I’m gonna give it to you straight: I’m f#@*ing tired. I am tired in ways I don’t even know how to describe. Everything is a fight, and right now I’m struggling with the fight to get professionals to understand.

I am physically exhausted. Let me start what I’m about to explain with a couple of quotes:

“I have worked with well over one hundred kids on the spectrum, and I have never met a child as ‘active’ as Gus.” – Board Certified Behavior Analyst

“I have been doing this for over 7 years, and like I said, I have never seen a child as active as he is.” – Board Certified Behavior Analyst

Ladies and gentlemen, I am not exaggerating when I tell you that my son is moving from “son up to son down”. The only time he is still is when he is asleep, and he has a lot of trouble doing that. I thought I had seen some “hyperactive” kids, but every one I have ever met has NOTHING on Augustus.

Let me paint a picture for you: I have just one lamp in my entire house because he has broken all of them. He has tore down curtains and the attached rods and their hardware on several occasions, and I finally gave up and tacked blankets up. I once had an acquaintance ask me “How are the curtain climbers?” in reference to my children. That would have been funny if it weren’t true. I have holes and bite marks in the curtains that remain. I have gone through countless “new to me” rummage sale recliners he has jumped on and body slammed and broken. The couch is stained and in shambles because he has jumped on and crashed onto it so often. I think even grandpa & grandma had a chair fall victim. I have holes in my walls from furniture being tipped over and crashed into the wall and from being jumped on and slid into the wall. My baseboard heaters are commonly disassembled. I cannot leave anything on my table or counters unless pushed all the way back to where little hands cannot reach, and he keeps getting taller. A coffee cup is broken in this house at least monthly. I cannot have food or drink in the living room or utilize the coffee table. The TV had to be mounted on the wall where it could not be reached. The refrigerator and pantry have to have locks, not because he would eat everything, but because he would dump everything out and tear everything up. The bathroom door has to be locked from the outside. Every exit to the outside has to be locked from the inside. My bedroom is locked from the outside. If not, he takes all the clothes out of the drawers and off the hangers. When I say locked, I mean rigged so Gus cannot open, which sometimes means Ada cannot open, which means more work for me. These precautions are for his safety. He seems to have no impulse control. He unravels toilet paper. When he is allowed access to the bathroom, he will put everything he can find in the toilet and bathtub, and then turn the bathtub on full blast. He throws things off of bookshelves just for fun. He tears things open and apart. He takes things out of drawers and cupboards and runs throughout the house with them. He enjoys watching TV or his tablet, but he cannot sit still while doing that either. He has to be running, jumping, and crashing or spinning, twirling, and flapping. He hates having the lights on in the house, and turns them off every opportunity he can get. It’s an endless battle to have the lights on at night to get things done. He likes to hear the noise of things hitting the ground. He likes to watch things hit the ground. Even in his car seat, he squeals, squirms, and kicks the chair in front of him. I am telling you, he absolutely cannot sit still. CANNOT. This all started when he was very young, and the only change is that he is heavier and taller now, therefore, more destructive.

He is nonverbal, but he is NOT quiet. He makes all kinds of squeals, sounds, noises, and babbles. He loves noise. It is comforting to him to make noise.

He struggles to wind down and shut his body and mind off. He will not sleep without a dose of melatonin, and wakes up every single morning between 2 and 4 AM squealing, screaming, jumping, and crashing. We have modified things so he is safe in his room and not wandering about the house at these times, but it’s still not quiet. If we are lucky, he falls asleep again after an hour or two.

I’m used to this. I’m exhausted, but in a permanent state of exhaustion. I’m used to it. What is concerning is that this “extreme activeness” is inhibiting his ability to learn. He has to get up after just a few minutes of sitting and just jump in place. He has to take breaks to crash into beanbags. Even when he is trying to focus and sit still he still has to move; kicks his feet, shakes his head, etc. He tries so hard, but he absolutely CANNOT keep still. It’s not his fault.

We give him plenty of opportunity to get his energy out in appropriate ways. We have a trampoline in the living room, a swing in his room, and various other things to try to help him feel calm. We have tried so many different sensory diets and tools I couldn’t even count them.

He requires constant supervision for his safety. I can try to lay on the couch or in my room or anywhere, but I have to make sure he is within at least hearing distance. If he has access to me when I am laying down or trying to rest, he climbs on me, jumps on me, pushes against me seeking pressure. Therefore, until he falls asleep or he is in someone else’s care, I do not “rest”.

Anytime we are out of the house, he has to be holding someone’s hand or he will bolt away. He has no danger awareness, stranger danger, or impulse control. He communicates primarily physically right now, and will walk up to anyone and grab their hand if he wants to go somewhere or have access to something. He has zero concept of personal space. If he sees something he wants, he takes it, whether it be food on someone’s plate or someone’s personal valuables.

I guess that sums up the physical tired and a bit of the mental, too. I have to always be on my toes anticipating what he might get into, onto, etc. You could not imagine the effort it takes to even just attempt to keep the house in some order.

Then there’s the fight and the emotional exhaustion. The fight to get people to understand. The fight to make sure he is given the same rights as others. The fight for services and HELP.

Gus’ therapists and my husband and I decided that the hyperactivity was something that needed to be addressed since it was really negatively effecting GUS’ life. Covid-19 made getting an appointment with a clinical psychologist a chore in itself. I won’t go into the boring details, but it took appointments, several phone calls, and a whole lot of waiting just to be seen. THEN I filled out lots and lots of information for the psychologist and talked to him/her on the phone a couple of times for extended periods of time. The day of the appointment comes and the psychologist decides we would be fine meeting via Zoom (video conferencing). I was fine with that if that was what they felt was best. They said they were happy to be a part of Gus’ care team and follow-up with him throughout life. At the same time, said psychologist told us he/she was unsure of what he/she could do for us. They had letters from Gus’ primary care physician, had talked to Gus’ BCBA on the phone, and talked to me on the phone TWICE. We were very specific in letting them know that we wanted to address his hyperactivity, sleep problems, and bouts of sadness and crying. The meeting ended with “Well, I didn’t see him, so I can’t diagnose him with anything, but I think you could try…” There was more to it, but not worth explaining. It was just stupid. I’m not really sure why we jumped through all of the hoops if this is how things were going to go down. Needless to say, we have all decided a second opinion is needed. All parties involved kind of got the vibe that said psychologist was not interested in working this case. I wish he/she would have just said so. What a huge waste of time.

That’s the emotional and mental toll, besides the day-to-day frustration and heartbreak (on Gus and my part) of watching and seeing him cry and not being able to understand or help.

I am constantly rearranging our schedule, filling out paperwork, talking on the phone, e-mailing, arranging, explaining, persisting, and fighting. A constant balancing act.

We are lucky in that we have a few therapists who now somewhat understand Gus. I type “somewhat understand” because none of us fully understand. Everyone is different. Everyone on the autism spectrum is different. We all need to take the time to at least try to understand, or at least understand that everyone is different and accept that.

I always try to share the good, but sometimes I think it’s good to share the  hard, too.

It’s not that nothing has gotten “better”. He has improved in SO many ways, as I often share. It’s his hyperactivity that has not changed and is inhibiting more and further progress.

Needless to say, we are seeking a second opinion. AKA here we go again. I have to call the insurance provider tomorrow and two different professionals to try to get this ball rolling all over again.

I have no idea what the answers are or what needs to happen.

As I mentioned, I am f#@*ing exhausted, but I will never stop fighting.

The Fight

Summer is here. We’ve already used almost an entire bottle of sunscreen. We all have tan lines. That’s how it should be.

I am happy to say that our local swimming pool is OPEN, with precautions in place. I know just how lucky we are. Most public pools throughout the country are closed down amid the Covid-19 panicdemic. Going to the pool with my two children has and always will be an adventure. I have to admit, until this year, we had only been to the local pool MAYBE twice and my oldest is five-years-old. This was only partly due to our busy schedule. The other part was ME. Having two small children close in age made going to the pool terrifying. The fact that one has zero danger awareness and the other is quite cautious and that neither of them can swim makes for a wild time. Now that they are older and I found them floaties they can wear, life at the pool has gotten much easier. I have succumbed to the fact that I will most likely never be the mom that gets to sit on the side of the pool reading a book and soaking up the sun. I will always be the mom in the pool. I’m okay with that. Fortunately, both kids love the water. As I stated, Gus is fearless! He will float/swim himself anywhere and has zero fear. Ada is very cautious, doesn’t like to get her face wet (especially not the eyes), and usually has a tight grip on me or someone else. What is a sensory seeking little boy’s favorite part of the pool?: The jets where the water comes out on the side of the pool. He will find one of those and hang out there as long as he can, placing his hand(s) in front of it. Ada took swimming lessons this year and has gained a lot of confidence. I really want Gus to learn to swim, but will have to maybe wait until he is a little older and find somewhere that specializes in teaching those on the spectrum. The hardest part of going to the pool with the kids, at least when I am alone, is leaving. I have to get the kids and myself dried off, gather all of our things, and get everyone’s shoes on all while holding Gus’s hand. If I don’t, he will take off and jump right back into the pool.

I also set up an inflatable pool in our yard. Both of the kids enjoyed that. What did a sensory seeking little boy enjoy most?: Leaning onto/out of the pool so the water would cascade out to make mud. He also enjoyed getting in and out and bolting at a dead run. A good workout for me.

Speaking of bolting, we are doing our best to try to have a privacy fence installed around the perimeter of our yard. It would be such a relief to be able to be outside and play with BOTH kids not have to worry about Gus running out into the street or getting into any other forms of danger. He could then RUN without having to have his little hand in mine and burn off that excessive energy he carries around with him at all times.

While we are on the topic of excessive energy…I always talk about Gus’s energy level. People kind of brush it off in thinking “He’s a boy. They’re wild and energetic!” I’m like “No, you do NOT understand. I am talking holes in the wall, biting holes in my curtains, literally climbing the walls, like nothing I have ever seen before!” We can’t have lamps in our house because he will break them. I am talking hyperactivity like I have never seen. Anyway, one of his therapists and I were talking…You know how they have to be so very careful about what they say because they are not “doctors” and can’t diagnose things per se…Well, she finally admitted to me that she has worked with well over 100 kids on the spectrum and Gus is “most definitely the most active” she has ever worked with. She told me that she has worked with a lot of kids with a lot of energy, but apparently Gus takes the cake. Honestly, I feel vindicated! That being said, it has been recommended and we have decided that Gus should see a clinical psychologist again. Clinical psychologists diagnose and treat emotional, mental, and behavioral conditions. A clinical psychologist gave Gus his diagnosis of ASD/SPD. We have no idea if there is anything more to his behavior than his ASD/SPD, but we want to rule anything else out. His abundance of energy and “hyperactivity” along with his extreme sensory seeking tendencies make it very hard for him to focus and pay attention to learn. Some days are definitely better than others, but we really want to make sure we are doing everything we can and dealing with and treating everything we need to for him to live his best life. Getting him in to see the clinical psychologist is going to be another of the many “jump through hoops” processes we come across in this journey; ESPECIALLY, with Covid-19 going on. I have to get an appointment with his primary doctor just to get the referral to a clinical psychologist and then hope they are taking patients anytime in the near future. It’s all a big headache, but we will get it done.

ASD is a SPECTRUM. No two individuals with a diagnosis of ASD are the same. Gus seems to be quite the little mystery. His therapists have told me more than once that he makes them work and think and really flex their skills. He can exhibit a behavior for a few weeks and then all of a sudden it’s gone for a few weeks, only to reappear again. Every time we meet a new physician or therapist, I know they think I’m nuts because explaining Gus is not easy. There are no simple answers of “yes” and “no” to their questions.

Right now we are dealing with a lot of crying. Gus is “minimally” verbal. Therefore, he cannot tell me, or anyone else for that matter, why he is crying. He will sometimes cry for up to an hour at a time. It’s real tears. A sad cry. Could this be a medical issue? Is he in pain? Is this an attention seeking behavior? Is this an automatic behavior? Is he being denied access to something he wants but cannot portray? Can I just for a second express how amazingly hard it is to watch your baby cry and have no idea how to make it better? It’s terrible. I am as “in tune” with Gus as a person can be, but that doesn’t mean I can always figure it out, and to be blunt, it sucks. We have a functional analysis (FA) on the schedule for this next week. A functional analysis is a completely controlled environment in which you try to provoke the undesired behavior. So, in our case, the undesired behavior is crying. This will at least HOPEFULLY help us narrow down if this is behavior related or perhaps medical. Either way, we are doing the FA, as well as having him be seen by his primary physician AND a pediatrician that specializes more in children on the spectrum. Of course, this is all pending referral and Covid-19 hoorah-doorah.

In awesome news, Gus is learning! He knows some shapes and colors. Don’t get me wrong, he is always learning, but I am talking preschool-type learning. He understands so much more than people give him credit for. Just because he cannot say a word absolutely does not mean he does not know what a word means.

We get words out of him here and there; primarily, food and drink requests, although he generally has to be prompted to do so. He very much prefers physical communication. He would prefer to take you and show you. He would prefer to place your hand on what he wants or needs.

We are still working on potty training to a point with minimal success. A lot of this is on me. Ideally, I would like him to be potty trained by the time it’s time for school, but I also have other goals I find more important and appropriate that he is more ready for in the meantime. It will all come together and work out. 

We had a lot of fun this weekend celebrating America. I never know how Gus will react to fireworks, but this year he loved them. In typical Amanda fashion, I could be seen with a punk in my mouth like a cigarette trying to light it with a lighter with a jumping and wild Gus holding my other hand with Ada looking on fairly impatiently. Thankfully, as usual, I eventually recruited the help of my family. Grandpa, Grandma, Aunt Emily, and Uncle Anthony were to the rescue. Gus likes fireworks a little too much, and would take off after them. Dane eventually returned from work and put Gus on his shoulders while he lit off some Roman candles, and Gus thoroughly enjoyed that. We had minimal meltdowns and tears, and only a couple of physical altercations.

We also attended the local firework display our volunteer fire department puts on at the lake. That went much better than last year with just a few tears, scraped knees, and some physical altercations in the wagon. The wagon was a God send, as we could strap Gus in there to watch. Fireworks happen when it’s dark and late, and Gus does not get “tired”; he gets absolutely wound up until he passes out from exhaustion. He and the rest of us enjoyed the show, and both kids were asleep by the time we got back to town.

We also attended a family get-together and celebrated some postponed birthdays. On the short trip there, Gus somehow got a bloody nose that went unnoticed until we pulled up. Therefore, I spent several minutes in the 100 degree heat trying to get his face cleaned up and his nose to stop bleeding. He had smeared blood over his entire face and had blood on his shirt. Thankfully, Dane was present to help hold him. Have I mentioned the hyperactivity and that he HATES having his face touched? That was an adventure that very nearly had me in tears.

Gus turned FOUR in June and his sister turned FIVE in March. It’s hard to believe.

As always, I have a whole lot of other things I would love to put into words sometime, but for now this is it.

Enjoy SUMMER, and I will try to get back to blogging on a more regular basis. It’s good for me.

       -AMomsFaithUnbroken

Summertime Update

Applied Behavior Analysis

What is it?

A therapy with a scientific approach to understanding and improving or changing behaviors. AKA Change the environment to change the behavior.

Wait…

What is behavior?

Seems simple enough, but before I go on, let me first express that often the word behavior is associated with “bad behavior”, but there is big importance in that little adjective before the word behavior.

Behavior is simply what we do and how we act.

The dead man’s test…

To better understand what a behavior is, we were taught to use “the dead man’s test”. Can a dead man do it? If he can, then it is not a behavior. I know, a bit confusing, but once you think about it and kind of test yourself it all starts to make sense.

How does ABA therapy work?

ABA therapy is not based on figuring out how and why one behaves, but replacing any given behavior with a more appropriate or beneficial behavior.

How is this carried out?

A lot of positive reinforcement and repetition.

The therapists chart everything, and I mean everything. Therefore, there is data to back up what behaviors are being improved upon or changed.

When & Who?

You most often hear about ABA therapy used for persons with autism BUT ABA therapy is also used for people in relationships and for elderly to help them better cope with memory loss and loss of certain abilities as they age.

It is important that children begin ABA therapy before the age of 4 to see the best results, especially in those with autism.

It is an extensive therapy with best results being carried out 20 hours a week.

ABA therapists are licensed psychologists that have completed a training program and obtained certification through the Behavior Analyst Certification Board. Based on what the U.S. Beareau of Labor Statistics reports, licensed psychologists must complete at least a bachelor’s degree. Psychology Today states that to obtain the Board Certified Behavior Analyst (BCBA) credential, the ABA therapist must complete at least a master’s degree and a specific number of hours of clinical education and experience.

ABA therapy is becoming more and more recognized as an effective therapy for anyone needing changes in behavior.

I was told by Gus’ first psychologist he saw when he was diagnosed with autism spectrum disorder and sensory processing disorder that ABA therapy was seen as the “gold standard” for children with Gus’ diagnoses.

The Controversy

ABA therapy is a very controversial subject among those with autism and parents of children with autism. As I do with everything in life, I extensively researched, studied, and consulted. Per my findings, I decided ABA therapy would be beneficial for my son. I read the horror stories from those that received the therapy in the past, and those who are vehemently against it. Thankfully, things have changed in the medical field and things aren’t as they used to be. There is still some controversy even with ABA therapy today, but I stand by my decision and am glad I did because at three weeks in we are already seeing amazing things.

Also, nothing is addressed or worked on in therapy without MY consent. I am 100% welcome to attend Gus’ therapy sessions, and I do.

Gus’ ABA therapist has and is working hard to build a relationship with him. She will be a big part of his life for a long time. He adores her and that will make things that much easier.

During this journey with my son, I have seen him with a lot of therapists. Some go through the motions, but then there are some that go the extra mile.

ABA THERAPY & GUS

What is Gus working on in ABA therapy? A little bit of everything. We set specific goals, and he is already nearing completion of some of them. He is working on eating with utensils and keeping his hands out of his mouth while eating. He is working on following verbal commands. He is working on using his voice to request things. He is working on communication in many aspects. He is working on conquering his fear of public restrooms. He is working on generalizing things. He is working on joint attention. He is working on appropriate play with others. He is working on so much more. All of his goals are broke down into steps, and as he masters one step we move on to the next until he has conquered the task and goal. He is thriving!

ABA Therapy & The Family

My husband and I also attend sessions with Gus’ ABA therapist to be educated in ABA therapy itself, as well as what we need to do at home to apply what he is doing in therapy at home. Gus is very smart. If we don’t have the same expectations of him at home as are expected of him in therapy he will figure out that he just has to work in therapy and home will be a free for all. ABA therapy also works with all of his other therapies and therapists to be sure everyone is on the same page and that he is shown consistency in all aspects. It sounds like we will also have meetings with all therapists at once here and there to go over things.

Applying things at home takes a whole lot of patience and a whole lot of time. While I am not perfect and sometimes let things slide, I try to remember that all of this hard work now while he is young will more than pay off as he gets older.

Our Schedule

Gus has been receiving ABA therapy for 3 weeks now. We started at 1 hour a day 3 days a week and quickly moved to 1.5 hours 4 days a week. This coming week, we plan to do 2 hours 3 days a week moving to 3 hours a day 4 days a week in July and going from there.

Gus also receives speech therapy and occupational therapy at home on Mondays and Thursdays in the morning before we leave for Rapid City. He also still receives occupational therapy, speech therapy, and physical therapy once a week at LifeScape.

Yep, that means we travel 83+ miles (166 miles round trip) up to 4 days a week. It’s been a spendy venture, but once we get going insurance will reimburse mileage; it just takes a while. I also had to quit my job, as there was just no way to schedule work around therapy and therapy around work. I still fill in when I can, though.

I take Ada (Gus’ older sister) with us 1-2 days a week. She attends part of therapy with him and eats lunch with him and the therapist and then works on joint play with him. Then, Ada and I go play outside, as she understandably has a very hard time keeping quiet and allowing Gus to focus. The other days of the week, Ada attends daycare.

It’s hard on me…and all of us, really. BUT what’s important to me is how Gus is handling it. As long as it isn’t too much for him it’s not too much for me. We are allowed to back off on therapy at any time we feel we need to. Gus is thriving right now. I keep in mind that a few years of this very intense schedule and intensive therapy will pay big later.

I also failed to mention earlier that Gus is the very first ABA therapy patient to be accepted at LifeScape in Rapid City, SD. Until now, ABA therapy was not offered at LifeScape’s Rapid City location. For a long time, we were adjusting to the fact that we would have to move to Sioux Falls, SD part time for an undetermined amount of time. Talk about STRESSFUL, but we were ready and willing to do what we thought best for our family, and kept moving forward, which is why Gus was accepted as the first patient; we already had everything done and ready to start at LifeScape in Sioux Falls, SD, so they were able to just transfer all of that information to their Rapid City campus.

I’ll keep this shorter by just sticking to the topic of ABA therapy in this blog post. We have a lot going on, and I have lots I’d love to share, but will do so at a later date.

Thank you for reading and taking the time to learn a little more about a life a bit different.

I’m learning all the time, and am always happy to share.

Signing off now.

– AMomsFaithUnbroken

ABA Therapy

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