfully, his dad was able to catch up to him. It was scary and made me realize just how fast it can happen and how fast he can move!

The reason this hit close to home is because, as mentioned, my son bolts and does not fear bodies of water. Also, per his therapists, it is recommended that we use a wrist leash to give him some freedom while outdoors or in situations dangerous for “bolters”. It will give him more freedom and also give caregivers a break from carrying a curious wiggling always moving 35+ pound 2-year-old everywhere to keep him safe.

Yes, leashes have their dangers. A wrist leash can be dangerous in that if the child falls down and the leash is used to help assist standing it can dislocate the child’s shoulder or wrist. But anything can be dangerous. That’s why we have to do our research so we can use devices as they are meant to be used to avoid injury and accidents.

A child leash can be used as a helpful safety device or as a mechanism to show control. Obviously, I just want to be able to enjoy events and outings with my child and keep him safe. It’s not as easy as just keeping my eye on him. It is impossible to keep your eye on any one child all the time. Literally, all the time. My child requires constant overseeing to keep him safe, for now.

I did get a wrist leash for my autistic 2-year-old child. I did this to keep him safe.

I am already well aware of the stares and the looks I will receive because I used to give those looks and stare myself. It is so easy to judge and misunderstand until you come to a place where you find out that putting your child on a leash is literally the best thing for his safety in some situations.

I will do anything for my children. Anything. Even if it means looking like a lazy or domineering parent.

It is impossible to know someone’s situation, and this for me has been the perfect example of why we should not judge.

This isn’t the only situation I’ve come across in that my views have changed significantly. We live. We learn. We evolve.

– AMomsFaithUnbroken

Birth to 3 and our IFSP

IFSP
(Individualized Family Service Plan)

An IFSP is a plan that guides and supports your efforts to boost your child’s development up to age 3. After the age of 3, this turns into an IEP. (More on IEPs later.)

My husband and I met first with our region’s Birth to 3 coordinator. In the very beginning of the meeting, we were to create our “support circle”. This was accomplished by letting our coordinator know who we have that we can talk to or open up to about Augustus. At first, I felt awkward and like our circle would be pretty small; but once we got going, I was able to come up with so many individuals who have helped us in so many ways. I felt so much gratitude after completing that very first task.

We then went over every detail of a day in the life of Augustus to see where and what he would benefit most from occupational and speech therapies. After that, we ranked the things he needs support for most from greatest to least. This list will become the priorities set for his therapies.

Our Birth to 3 coordinator is our advocate and in our corner. We were told we can start or stop anything at any time. We are in control. Our Birth to 3 coordinator will also help us to find other programs and opportunities that may be available to our family and/or Augustus.

We then met with our region’s Birth to 3 program coordinator, a representative for our school district, and the speech therapist that works with our school district. We discussed everything we went over with the coordinator and then the school rep and speech therapist told us their thoughts and we set up a time and place to get therapy started.

For now, we will be traveling to the school for therapy once a week. The speech and occupational therapists will work together for now.

Gus doesn’t have a very long attention span at all, which is something we are working on and have seen improvement in. Therefore, we are meeting just once a week for now and only for half hour periods. He’s a busy dude, a lot goes on in those half hours.

On the IFSP, suggested by the Birth to 3 coordinator, for Dane and I is to have a date night once amonth. We haven’t penciled that in just yet, though.

Good News

As I explained in previous posts, we are waiting to be seen for Augustus’ official autism evaluation. This evaluation gives a clearer picture of where Augustus falls on the ASD (autism spectrum disorder) spectrum. This will help us to see what things may work better for him with regard to communication, learning, etc. This evaluation will also give us an “official diagnosis”, which will help with health insurance and support programs available to us.

These evaluations are four hours long and involve a psychiatrist, a speech therapist, an occupational therapist, and a physical therapist. Therefore, they are extremely hard to get scheduled, and it generally takes months (sometimes even a year or more) to be seen.

This evaluation will take place at LifeScape. There is a LifeScape in Rapid City, SD, and Sioux Falls, SD. The Rapid City campus is much closer to us, but if we were to schedule there, we would have been looking at well into 2019 before we could have the evaluation done. Keep in mind, it was June/July 2018 when we were working on getting on the schedule for this evaluation. Sioux Falls was able to get us in late November 2018, so we decided that was the better choice.

The good news is that I received a phone call and was told as long as I got my paperwork sent in within the next few days that Augustus could be seen in mid-October rather than late November. Needless to say, I got my butt in gear and got that paperwork done and sent! These appointments are rarely cancelled and rarely rescheduled as they are so hard to get in the first place. We are one of the lucky few. Woo-hoo!!

Augustus also had to have an official hearing evaluation three weeks minimum before his autism evaluation so they would have time to receive the results and go over them. They do this just to rule out any hearing problems that could be causing or exacerbating any of Augustus’ issues and problems. Thankfully, his primary care physician is amazing and when I called him to let him know we needed to be referred for one he got it done the very next day and had us scheduled for one in Rapid City within the next couple of weeks.

We got his hearing evaluation done, and his hearing is completely fine. I was almost 100% sure this would be the outcome. Once we received the results, I had mixed emotions. The fact that his hearing is completely normal is a good thing, but it also means that all of his listening issues are cognitive. On the flip side, at least there are no hearing problems to add to the things we are already trying to sort out.

I look forward to and dread his autism evaluation. It will be nice to see where he falls on the spectrum, but it will also show me a little bit into what the future might be like for him, and that scares me. I keep in mind that no matter what we find out, nothing changes. He’s still the same Gus I know and love, and literally nothing, to include any diagnosis, will change that.

-AMomsFaithUnbroken

As you will see, and as I have learned, there are a whole lot of acronyms in the special needs world. I sometimes even quiz Dane on a few here and there, just to make sure we are staying on top of everything we are doing and are able to explain to others.

30 Things I’ve Learned in 30 Years

These are in no particular order or sequence.

1. Take care of your skin.

First of all, wear sunscreen! I learned this the hard way and have plenty of skin discoloration and issues to show for it. Also, it’s never too early for anti-aging products. I only wish I would have cared more about my skin in my teens and 20s. Wash your face!

2. Alcohol has never done me any favors.

This is a quote taken from my dad. I’m not saying I don’t and won’t drink. I’m saying that I am well aware of how stupid it is. I finally seem to be at an age where I know my limits; not to say that I don’t sometimes still exceed them. I’ve had a lot of fun drinking, but no, it has never done me any favors.

3. Share your story, to include the good and the bad.

Now that I’m 30, I’m finally at an age where I know who my real friends are. That being said, I know who i can really open up to. Having those few you can really open up to is priceless. It’s freeing. From a religious standpoint, it’s nice to be able to share the good and the bad and know I’m not being judged and am being prayed for. As you may have noticed, I’m an open book for the most part. I share a lot. Why? Because you just never know who you might be helping by sharing your story.

4. Smoking is bad.

This one seems obvious, because it is! Now that I’m older, though, it’s a whole lot easier to see just how bad it is for a person. When we’re younger old age seems so far away – we don’t worry about it. Now I’m like “Okay, you’re pushing your luck!” Did I want to quit? No. Did I feel I needed to quit? Yes. I’m 72 hours without a cigarette right now. It was time. I’m always going to miss it. My advice is not to start in the first place.

5. Forgive yourself and others.

This is BIG. In my life, I have found it harder to forgive myself than to forgive others. And trust me, I’ve held a few grudges in my day. I now see just how toxic holding on to those negative feelings is. Holding a grudge and negative feelings doesn’t do anyone any good and does nothing but hurt you; eating you up on the inside. True and real forgiveness is hard and something you have to work on, but once you get there, it’s worth it. Forgiving yourself is an even harder feat. I still sometimes struggle with this, as I think everyone will throughout their life. BUT life goes on. There’s no reason to hold onto yesterday when today is lying ahead. I know I’m forgiven, so why not forgive myself!?

6. No one’s house is ever completely clean.

Oh man have I struggled with this one. I like clean. It makes me feel at ease. I’ve had to train myself to accept that there are two kinds of dirty. There is dirty (think cluttered), as in there are things strung out throughout the house and then there is dirty, as in things are grimy, stinky, dusty, rank, dirty-dirty. I have come to accept that messy is okay sometimes. I have to prioritize to keep my sanity.

7. You don’t always have to say what’s on your mind.

Really! It took me years and years and years to comprehend this concept. Honesty is absolutely always the best policy. I actually prefer blunt honesty, but not everyone else feels the same. It’s important to be honest but use some tact in how you portray and share things. I’m not even talking sugarcoating here. I’m just talking saying and sharing advice and things in a tactful un-brash (is that a word?) manner.

8. Ask for help.

Coming from Miss Independent herself…I’ve always taken pride in being extraordinarily independent in life. After graduating high school at the age of 18, I got my own place, car insurance, cell phone, you name it. I didn’t waste any time. I was all about being on my own. Well, on my own, with the exception of my husband (then boyfriend) being by my side.  My husband and I always kept this stance until lately. There were a lot of times in life I (or we) should have just asked for help and saved ourselves a lot of unnecessary grief and trouble. Now that I have young children, one with developmental delays, help is no longer an option, it’s an absolute necessity. Swallow your pride and ask for help when you need it.

9. Be kind to everyone.

This one is so easy. It takes so much time and energy to be negative and unkind. I can’t think of anyone at this point in my life that I wouldn’t be nice or kind to. First of all, everyone deserves kindness. Secondly, I’m just too tired to be anything but kind.

10. Take (calculated) risks.

I will include my husband in this one, as I have spent my whole adult life by his side. We have taken so many risks; so many big, scary, life altering risks. And boy have we crashed and burned a few times. The road-rash and burns heal, and we learn. There is not one risk we have taken that I wouldn’t take again in the same situations. Live a life of “oh wells” rather than a life of “what ifs”. Take chances, make mistakes!

11. Ask/Don’t fear “no”.

This is one I live by. Do you think you deserve a raise? Ask. Does something seem off? Ask about it. Guess what? The worst thing that’s going to happen if you ask is that you’re going to hear “no”. It’s just a word. Learn to be okay with hearing “no”.

12. Don’t be afraid to say “no”.

This relates back to #11. Not only do I not fear asking, I don’t fear saying “no” myself. There came a point in my life where I realized I didn’t have to do things solely to make others happy. In order to live a good life you need to be happy and rarely should someone else’s life come before yours.

13. Rid yourself of toxic people, relationships, and situations.

This relates back to #11 and #12. We all have to do things we don’t like, but if something is truly causing you emotional or mental harm quit doing it! It doesn’t matter if it makes sense to anyone else. You do not need an excuse to do what’s right for you. I learned this throughout my 20’s. There were a few situations in my life that I would literally dread and worry about to the point of them consuming me. Why? I don’t really know. All I know is that said situations were unhealthy for me, and that once I cut them out of my life a huge weight was lifted. Whether it’s a toxic person, a toxic relationship, or a toxic environment…let.it.go.

14. Drink water.

First of all, I feel so much better when I drink the recommended amount of water daily. Yes, it makes me have to make frequent bathroom breaks, but to me that is reassuring. The system is getting flushed out! I also learned long ago that there are so many hidden calories in beverages. I’d so much rather get my calories through food than a drink.

15. Wake up and makeup.

No, I don’t mean literally put makeup on. I mean put whatever amount of effort into your appearance makes you feel good. I was always the type that would roll out of bed ten minutes before I had to be somewhere. I didn’t feel self conscious about my appearance, but I found that I just felt tired and blah throughout the day. Just recently, I have started actually getting ready for my day; washing my face, dressing for the task, possibly putting on some makeup – whether it’s some under eye concealer or the whole shebang. Whatever I feel I need to do that day to feel my best is what I do. It has helped.

16. Invest in a good calendar and/or planner.

Just this year I invested in a Bloom daily planner (check them out). I made this investment even before my son was found to have some developmental delays and all of the phone calls, consults, and doctor visits began. Organization and calm go hand-in-hand.

17. Prioritize relationships. 

Love grows where you water it.

18. Be present.

In today’s world, this is more relevant than ever before. Put down your phone or tablet and close the laptop and live in the moment. This moment you will never get back. This moment you must be present in to remember later. Don’t mask your feelings. Feel all the feels.

19. Have genuine interest in others.

I truly have genuine interest in everyone I meet! I think this sometimes drives my husband crazy because I will talk to anyone and everyone. He seems to think I always single out the…how shall I put this…uh…his words aren’t appropriate…the seemingly lesser accepted people in society (?). That’s the best I can do. If you want to know what he thinks, ask him sometime. Anyway, his views are not mine, and I am interested in everyone’s story. I want to learn from them and they can learn from me. I don’t care who they are.

20. Get the haircut.

Not just the haircut: the piercing, the tattoo, the new hair color. Be bold. If you can’t stop thinking about it, just do it. Life is short and our bodies are temporary.

21. Slow down.

It’s so easy to get caught up in the routine and in the hustle and bustle of life. Slow down and don’t miss out on what’s really important.

22. Happiness comes from within.

Probably the greatest truth I have learned. Someone at work the other day called me “smiley” and said they had never seen me without a smile on my face. Those of you that know me and have known me probably think that sounds insane. I get it. I haven’t always been this way. At this stage in my life, I am happy with me which allows me to be happy and accepting of every other part of my life. Find out what it takes, and get happy and share that happiness. It’s contagious.

23. Focus on Him and study scripture.

I’ve known this my whole life, but have never applied it until recently. This is one thing I do wish I would have implemented a lot earlier in life. I have always been a believer but never put the time and effort into it that it deserves. It is so true that once you place your focus on God and put him first above all and actually study and apply yourself to His Word that everything starts making more sense and falling into place. My priorities have become more obvious. I am happier. I am saved.

24. Write it down.

It is a proven fact that if you write something down you are much more likely to do it. Whether it’s a to-do list or your goals, write it down!

25. Keep a hobby.

No matter how busy and all consuming a family, job, career, life in general gets, it’s so important to keep something just for you. Whether it’s gardening, reading, writing, exercising, hiking, crafts, scrapbooking, cooking, baking, you name it, keep it alive! It will keep you alive.

26. Family really is everything.

Everything I’ve faced in my adult life has brought me back to the simple fact that family really is everything. Family is probably the easiest thing to take for granted. Now I just try to even imagine where I’d be without my family, and I cannot even fathom it.

27. Promote what you love instead of bashing what you hate.

I am big on this! I’m glad you love cheese and sorry you hate eggs, but I’d so much rather hear about why you love and promote and advocate for cheese than all the reasons you hate eggs and why we all should, too. (I know, weird example, but that’s all I could come up with besides political crap.) To me this goes along with not complaining. We all need to vent at times, but just think how irritating it is when you talk to someone and all they do is complain.

28. Find a job you love (eventually).

We can’t graduate high school or college and then jump right into doing exactly what we know we’ve always wanted to do. Most of us don’t even know by that time exactly what it is we want to do. It takes time and patience, but with time and patience, it can and will all fall into place if you work hard for it. My dream was always to be a stay-at-home-mom. My husband made that dream come true, whether it was the best for us financially or not. It was definitely right for us as a family. I got to live my dream. Now I am out in the workforce, but only part-time. I may have went to school and got a degree in Medical Transcription, but I honestly like tending bar more at this point in my life. Life changes and we evolve. Guess what? If the job you find and love isn’t what you went to school for oh freaking well. We change. Life changes. You don’t have to know exactly what you want all the time and exactly what you want will most likely change as you age.

29. Learn from others.

There is nothing more valuable than being able to speak to someone who has been there and done that.

30. Time is the most valuable thing in life.

Time flies. The older we get, the faster it goes. Don’t take even one second for granted.

– AMomsFaithUnbroken