Augustus the Great

was our team name for the LifeScape MallWalk at the Empire Mall in Sioux Falls, SD. Our fundraising goal was $500, and we smashed that goal bringing in a total of $1175! That wouldn’t have been possible without the love and support of our family and friends. We couldn’t have done it without you, and we are so thankful. Considering we were one of the smaller teams signed up, we made a whole lot of money for the LifeScape Foundation. A total of $92,910 dollars was raised for MallWalk25. Very impressive!

I think Ada probably had more fun than Augustus at MallWalk. It is SUPER kid friendly and so, so much fun! There was a DJ and performers and dancing to get everyone pumped up. There were clowns, mascots, superheroes, Disney Princesses, facepainting, balloon animals, a photo booth, team photo areas, and more.

Surprisingly, Ada was all about the superheroes. She spotted Batman from afar, and her goal from then on was to find him, which we did.

Everyone present, staff, superheroes, and guests in general, were so kind.

Then came the actual walk itself. Each team received a sign to hold up displaying their team name and made a big loop around the mall, and the Empire Mall is not small. I don’t even really know how to describe this moment. It was emotional for me. It is one HUGE group of people, all with an understanding of disabilities or having disabilities themselves all together for one cause in one building with one goal. It’s big and caused big feelings. Like I said, I just cannot accurately describe it in words. There were so many people there. For the walk, it is one giant snake of people, no gaps, around the entire mall. Unbelievable.

A couple of my husband’s cousins and children came to MallWalk to get in on the fun and walk with us. We had a blast!

Family Time

The MallWalk was a great reason to get out of town and spend some time together as a family. Like I said, it is a very kid friendly and family oriented event. We arrived the day before the walk to preregister and have some family time. We went to a Build-A-Bear Workshop for the first time, and Ada had a perfect experience there.

The kids had a lot of fun playing on the rides at the mall, too.

This is not to say things went off without a hitch…

We stayed in a hotel Friday and Saturday night. We do have family in the Sioux Falls area, but Augustus has issues with new environments and sleeping, and a hotel is our best bet, as he can have complete darkness and has stayed in hotels before so somewhat knows the routine.

We always bring a pack-n-play for Gus to sleep in. He is far too wild to calm down and relax and go to sleep on a bed, and his pack-n-play is familiar to him. I have no idea what will happen once he outgrows his crib and pack-n-play.

We were on the second floor of a 3 story hotel so there were people above and below us. Gus never just falls asleep. Even at home, he is often awake for hours in his crib. Dane, Ada, and I have grown accustomed to sleeping through his jumping, squealing, laughing, and noises he makes. Granted, at home he is in his own room with the door closed, which muffles some of it.

The hotel was a different story. He stayed up until 1:30 AM jumping, squealing, screeching, flopping, giggling, and just being plain noisy. We were quite concerned we were going to get kicked out of the hotel. Dane and I tried everything we could think of to try to calm him to no avail. This kept Ada awake, too.

Therefore, after MallWalk, which was in the morning, and lots of hard playing with cousins, Ada definitely had quite the attitude, as she was just plain wore out. The next night did go quite a bit better.

Thankfully, the children generally travel pretty well.

All in all it was a great time for a great cause.

I’ve been keeping a sleep journal for Augustus so we can discuss his sleep with his doctor and maybe find a better way for all of us to get better sleep!

Thanks for reading and thank you for your support!

– AMomsFaithUnbroken

LifeScape MallWalk25

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 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