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

Whelmed…a Bit Overly

I knew going in that this was all a process; but not just a process, but a never-ending process. Never-ending…

It all started the day of my son’s 2-Year-Well-Child Exam; questions, lots of questions. Then referrals. Then phone calls. Then more referrals. Then more phone calls. To this day, I am still in this never-ending cycle; but wait, there’s more. The paperwork. I cannot even begin to accurately describe how much paperwork. Paperwork sent to me before his referral appointments. Paperwork filled out at his appointments. Paperwork filled out for LifeScape. Paperwork filled out for the State. Paperwork filled out for the school. Paperwork I have to have others do. Then, scheduling the appointments themselves is a challenge between work, my husband’s work, when I have daycare, when I have someone to watch my other child, having the money to put gas in the car to get to appointments, and so on. So, yes, I’m a bit overwhelmed. I’m assuming I’ll get used to this, and it will become my new normal. I have so many new contacts in my phone…

As I mentioned in my very first blog post, I am what I like to call a “seasonally single parent”. In other words, in the months of March – September my husbands work comes first, no matter what. He does his best to be where he can when he can, but him working is crucial for us to keep things as they are with my getting to stay home 4-5 days a week. Now that we know that my son needs physical, occupational, and speech therapy, it is even more crucial that we keep our schedule this way, just to be able to have one of us available to take him to appointments. It’s hard. My husband is sometimes gone several day sand nights at a time, and almost always gone sunup to well past sundown. I consult with him as often as I can when it comes to making decisions about our children, but often times it leaves a lot of the decision making to me. I’m sure that one day all of his extremely hard work will payoff, and we will be able to live comfortably. We have added expenses now, but we will be able to make do. I’m sure of it. 

The Process

One would think that you see that your child has developmental delays, you then see a doctor, get a diagnosis, set up what needs to be done, and its done, but that is in no way the case with autism. After expressing our concerns, we were then referred to LifeScape in Rapid City, SD, for an autism “screening”. At this autism “screening”, we learned that he had many “markers” for autism and that he would need three separate evaluations for physical, occupational, and speech therapy, and that he would need an autism “screening”. Does this even make sense? All we learned at his screening was what we had already learned at his 2-Year-Well-Child Exam, – that he has developmental delays and likely has autism. They could not tell us if they felt he had autism or if he likely had autism or anything of that sort, just that he needed an autism “screening” because he had so many “markers” aka red flags. I have to admit, immediately after this “screening” I was super confused. What I do know now, is that he is not “officially” diagnosed with autism as of yet even, but he is starting therapy immediately, as he definitely needs help. Like I said, it’s a process, a sometimes frustrating one. They informed us that right now the diagnosis doesn’t really matter, he just needs help. I agree…

We then had 3 separate appointments at LifeScape in Rapid City for his therapy evaluations. There were three of them; physical therapy, occupational therapy, and speech therapy. It was found that he needs to have all 3 therapies on a regular (most likely weekly) basis starting as soon as possible.

Now, the autism “evaluation” is scheduled for mid-November at LifeScape in Sioux Falls, SD. We chose to have him evaluated in Sioux Falls, SD, because the Rapid City LifeScape is scheduled out on autism “evaluations” until 2019 sometime. So, come mid-November, he will be seen at LifeScape in Sioux Falls, SD, where he will play and interact with a therapist, a physical therapist, an occupational therapist, and a speech therapist all at once in a four hour time frame. After this, he will have an “official” diagnosis and we will know where he falls on the spectrum and have a little more information. He is scheduled to start therapy before this evaluation, as mentioned above.

Then South Dakota has what they call the Birth to 3 Program. Your child is evaluated at the local school and you are assigned a caseworker to help advocate for your child and to explain and advise you of the resources out there for families with children with special needs. You also work on your child’s plan for education, which is revised and reworked very often to keep your child on the right path for the way they learn. We start evaluations for this tomorrow, and have all the paperwork done, so far. There are also opportunities for therapists to see your child in your home or at daycare until they turn the age of three.

It seems so backwards. I am meeting at the school regarding education for my second child before my first…

My Army

As overwhelming and confusing as this all is, I am certain we will get a grasp on all of it and it will all become second nature. That being said, there is absolutely no way that things would have worked out the way that they have so far without the help of my family, my daycare providers, and my bosses at work. My parents put in a lot of time and help me out a lot. They are not just “watching the grandkids”. It takes extreme patience and understanding to watch my son. They aren’t just watching him, but learning to work with him. He absolutely cannot be left unsupervised unless he is in a completely “Gus proofed” room, and sometimes even then he can find something unsafe to do or get into. He cannot verbally communicate, so it can be very frustrating to figure out what he wants and needs. He is very curious and has some destructive behaviors. He never stops moving unless he is sleeping. Plus, he has a 3-year-old sibling that needs attention, too, which is so important to provide as well. I can’t just take both of my kids places. My son will “bolt” aka run off without return or any regard for danger etc. Therefore, doing something as simple as getting a haircut or going to the grocery store can really become a chore. My parents and my sister are what make these things possible and keep him safe. For that I am already eternally grateful and know just how lucky and blessed I am. This goes for daycare, too. I know his daycare providers had to have noticed that he had some problems. I let them know what was going on once we knew, and they thanked me for telling them and have been on this journey with us 100%. Seriously, how amazing is that? I know that my son requires more work and attention, and would completely understand if they felt he’d be better off somewhere else, but they have taken this on and are willing to help in any way they can. That’s love. I know that my children’s daycare providers truly love them. That in itself is one of the biggest blessings a parent can find in a world full of so much scary. My boss and coworkers also deserve praise in being so willing to listen to me, work with me, work out a schedule with me, and always make time to talk to and interact with my littles when they are around.

Although this is a never-ending process and a life of constant learning, adjusting, and compromising, I know that I have plenty to be thankful for. Sometimes, it just helps to blow off a little steam.

– AMom’sFaithUnbroken