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 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