…through ASD testing

I come from a long line of proud, but mentally ill people. Some things we are born with, some things are the product of our experiences, these are all things I considered before getting pregnant.

My father is undiagnosed, but very much on the spectrum. Through our journey with this, I have learned I am too. I am also diagnosed with OCD (hereditary), ADHD, and C-PTSD. My mother has been diagnosed with Bipolar Disorder (also hereditary), although her counselor suspects something different. From what we know of Christian’s family history, there is also ASD and Bipolar Disorder.

All of this to say, we talked thoroughly before getting pregnant about what our life could look like if our children inherited these disorders. We both agreed that if our kids need extra help, we would go above and beyond to provide it, educating ourselves on how parenting a child with a disorder differs from neurotypical parenting.

During my pregnancy, I signed up for the Shawnee Healthy Families program. We were not yet married, so my single income was low enough to be accepted into the program. This program provides a home visitor who essentially checks on you and the milestones your child is going through, provides items you may need like crib, car seat, diapers, wipes, books, toys…Basically, this program is the village we desperately need. This program can also refer participants to Early Intervention (physical, speech, developmental, and occupational therapies), which is designed to help those 3 and under.

When Olive was 6 months old, she was still not crawling or pulling up. When she did start crawling, she only used one leg and then used the other to “pivot”. At one of our home visits we went through a milestones checklist, and I expressed my concerns that Olive was behind physically. She also had a few little behaviors that made us consider her to be on the spectrum, but at her age it is very hard to tell.

Anyways, we got the referral to Early Intervention. When we went for a Wellness Check, our pediatrician also sent in a recommendation - if you are not in the Healthy Families program, you can go through your child’s pediatrician for these referrals. For us, during this time services were free/covered by our insurance. We keep hearing that eventually it will be a sliding scale cost system, but so far these therapies have not cost us anything.

Olive was evaluated by speech, development, and physical therapists. It was declared she was considered “cognitively unmotivated”, a.k.a. lazy. You could put something in front of her she LOVED, and she would not move towards it. You could take away all her toys so that she would have to pursue more…nope, she would just slap the floor as entertainment and be perfectly content. Essentially, you could NOT motivate this kid to do anything because she was just always happy hanging out.

At that 10 month mark, her only major delay was with physical therapy. Just before her first birthday we started bi-weekly sessions for a few months, but it quickly became clear Olive needed sessions every week in order to retain what she had learned. She started crawling somewhere in there, then one day right after a session when I went to put her down for a nap, she pulled herself up and stood in her crib. We eventually got to a point where she would “walk” by holding on to surfaces like the couch and just cruising.

But when it came time for walking on her own, Olive decided Ms. Jenny (her therapist) was the ultimate enemy. If we tried to manipulate her body to help her walk, learn new motions or movements (especially hand over hand) she would lose her mind. Swim class was good until we tried to get her to climb up the wall and jump back in - that was too much like PT. We tried a gymnastics class, which was essentially a giant Circuit - lost her mind.

At 20 months old and 8 months of physical therapy, Ms. Jenny saw that we were a bit stalled, and so she brought in her assistant. She also noted that a lot of Olive’s struggles came from the sensory part of the exercises. After one session with the assistant, Olive started walking, then running and climbing.

At 22 months or so, we did another round of evaluations to close out our case. Olive was borderline on developmental and speech, but we all agreed she wasn’t at the point of needing services and what she did need help with, we could work on at home. It’s important to note that Olive is not in daycare and does not see children or play with children on a regular basis, and so it makes sense for some slight delays.

Seven months later, and it was becoming apparent that Olive was very much behind other children her age or younger in terms of speech. Olive’s way of speaking is typically echolalia, she repeats phrases, songs, or words how she learned them. This is why she passed speech the first round, because she was able to mimic the sounds back. However if you ask her what she wants, what something is, or even call her name she would not always respond. We started noticing her acting out show scenes or reciting monologues from Bluey, Miss Rachel, and that was an immediate flag for us that this may be a spectrum disorder. That and flapping hands, her love of running back and forth while clapping, rejecting any blanket that is not fuzzy, etc.

So we had our doctor and Healthy Families set up Early Intervention again, and in the meantime our pediatrician suggested an Autism assessment as Olive was about to turn three, and we need this information for her future pre-school. After completing the EI evaluations, it was agreed that Olive was fine physically, but at 30 months old her communication abilities are that of a 14 month-old, and about the same with development. Olive plays in a way that is different than other children, but it’s also in a way that hints towards ASD or OCD.

So, the Autism assessment. I went over this in our stories, but this was hands down the worst medical experience I have encountered.

Around here, ASD assessments can take 12-18 months just to be seen. Knights of Columbus is the gold standard for these, and we are on the waiting list. But then our pediatrician told us about a facility in Marion that was getting people in quickly, LifeThrive. Our Healthy Families coordinator clued us in that a business had taken some of the folks who worked at SIU and SIH ; that’s why there was such a wait. Looking at the reviews I wasn’t too impressed. It seemed like their mental health services were tailored more to adults, I actually did not see a thing about toddlers. But, Olive will be started pre-k in 8 months, and if our therapists had an actual diagnosis, they could adjust her therapies, so we went ahead and agreed to give LifeThrive a try.

Before we could be seen, the business (going to shorten to LT) sent us multiple questionnaires that had to be completed before we could be seen. Two red flags during this process: 1. one of the questionnaires was for PTSD, and another that had nothing to do with Olive, and 2. the main intake packet was over 120 pages on mobile, and on page 7 you HAD to provide a credit card so they can charge the $180 no show fee. I reached out to them and stated we were literally only coming for the evaluation and assessment, we have services already set up through EI, and I did not feel comfortable with them having my credit card number stored for a one time event. They absolutely refused to waive on this.

The assessment was scheduled for the following week. As we entered the building, my gut just told me something was off - and of course I was right. The receptionist let us know before going into the waiting room that the other folks in there “smelled like pot”, and apologized.

Once we were finally called back, the person we met with informed us we actually were not doing the assessment today, we were doing intake; this meant going over EVERY QUESTION in that 120 page document AGAIN. There was nothing in this room for a child to entertain themselves with, and the intake person made a comment of “Oh I thought about grabbing toys out of the visitation room but now the door is closed so I didn’t”. So, while I tried to wrangle my toddler from touching many breakable things, I had to re-answer these questions. On some of the questions, it was hard to answer because toddler behavior is also similar to Autistic behaviors. When I expressed this to the intake coordinator she stated “It’s been so long since I’ve had kids, I actually don’t know any of the milestones for those ages”. And again, the red flag waived in front of my face.

The intake coordinator then stated she would take my answers to her Director, who would make a decision on what testing we needed and then she would come back and tell me. I asked why the Director had not already read over this as I had filled it out a week ago - no response. Coordinator comes back and says they want to do an Autism assessment, behavior assessment, and possibly one for ADHD or OCD, which we will now need to schedule.

I was feeling a bit peeved - this was a complete waste of time, and money grab if I am being honest. I could have easily verified this information over the phone, or they could have just read our intake and then at that session tell us the recommendation, but instead it felt like they were redoing the questionnaire for the sake of filling time to bill.

But, this diagnosis is crucial in us helping Olive. So, the next week we went back for the ASD assessment. As I sat in the waiting room (which again, has nothing for children to play with) trying to keep Olive still and away from the stairs, I watched the man who was to interview us walk by several times. 15 minutes past the appointment time, he finally called us back.

Guess what the assessment was? Another questionnaire! With almost every question already answered in the intake process! At the end of the session, he let us know we had the second assessment to do - he called it ADHD testing, but that was incorrect. He also offered we could do a virtual visit - which apparently had been an option the entire time, instead of having a toddler run around and being stressed. This was on November 6th, and he let me know because of staffing and holidays, the person who administers the test would be unable to get us in until December 2nd. I figured 3 weeks is better than 12-18 months, and scheduled the appointment.

I did consult with our pediatrician who confirmed Olive is too young for ADHD testing. In the back of my mind, I was concerned that all this “office” was doing was going through typical checklists without consideration to the age of the child.

The last week of November I realized we had not received any confirmation texts, emails, or calls. We also had not received the results from the first test. I had previously received a text from them and email, so I contacted both to confirm our appointment. No answer. I had logged into the type of portal they have, that displays appointments - nothing there.

On December 2nd (our appointment was supposed to be at 2pm), I called as soon as they opened to confirm - I didn’t want to get hit with the $180 no show fee if I didn’t get the link for the virtual visit. The receptionist answered with “LifeThrive hold please” and then hung up on me. I called back twice within two hours of the first call, both times I got a voicemail that was full. I tried sending more texts and emails. 2:00 p.m. came and went with not a word. I was confused, frustrated. Neurodiverse people are frequently allowed to slip through the cracks of care, and it was happening to my child.

About a week later I was on one, and decided to try to resolve this - at least get my child’s test results. I again sent emails, texts, and called (full voicemail). I was so frustrated I took to Google Reviews to warn folks with toddlers this place is NOT it. And guess what?

They only responded to the review!

At this point, I think I was so heated I probably looked like Anger in Inside Out. The owner had plenty of time to argue with me about the test they would have administered, that it would not be for ADHD…and then that was it. They had my name, knew I was pissed we fell through the cracks, responded to the review - then NEVER contacted me. I reached out to our pediatrician to try to get the results for us, but LT was still being a hot mess about it.

In the mean time, the Williamson County Education Services had requested a conference with EI and myself so we could discuss how Olive will transition into Little Lions in August if she is still needing services. I knew I needed those test results ASAP, and decided I was going to be a Karen if I had to in order to get them.

So, I called the office again, and got the voicemail - but at least it wasn’t full! I asked to speak to the Care Coordinator because I just wanted our results at that point, no services no appointments just results.

I received a call back from Elena fairly quickly and was told that the receptionist was new and they were just now seeing all my texts and emails. The thing is, the receptionist has nothing to do with the fact our test administrator did not click save when it came to our appointment, nor was it her fault that no one had followed up with us for over a month at this point.

Anyways, Elena was apologetic and asked if she could make an appointment so that I could speak to the Director about what happened here, and they could also give me my results at that time... 8 days later, 17 days past the mishap of scheduling.

What I didn’t know is that they did it this way so they could charge me. Yes, our apology/explanation call was being billed.

We had a virtual visit scheduled for 12/19. As most of you know, the following day (12/20) I had to be hospitalized for hyperemesis (intense vomiting) so I was not feeling great. Evonne, the director, showed up on the virtual visit call 16 minutes late. Honestly readers, all I could think was “the audacity of this woman”.

When I jumped on the call, she stated I needed to be on video. I explained to her that I was violently vomiting to the point I could not sit up, so no I did not want to be on video. She flat out told me had to see me on the video in order to bill insurance, and would not proceed with giving me the results until I got on the video.

There was no apology. None. She also kept calling my daughter Olivia, so that tells you how thorough this place is. She read off the results to me, and then said “we can’t give a definite answer on autism because there is still another part of the test to do, when do you want us to schedule you for that?”. I flat out said I did not want to schedule anything further with that office due to the trouble and treatment we received. She asked what I meant, and then proceeded to tell me there were no messages or phone calls that went unanswered (BECAUSE YOUR VOICEMAIL WAS FULL), she was the one who answered the Google review but no answer for why she did not contact me after seeing it, and that they had not dropped the ball because they didn’t miss their session as it was never scheduled…which was the point! Evonne proceeded to tell me they have a work flow so that people do not fall through the cracks. I said you literally just did! Not only did you not click save on an appointment, our testing was November 6th and this is December 19th, the ONLY reason you are even going over results and trying to schedule with me is because I contacted you!

Evonne then refused to send the results to me or our referring pediatrician, stating that because I was refusing the second assessment, the test was incomplete. Legally, she cannot do this, and eventually that evening she emailed the results to me. She had an attitude the entire call, nothing but excuses or flat out denial for the mishandling of this. The results we did receive were what we already knew - she is delayed in communication and development. This whole thing? For nothing.

So to wrap up this incredibly long tale…the best I can tell you is to wait for Knights of Columbus or the institute in Chicago to perform these tests. Ask your pediatrician to contact Early Intervention if you have any doubts or concerns your child isn’t hitting milestones.

While I do know people who have had a much better experience with LT than we did, I absolutely cannot recommend them for any kind of toddler mental health or disorder care. For now, we are just continuing our therapies and Little Lions will make a decision on which class she is in based on where she is at by August.

Thanks for reading!