Welcome to PECS (video)

For now, we will show Augustus the picture related to the activity we will be doing to help him learn which pictures are associated with which activity. We will also give him choices at snacktime, with activities, for TV shows, etc., letting him choose between a few pictures in the given category. We also plan to implement “first and then” showing him what we will be doing and what will come after to help him with transitioning from one activity to another. When Augustus gets a little better with his motor skills and gets this whole PECS thing figured out, we hope he will eventually be able to hand us pictures to let us know his wants and needs. Then, for on the go, maybe we will be able to incorporate the use of PECS on an electronic device such as a tablet. He has done pretty well showing me what he wants for a snack when he gets hungry and frustrated and I show him his snack pictures. Hopefully, his frustration in general will decrease overall once he knows he can get what he wants and communicate with us via pictures. It’s all a work in progress.

-AMomsFaithUnbroken

(He also has some pictures in his bedroom that aren’t in the video. We will add more pictures and options as necessary.)

So, I am super excited about this!!

February 2nd, 2019 LifeScape is hosting it’s 25th annual MallWalk at the Empire Mall in Sioux Falls, SD, and I have decided I just have to be there.

Please, donate to our team “Augustus the Great” or donate and join our team if you want to attend the event.

MallWalk 2019 – What is it?

It’s an annual event held by LifeScape to raise funds for the LifeScape foundation.

What is the LifeScape Foundation?

The LifeScape Foundation develops, manages, and distributes resources through donor-centered collaboration to sustain and enhance the lives of children and adults with disabilities and their families who are served by LifeScape.

Their pledge is to always be there. Stating: “Our mission is to provide resources to enhance the lives of children and adults served by LifeScape.”

There are 2500+ individuals served by LifeScape throughout SD and the region!

All about LifeScape

LifeScape has locations in Sioux Falls, SD, Rapid City, SD, and Sioux City, IA.

LifeScape’s mission: “We empower children and adults with disabilities to lead fulfilling lives.”

Their Vision: “All people are valued and respected.”

Their Values: “Integrity, Compassion, Fiscal Respondibility, Collaborative Relationships, Excellence.

LifeScape offers so many services, and as mentioned above, serves 2500+individuals, my son being one of them.

Services offered:

  • Inpatient Rehabilitation and Medically Conlmplex Care (birth – 21)
  • Therapy (all ages)
  • Rehab Physicians (all ages)
  • Special Education School (residential and day students through age 21)
  • Orthotics, Prosthetics, and Mobility Solutions (In partner with Rehabilitation Medical Supply)
  • Pathways to LifeScape Specialty School (training for successful transition to adulthood for students aged 18-21 with moderate to severe disabilities)
  • Residential (children and adults)
  • Conflict-Free Case Management (Amen!)
  • Family Support 360
  • Day Services for Adults
  • Supported Employment
  • Autism Services
  • Camps, Training, and Social Skills Groups
  • Retail Services
  • Center for the Arts
  • Swimming Lessons

What LifeScape Means to My Family

First of all, I am beyond thankful that South Dakota has LifeScape. Many states aren’t as fortunate.

My family’s journey with LifeScape started in the Summer of this year (2018). My husband and I had some concerns about our son, and our son’s primary care physician referred us to LifeScape in Rapid City for an autism screening, which then led to an autism evaluation at the LifeScape in Sioux Falls.

Our relationship with LifeScape continues to this day, and will only become more significant as time goes on. Right now our son, Augustus, receives three separate therapies at the LifeScape in Rapid City on a weekly basis.

Come this summer, when he turns three, we will be looking at some other options for more intensive therapies at LifeScape.

We also want to incorporate the swimming lessons they offer into his therapy, as he has no fear of bodies of water and we want him to be safe.

I had heard of LifeScape before and their outstanding reputation before I even had children of my own. When my son was diagnosed with Nonverbal Autism Spectrum Disorder and Sensory Processing Disorder, I knew that LifeScape was the best thing out there for him. Our family is willing to do whatever it takes to get him the best therapy out there to ensure his future is as bright as it can be.

My husband and I adore all of his therapists and are eternally thankful for his caseworker. The atmosphere at LifeScape (both in Sioux Falls and Rapid City) is one of absolute acceptance, care, and friendship with the utmost professionalism.

Until a disability directly effects your life, it’s difficult to understand what this is all about. What I can tell you is that LifeScape is near and dear to my heart and that if you have anything to give, even just $1, it’s so worth it to know you are helping families like mine and so many beautiful, unique, tough, and unfortunately often misunderstood individuals.

If you are close to a LifeScape, consider volunteering!

Thank you for your support in just reading my blog in itself. Support comes in many ways, not just monetary means.

Peace & Love,

-AMomsFaithUnbroken

Team Augustus The Great

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