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!

Birth to 3 and our IFSP

IFSP
(Individualized Family Service Plan)

An IFSP is a plan that guides and supports your efforts to boost your child’s development up to age 3. After the age of 3, this turns into an IEP. (More on IEPs later.)

My husband and I met first with our region’s Birth to 3 coordinator. In the very beginning of the meeting, we were to create our “support circle”. This was accomplished by letting our coordinator know who we have that we can talk to or open up to about Augustus. At first, I felt awkward and like our circle would be pretty small; but once we got going, I was able to come up with so many individuals who have helped us in so many ways. I felt so much gratitude after completing that very first task.

We then went over every detail of a day in the life of Augustus to see where and what he would benefit most from occupational and speech therapies. After that, we ranked the things he needs support for most from greatest to least. This list will become the priorities set for his therapies.

Our Birth to 3 coordinator is our advocate and in our corner. We were told we can start or stop anything at any time. We are in control. Our Birth to 3 coordinator will also help us to find other programs and opportunities that may be available to our family and/or Augustus.

We then met with our region’s Birth to 3 program coordinator, a representative for our school district, and the speech therapist that works with our school district. We discussed everything we went over with the coordinator and then the school rep and speech therapist told us their thoughts and we set up a time and place to get therapy started.

For now, we will be traveling to the school for therapy once a week. The speech and occupational therapists will work together for now.

Gus doesn’t have a very long attention span at all, which is something we are working on and have seen improvement in. Therefore, we are meeting just once a week for now and only for half hour periods. He’s a busy dude, a lot goes on in those half hours.

On the IFSP, suggested by the Birth to 3 coordinator, for Dane and I is to have a date night once amonth. We haven’t penciled that in just yet, though.

Good News

As I explained in previous posts, we are waiting to be seen for Augustus’ official autism evaluation. This evaluation gives a clearer picture of where Augustus falls on the ASD (autism spectrum disorder) spectrum. This will help us to see what things may work better for him with regard to communication, learning, etc. This evaluation will also give us an “official diagnosis”, which will help with health insurance and support programs available to us.

These evaluations are four hours long and involve a psychiatrist, a speech therapist, an occupational therapist, and a physical therapist. Therefore, they are extremely hard to get scheduled, and it generally takes months (sometimes even a year or more) to be seen.

This evaluation will take place at LifeScape. There is a LifeScape in Rapid City, SD, and Sioux Falls, SD. The Rapid City campus is much closer to us, but if we were to schedule there, we would have been looking at well into 2019 before we could have the evaluation done. Keep in mind, it was June/July 2018 when we were working on getting on the schedule for this evaluation. Sioux Falls was able to get us in late November 2018, so we decided that was the better choice.

The good news is that I received a phone call and was told as long as I got my paperwork sent in within the next few days that Augustus could be seen in mid-October rather than late November. Needless to say, I got my butt in gear and got that paperwork done and sent! These appointments are rarely cancelled and rarely rescheduled as they are so hard to get in the first place. We are one of the lucky few. Woo-hoo!!

Augustus also had to have an official hearing evaluation three weeks minimum before his autism evaluation so they would have time to receive the results and go over them. They do this just to rule out any hearing problems that could be causing or exacerbating any of Augustus’ issues and problems. Thankfully, his primary care physician is amazing and when I called him to let him know we needed to be referred for one he got it done the very next day and had us scheduled for one in Rapid City within the next couple of weeks.

We got his hearing evaluation done, and his hearing is completely fine. I was almost 100% sure this would be the outcome. Once we received the results, I had mixed emotions. The fact that his hearing is completely normal is a good thing, but it also means that all of his listening issues are cognitive. On the flip side, at least there are no hearing problems to add to the things we are already trying to sort out.

I look forward to and dread his autism evaluation. It will be nice to see where he falls on the spectrum, but it will also show me a little bit into what the future might be like for him, and that scares me. I keep in mind that no matter what we find out, nothing changes. He’s still the same Gus I know and love, and literally nothing, to include any diagnosis, will change that.

-AMomsFaithUnbroken

As you will see, and as I have learned, there are a whole lot of acronyms in the special needs world. I sometimes even quiz Dane on a few here and there, just to make sure we are staying on top of everything we are doing and are able to explain to others.