Category autism

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

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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

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The Controversial Child Safety Device

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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

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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.

Inchstones

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From the time you give birth until your bundle of joy is a big kid, you hear the term “milestones“, those big leaps our little ones take in learning, coordination, language, physical ability, growth, and cognitive ability. We celebrate them as they occur and sometimes even feel a little sad to see our littles growing up. Doctors ask about milestones at every checkup. Naturally, we usually remember the when the where and the why of these big events in our childrens’ lives. When worried, we are reassured that children often vary in age and the time they will hit each milestone.

As a parent of a child with special needs, these milestones become an obsession as you begin to notice more than one has not been met. Even scarier, when your child begins to regress, and those milestones you celebrated and praised start to disappear.

I learned a new term from a fellow special needs mom, and that term is “inchstones“. Once you learn your child has cognitive and physical disabilities, the way in which accomplishments in growth are made and celebrated changes. While a small milestone so seemingly simple to most may not be a big deal, to some it’s monumental.

I want to share with you an inchstone we celebrated yesterday.

Yesterday, my husband and I worked and our littles went to daycare. My husband picked them up from daycare. When I came home later, I was shocked to see a picture colored for us by our son Augustus. Why was I shocked? He has never colored before. We have tried in the past, but all he was ever interested in was eating the crayons. This was major for us. A major inchstone.

Not only did Augustus color a picture, but he was also able to jump on the trampoline by himself. This is big for us, too, as he has low muscle tone in his lower extremities and struggles with jumping and balance. Another inchstone.

In conclusion, I have to express my gratefulness and acknowledge the absolute blessing that it is to have found a daycare so capable and willing to work with my child with special needs. While maybe most moms would be sad to have missed these inchstones, I absolutely am not. I am in awe of the patience and the ability of my daycare providers to provide the attention and apply the skills needed to work with my child. They are unequivocally a part of our family and a huge part in raising our children. Invaluable.

Thank you all for being here to celebrate the milestones and inchstones we experience as we walk along in this journey we call life.

-AMomsFaithUnbroken

A Day in the Life

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I am not being sarcastic in titling this “A Day in the Life”. This really is THE life. This is the life God knows is perfect for ME. This is MY life. This busy season I am in will not last forever. I sometimes have to remind myself of this…okay, maybe daily, but I really, truly, seriously wouldn’t have my life any other way.

I did have a frustrating and difficult day, and it’s not even over yet. I guess I’m kind of in a venting mood and figure if I blog about it, you get to choose whether you want to read it or not. It’s also a good way for me to look at how I’m managing my time etc. and an opportunity for you to see a little bit of what goes on “behind the scenes”.

8:00 AM – The kids slept in today, but only because bedtime was a bit of a disaster last night. Dad has been sick and was home later than usual this morning. Dad got the kids up and got them breakfast and Gus his allergy medicine. I got to stay in bed a few minutes longer. Hallelujah.

8:20 AM – Ada is at my bedside and wants me out of bed NOW. I try to resist to no avail. Gus wanders in and shuts the window air conditioner off and on a few times. He then gets in my closet and sits down and attempts to pull some clothes down off the hangers. Dad leaves to run some errands.

8:30 AM – I’m dressed and ready for the day. The kids have been up for half an hour now and already have toys spread throughout the living room. That’s the norm around here.

8:30 AM – 9:15 AM – Get some SeneGence (my makeup business) orders ready to mail and deliver. Ada wants to color. Get Ada’s crayons, markers, and coloring books out. She has a constant narrative while she’s coloring and begs me to color with her. I feel bad, but have to get my work done. Gus is trying to take things off of the table and counters no matter how many times I redirect him and tell him not to. He’s running back and forth between Ada’s bedroom and the living room just throwing things around. The norm…

9:15 AM – Dad shows back up with the mail and hands me a big manila envelope from LifeScape in Sioux Falls, SD. I open it up to find lots and lots and lots of paperwork and assessments to fill out. I’m overwhelmed. There is literally a message in this envelope that says “Fill out the forms and assessments enclosed in this packet. We understand completing all of these forms may feel overwhelming. We recommend starting to fill out one assessment/form a day, starting today, and you will be done in less than 1 week.” Did I start today? No. This goes right along with one of my previous blog posts, “Whelmed…A Bit Overly”. The paperwork never ends. NEVER. I also find out in this letter that my son needs another evaluation by a specialist prior to his appointment at LifeScape in Sioux Falls, SD, and that this appointment must take place more than 3 weeks before he is to be seen at LifeScape and if not his appointment at LifeScape will be cancelled and it will be months and months before he will be able to be rescheduled in. Okay…So, I start making some phone calls and leave some messages to try to get this all scheduled and sorted out. Dad leaves for work.

10:00 AM – Time to run errands. I make a list of all of our stops in hopes I won’t forget something. I take my packages to be mailed, my list, and my purse to the car before I even start getting the kids ready.

10:01 – 10:20 AM – Get the kids dressed, hair combed, shoes on, and ready to go. Ada insists on picking a pretty for her hair and has to go through all 50 pieces before deciding on one while I attempt to keep Gus from getting into them. Ada is dressed, her hair is combed, and we put a pretty in her hair. She has a dilemma over which shoes to wear and decides to wear her brother’s sandals. Whatever. As long as she has shoes on. She has about 3 different meltdowns because she wants to put them on herself but they keep falling off. In the meantime, Gus is running wild, literally, screaming and running around the house. That’s kind of his thing. I catch him and get him dressed and his shoes on. Have I mentioned that sometimes dressing him is like wrestling a 30+ pound rolling biting alligator?

10:20 – 10:35 AM – We head to the car. Ada’s shoe (well, Gus’ shoe on Ada’s foot) falls off and we have a meltdown. “Wait for me!” “Me first!” I convince her to calm down and put her shoe back on while I try to help Gus down the stairs. You see, Gus struggles with stairs, and it is something we are working on per his physical therapists’ request. He has a really hard time going down stairs and requires a lot of help. We finally get outside, Gus falls down and on his way up picks up a small rock and puts it in his mouth. Have I mentioned he puts EVERYTHING in his mouth. It’s something we have to be vigilant about constantly. I wrestle him and get the rock out of his mouth. I get him strapped into his car seat. Whew! Now Ada gets in on the other side of the car. I look at Ada and think, “Shoot, we forgot your glasses!” So, I run inside to get her glasses for her. By the time I get back to the car with her glasses, she is in tears and wailing. I ask her what’s wrong and she says she needs “baby”, which is her stuffed animal Goofy that she takes everywhere. I can also smell that Gus needs his diaper changed. I get Gus inside and get his diaper changed and find baby, but I cannot find baby’s blanket that he takes everywhere with him. I think “I hope she doesn’t notice.” Gus and I get back to the car. I buckle him in for the second time. Ada is still in tears and lights up as soon as I hand her baby. I told her baby decided it was too hot for a blanket in the car. She’s okay with that, thankfully. Let’s just hope I can find said blanket for baby before bedtime tonight.

10:35 – 11:00 – First we go through the bank drive-thru. Then we hit the post office. Then I drop something off at work. Then we need to go to the courthouse. There is road construction going on in town, so we finally find a spot right off of a busy street and get out of the car. I unstrap the kids from their car seats, and as I get Gus out he bites me in the hand. Yay! Gus likes to “bolt” as they call it and run off, so someone absolutely has to have his hand at all times or he will literally run and not look back. He still strains and tries to get away, but I keep a tight grip on his hand. Every few steps he decides just to stop and try to sit down. When that doesn’t work, he tries to twist and walk backwards, which makes him lose his balance and stumble. I lift him back up. This happens roughly 5 times just getting to the door of the courthouse from the car. Ada has to be prompted along, as she is interested in the rocks and things painted on the sidewalk and so on. We make it to the courthouse doors and now we’ve got three flights of stairs to go up. Remember what I said about Gus and stairs? Well he’s refusing to even attempt to go up the stairs even while I’m holding his hand, so we give up and I carry him. (Yes, there is an elevator, but it is old and scary and I once saw two of my friends get stuck in it.) Have I mentioned I have terrible back problems? Ada goes up the stairs with constant commentary and narrative being sure to yell loud enough it echoes. We get to the office we need to be in. I was sure to fill out my check before we got there so I wouldn’t have to let go of Gus’ hand to write a check. While waiting for my receipt, Gus is yelling and trying to escape my grip and push buttons on the fax/copy machine. Then he decides to lick the chair in front of the desk we are standing at. Ick! I’m sweating. Now it’s time to head back down the stairs. Ada demands independence and has to crawl down them backwards. I try with Gus for a while, but eventually give up and carry him. Ada has the same yelling and narrative all the way down as she did going up. Okay, Whew! We make it back to the front door of the courthouse. Ada heads out first, and Gus almost gets his hand shut in the door. We play the same try to run away game and sit down several times. Gus manages to wriggle his little hand out of mine and takes a seat in the grass and wants to stay there. I get him back up and on our way. I’m sweating. Ada has to stop and select 6 rocks to take home. I try to talk her out of it. I even try to get stern with her. It’s no good. The rocks come in the car with us. She has so many, that she needs me to hold three of them. She’s getting impatient while I’m trying to get Gus in the car without anyone getting run over.

11:00 – 11:25 AM – I need to put gas in the car. NEED to, as in the low fuel light has been on and it doesn’t even give me a number for miles left on the tank. We get to the gas station, I pump my gas, I go inside to pay. I get back to the car and decide I’ll grab a sandwich from Subway for lunch for myself and find the kids something as well. I go into Subway. By the time I’m back in the car there are tears again from Ada. She is sobbing and yelling. I ask her what’s wrong. “I was trying to hide my rocks and now one is stuck!” The rock is somehow lodged behind Gus’ car seat. She can’t get it out. I can’t get it out. I end up having to unbuckle Gus car seat to get the stupid rock out from behind it. We then head to the other gas station. Ada comes in and we grab some lunch for her and her brother and head to the counter to pay. She chose a Ninja Turtle topped juice for both her and her brother. Hers with a red tie around its eyes and Gus’ with blue. The cashier rings up her juice and hands it back to her. She kisses her juice and says “Oh, thank you. I love it so much!” Okay, that was cute.

11:25 AM – We are home from errands. Nearly an hour to do a few quick tasks, but this is my life and I must now plan accordingly. We get out of the car and all walk inside. I make another trip to the car to grab my purse and our lunch.

11:30 AM – Lunchtime! Mealtimes really, really wear on me. Ada does pretty well, other than that she likes to play with her food at times. Gus on the other hand…It doesn’t matter what he eats or how, I have to sweep and mop when it’s over. He has to be vigorously scrubbed down if not thrown in the tub. This is at every meal, people! No, it’s not his fault at all, but it is trying for me. He has a thing with textures of food and tends to crumble, squish, or tear up anything he eats. He also really likes to throw things on the floor, rub food in his hair, dump his plate on the table and rub his food into the table, and then put his plate on his head. This is every meal, people. EVERY MEAL. Yes, toddlers do this, but he is over 2 and considered a “preschooler” and we aren’t getting anywhere at all with it. Not yet, anyway. Also, when Gus drinks something, when he is done taking a drink, he launches his cup. This includes during mealtimes. So, we are still using sippy cups. We don’t have a choice. He also likes to get a big mouthful of milk, juice, water, whatever, and spit it out down his chest and stomach. Somehow during lunch, Gus gets Ada’s glasses off of her face. Ada gets them back and literally launches them across the table to me and they hit the floor. Thankfully, they didn’t break. After lunch is over, I scrub everyone down and ask them to please go play for a moment while I clean up. Gus gets out of his chair and grabs some food he has thrown on the floor and gets dirty all over again. Ugh…

11:30 AM – 12:00 PM – Lunch cleanup to include the chairs, the table, the floor, etc.

12:00 – 1:30 PM – We play, we run, we make messes, we build, we pretend, we have fun. Messy fun. Fun is almost always messy.

1:00 – 3:00 PM – I request that we have some quiet time. Gus usually takes a nap in the afternoon, but we have pictures today, so no nap. Ada plays a bit, Gus watches some television. Ada climbs all over me in an attempt to stay awake. She hasn’t taken a nap at home in a very long time. We take it easy for a while. During quiet time, I get 3 different phone calls regarding appointments and therapies for Augustus. I spend quite a bit of time on the phone.

3:00 PM – Poor Gus gets upset and cries and cries and cries. I rock him and hold him. This is one of the hard parts of everything. He cannot specifically tell me what’s wrong. I know he’s tired, and that probably has a lot to do with it. Granted, he cannot tell me what’s wrong. It breaks my heart sometimes.

3:30 PM – Grandpa and Grandma show up to help. Grandma gets Ada dressed and does her hair for me. I get Gus dressed. I mentioned before how hard it is to dress this 30+ pound rolling biting alligator. This applies here, too. It was even worse because I had to get socks on him, a button-up dress shirt, and dress shoes. I start the dishwasher as we head out the door.

4:00 PM – Grandpa and Grandma are kind enough to give us all a ride to pictures and also take me somewhere to drop a SeneGence order off. I sit down to fill out the paperwork for pictures while Grandpa tries to keep Gus contained and entertained. Gus wants to tear the building apart. He is trying to crawl under the table and get his hands into and onto anything he can. Grandpa is a trooper and keeps him corralled. Grandma handles Ada. I wish I wasn’t so flustered and sweaty and tired. I wanted to talk to some of the people I saw there getting their pictures taken as well. Sorry, Katie.

4:15 PM – Pictures! Ada does perfect. She sits still. She smiles. She’s good. Augustus is refusing to even sit. He pulls his sisters hair, pulls on her shirt. They eventually have to switch sides because Gus is taller than Ada when they are sitting. Gus is on the table sitting next to his sister and tries to lean forward off of the table. When that doesn’t work, he tries to lean backward. He just refuses to have posture in general for the picture. I’m sure they got something that will be cute, even if my arm is in it. I literally had to hold his full weight up with my forearm to make it appear as if he was sitting for the picture. I’m flustered, but it’s over.

4:15 – 5:00 PM – Grandpa & Grandma graciously take us out to supper. We deal with the drama that is simply walking down the street, the wanting to sit down, bolt, etc. Grandma finally carries Gus. We find a highchair to keep Gus corralled in. Gus falls asleep as soon as the food arrives. We eat and talk and have a good time. Gus gets some zzzz’s.

5:00 PM – Grandpa & Grandma take us home and help everyone into the house. I lay Gus on the couch, but he wakes up crying. I’m not sure why. I attempt to use the restroom in peace. HAHAHA. Ada comes in and takes her hair clip out and says “I don’t want to be pretty anymore!” and throws it on the counter. Then she strips down completely naked and takes off to find a blanket so she can go sit in the living room. Okay…

5:15 PM – I send grandpa and grandma some thank-yous and check in on my sister and niece via text message. I walk into the living room to see Gus has taken a part off of the refrigerator and it is now on the couch. I notice this as he is pulling on the curtains trying to rip them off of the wall. Then he heads to play with the vacuum.

5:45 PM – I decide since the kids are finally seemingly content that I’ll sit down and type up this blog post as a way to just relax and let go. Well…I got it typed, but it took me a long time. Ada was on the potty and had to summon me because Gus was getting into my makeup drawers. Then, Ada needed her butt wiped and Augustus got up onto the table and did something to the computer while I was taking care of said butt wiping. We had a meltdown during butt wiping because she did not want toilet paper, she wanted a wet wipe from Gus’ room. Okay…When I got back to the computer I couldn’t even get it to turn back on for the longest time. Now I have no cursor, and I can’t get it to show back up. Ugh. This was after repeatedly redirecting him from walking up and pushing buttons on the keyboard the entire time. Then Ada decided it was time to color. I took care of that for her. Then Augustus began to cry and whine. Again, he cannot tell me what he wants or needs. Because I know him, it was safe to assume that he was hungry since he fell asleep during our supper outing. This led to Ada deciding she wanted to eat again, too. Then a bit later Augustus decides to chew on some shoes. He is redirected. As I am trying to finish up, he has the piece of the fridge again and is headed to the living room. I head to the living room and he is on the couch jumping up and down and screaming and really enjoying himself. He now has no pants on…He got them off somehow. I see he got a hold of his old Diaper Genie and has thrown that into the hallway. He found a travel pack of baby wipes, too. These are on the entertainment center by the TV.

This may have been the most boring thing in the entire world to read. I understand. If you made it through, awesome! You must really like me.

Please realize none of this is meant to be complaining. It’s just a way of explaining some of the behaviors and things I deal with that are a bit different from you. It’s crazy, it’s wild, but it makes me strong. I have no choice but to be strong. Also, please don’t judge. I don’t need that. Life is hard enough. Also, please don’t judge my use of present and past tense. Yes, this is big. In the past, I would have made sure this post was read and reread and edited and reedited and then edited again. Some things just have to change, as I’m slowly learning. Bear with me all. I need and love you all.

Now, let’s see if I can get this posted without a cursor and Ada attempting to get up on my lap a grip on my forearm yelling my name…

Oh, and there goes the ENTIRE shoe rack to the ground. Loud bang. Shoes everywhere. Guess who? Yep, Augustus. And Ada wants her rain boots on.

Oh, Gus has something in his mouth!!! Ah, it was a cap off of a water bottle.

DVD player is open…he must have been playing with it.

I hope dad makes it home for bedtime. Its not looking promising.

Just a part of a day in the life. 🙂

– AMomsFaitUnbroken

Disclaimer: Times may not be exact – rough estimates. Ha. Also, I’m sure I did not document everything. This is only what my tired mommy brain can come up with as of now.

As I attempt to finish this…Augustus moves a chair at the table and gets onto the table attempting to get Ada’s crayons. He is redirected. He then decides to spin circles and attempt to take the fridge apart again.

Who knows when this will get posted. Haha.

I type over 100 words per minute people. This shouldn’t be taking me this long. Haha. I have to keep my sense of humor!

The diaper is off! Oh no. I get my arm stuck in the Diaper Genie trying to get something out of there that shouldn’t be in there. Owey!

Whelmed…a Bit Overly

amomsfaithunbroken Leave a comment

I knew going in that this was all a process; but not just a process, but a never-ending process. Never-ending…

It all started the day of my son’s 2-Year-Well-Child Exam; questions, lots of questions. Then referrals. Then phone calls. Then more referrals. Then more phone calls. To this day, I am still in this never-ending cycle; but wait, there’s more. The paperwork. I cannot even begin to accurately describe how much paperwork. Paperwork sent to me before his referral appointments. Paperwork filled out at his appointments. Paperwork filled out for LifeScape. Paperwork filled out for the State. Paperwork filled out for the school. Paperwork I have to have others do. Then, scheduling the appointments themselves is a challenge between work, my husband’s work, when I have daycare, when I have someone to watch my other child, having the money to put gas in the car to get to appointments, and so on. So, yes, I’m a bit overwhelmed. I’m assuming I’ll get used to this, and it will become my new normal. I have so many new contacts in my phone…

As I mentioned in my very first blog post, I am what I like to call a “seasonally single parent”. In other words, in the months of March – September my husbands work comes first, no matter what. He does his best to be where he can when he can, but him working is crucial for us to keep things as they are with my getting to stay home 4-5 days a week. Now that we know that my son needs physical, occupational, and speech therapy, it is even more crucial that we keep our schedule this way, just to be able to have one of us available to take him to appointments. It’s hard. My husband is sometimes gone several day sand nights at a time, and almost always gone sunup to well past sundown. I consult with him as often as I can when it comes to making decisions about our children, but often times it leaves a lot of the decision making to me. I’m sure that one day all of his extremely hard work will payoff, and we will be able to live comfortably. We have added expenses now, but we will be able to make do. I’m sure of it. 

The Process

One would think that you see that your child has developmental delays, you then see a doctor, get a diagnosis, set up what needs to be done, and its done, but that is in no way the case with autism. After expressing our concerns, we were then referred to LifeScape in Rapid City, SD, for an autism “screening”. At this autism “screening”, we learned that he had many “markers” for autism and that he would need three separate evaluations for physical, occupational, and speech therapy, and that he would need an autism “screening”. Does this even make sense? All we learned at his screening was what we had already learned at his 2-Year-Well-Child Exam, – that he has developmental delays and likely has autism. They could not tell us if they felt he had autism or if he likely had autism or anything of that sort, just that he needed an autism “screening” because he had so many “markers” aka red flags. I have to admit, immediately after this “screening” I was super confused. What I do know now, is that he is not “officially” diagnosed with autism as of yet even, but he is starting therapy immediately, as he definitely needs help. Like I said, it’s a process, a sometimes frustrating one. They informed us that right now the diagnosis doesn’t really matter, he just needs help. I agree…

We then had 3 separate appointments at LifeScape in Rapid City for his therapy evaluations. There were three of them; physical therapy, occupational therapy, and speech therapy. It was found that he needs to have all 3 therapies on a regular (most likely weekly) basis starting as soon as possible.

Now, the autism “evaluation” is scheduled for mid-November at LifeScape in Sioux Falls, SD. We chose to have him evaluated in Sioux Falls, SD, because the Rapid City LifeScape is scheduled out on autism “evaluations” until 2019 sometime. So, come mid-November, he will be seen at LifeScape in Sioux Falls, SD, where he will play and interact with a therapist, a physical therapist, an occupational therapist, and a speech therapist all at once in a four hour time frame. After this, he will have an “official” diagnosis and we will know where he falls on the spectrum and have a little more information. He is scheduled to start therapy before this evaluation, as mentioned above.

Then South Dakota has what they call the Birth to 3 Program. Your child is evaluated at the local school and you are assigned a caseworker to help advocate for your child and to explain and advise you of the resources out there for families with children with special needs. You also work on your child’s plan for education, which is revised and reworked very often to keep your child on the right path for the way they learn. We start evaluations for this tomorrow, and have all the paperwork done, so far. There are also opportunities for therapists to see your child in your home or at daycare until they turn the age of three.

It seems so backwards. I am meeting at the school regarding education for my second child before my first…

My Army

As overwhelming and confusing as this all is, I am certain we will get a grasp on all of it and it will all become second nature. That being said, there is absolutely no way that things would have worked out the way that they have so far without the help of my family, my daycare providers, and my bosses at work. My parents put in a lot of time and help me out a lot. They are not just “watching the grandkids”. It takes extreme patience and understanding to watch my son. They aren’t just watching him, but learning to work with him. He absolutely cannot be left unsupervised unless he is in a completely “Gus proofed” room, and sometimes even then he can find something unsafe to do or get into. He cannot verbally communicate, so it can be very frustrating to figure out what he wants and needs. He is very curious and has some destructive behaviors. He never stops moving unless he is sleeping. Plus, he has a 3-year-old sibling that needs attention, too, which is so important to provide as well. I can’t just take both of my kids places. My son will “bolt” aka run off without return or any regard for danger etc. Therefore, doing something as simple as getting a haircut or going to the grocery store can really become a chore. My parents and my sister are what make these things possible and keep him safe. For that I am already eternally grateful and know just how lucky and blessed I am. This goes for daycare, too. I know his daycare providers had to have noticed that he had some problems. I let them know what was going on once we knew, and they thanked me for telling them and have been on this journey with us 100%. Seriously, how amazing is that? I know that my son requires more work and attention, and would completely understand if they felt he’d be better off somewhere else, but they have taken this on and are willing to help in any way they can. That’s love. I know that my children’s daycare providers truly love them. That in itself is one of the biggest blessings a parent can find in a world full of so much scary. My boss and coworkers also deserve praise in being so willing to listen to me, work with me, work out a schedule with me, and always make time to talk to and interact with my littles when they are around.

Although this is a never-ending process and a life of constant learning, adjusting, and compromising, I know that I have plenty to be thankful for. Sometimes, it just helps to blow off a little steam.

– AMom’sFaithUnbroken