Why can’t you just tell me what’s wrong?

Sorry this is a day late – had a friend get into town yesterday afternoon and was busy visiting with her and wasn’t able to finish this until today.

Alright so this story starts back in September of 2016.

For those who don’t know me well and who don’t know my son Wyatt well we’ve always struggled with keeping him up with his peers and we’ve always struggled with tantrums and behavior issues. Now before you start saying that he’s only 3 (going on 4) and toddlers have tantrums and they all develop at different rates, thank you for this very helpful and meaningful advice. However when your kid will drop to the ground outside or in the store and immediately try to slam his head into the concrete/tiled floor I think it goes beyond the fact that toddlers have tantrums. I’m not even exaggerating these instances, we’ve had on numerous occasions had to snatch Wyatt off the ground before he could bash his head into the hard surface and cause great harm to himself.

Now for those who would suggest that we try the “cry it out” method of parenting: I will tell you that I am a huge supporter of this method. My daughter does on many occasions throughout the week cry it out when she’s gotten overtired and doesn’t actually want to go to sleep. However this approach is useless against Wyatt. We have done what we can to the point of letting him throw his tantrum (head banging and all) in his room and on several occasions he went strong for over four hours and still showed no signs of letting up.

So as we tried to deal with this the best we could – mostly with lots of stress and frustration on everyone’s part – Wyatt had his 3 year well check with his Primary Care Physician. We love his doctor, she is truly awesome, but she is however not an expert in all things. So knowing that there was clearly something going (something more than normal toddler behaviors) she started the process of getting us to a specialist. The first person we were sent to was a Developmental-Behavioral pediatrician that was about 30-45 minutes from us. So really not horribly far to go to get answers. Only problem was that there wasn’t an opening until April. So between the months of September and April we could do nothing except exist as we had for the last few months with no answers and no good way to actually handle Wyatt or is tantrums. We had hope though, we had an appointment and that appointment would give us answers.

When April finally did roll around – at which point Wyatt had improved slightly at least in the realm of banging his head against things – we were more than ready for his appointment. An hour and a half long appointment and dozens of questions and detailing out Wyatt’s life the doctor – the specialist – said rather definitively that Wyatt did not have Autism and that while she couldn’t diagnosis him with ADHD because of his age that he would get that diagnosis in a year or two if his symptoms didn’t regulate per his age. In the meantime it was recommended that we take Wyatt to therapy. This could help in the interim to address his behavior issues.

So we had a direction to go. We had a tentative diagnosis. The problem was that actually getting him in to see a therapist was much easier said than done. Most places had waiting lists that were years out. Something that I found more than frustrating. How can there be such a lack of qualified people to help children who need therapy? Especially in the cases where the situation might be time sensitive? At the time we were under the belief that given time and therapy Wyatt would grow out of his behaviors. If that was truly the case then what was the point of being on a waiting list for a year or more? It was not going to help us in any way because there was a possibility that at the end of the waiting list (when it was finally our turn to get an appointment) his behaviors would be resolved. If they weren’t then we would’ve spent a year in stress and frustration trying our best to manage without any help or direction. I can’t imagine what that would be like. How is it okay to allow this to continue? How is it okay as a society to leave parents and children waiting living a life that isn’t good for any involved? There has got to be a better way to get those who need this type of support the help they need when they actually need it.

Well back to my story. We did manage to get Wyatt into therapy back in June. Any guesses on how this started? You guessed it! With us detailing out Wyatt’s life, with explaining every aspect of his life and our lives together. We had to go over his routine, things he doesn’t like, things he does like, things that trigger his tantrums, things he does, things he doesn’t do, areas in which he is delayed, areas in which he excels. At the end of the first hour long appointment – in which we didn’t even finish all of the intake process – the therapist brought up the possibility that Wyatt might need further testing by Children’s Mercy’s Neuro-Developmental department.

Okay, fine, I called up Children’s and asked about getting an appointment, at which point the person on the phone asked me what for. Apparently him needing tested for neuro-developmental delays is actually too broad a category and they needed a more specific area to test, such as Autism (or more specifically Autism Spectrum Disorder). So I had to call the therapist back to get more clarification on what she actually wanted him tested for. Can I just say how stupid it is that so much responsibility is placed on the parent to get these appointments right? We are responsible to not only fully understand and comprehend what the doctor is telling us (generally in not so simple terms) is wrong with our child and then relay that information accurately and effectively to another person who may or may not have medical knowledge so that they can in turn make a decision that will then impact the future of your child.

Alright, stupidness of appointment scheduling aside we did figure out that, yes, we in fact did want Wyatt tested for Autism Spectrum Disorder. Now to get such an appointment through Children’s requires us to gather and fill out information which we then have to mail back to them so they can evaluate it. Once that is reviewed they will determine if you qualify for an appointment. At this stage they will send you EVEN more paperwork to fill out which has to be finished and sent back in before the child is placed on the waiting list for an appointment. The waiting list itself can take up to several months for the child to reach the top of the list and get an appointment.

Now we made our current therapist aware of this process and the length of time it would take to get in for an appointment so to potentially help offset all of this filling out and waiting around she also recommended us having him evaluated by the psychologist in the office to see if he thought Autism Spectrum Disorder was an appropriate diagnosis. This appointment actually only took a little over a month of waiting. We scheduled it in June and the appointment was at the beginning of August. Once more we were hopeful that we would get answers, that we would be able to get the right help for Wyatt that would help us help him.

Going in we were told that the appointment would take at least an hour and a half. It took almost exactly an hour and a half. Any guesses on what we did for that hour and a half? That’s right! For the third time in almost as many months we detailed out Wyatt’s life. Everything we talked about in the first two sessions with his therapist we talked about again with this new doctor. When there was about half an hour left to this appointment the doctor’s supervisor (probably not the correct term) and was given an overview of what was talked about in the first hour of the appointment. At which point the two doctors stepped out to confer about everything that was discussed and how they wanted to proceed. When they returned we were told that Wyatt has a “Unspecified Neurological Disorder”. What exactly does this mean?

Well it means that after almost a year of waiting and bouncing around different appointments – with more waiting to be done in the next several months or more – they agree that there is something wrong with Wyatt. They can’t say what is wrong with him because even after everything they don’t have enough information to give a definitive diagnosis, but they will continue to see him and gather information in order to be able to make the diagnosis that actually stands between us and getting him the correct therapy. The therapy they think Wyatt could actually benefit from is actually really hard to get the insurance companies to agree with meaning that he will first need to be given a diagnosis with all the correct documentation and data in order for the insurance company to agree to pay for it.

This is another thing that baffles me, diagnosis aside, how can the treatment that is going to help my son be denied because he doesn’t have the right diagnosis? If the doctors all agree that this is what will help him and this is what will get him to the end point where he’ll be able to socialize with others and excel at school then how can it not be approved? How can it not be accepted? How can they tell me that I can’t pursue that course of treatment for my son simply because he doesn’t have a certain diagnosis?

There is something fundamentally broken with our society if this is the common experience parents have to go through in order to find not only the right diagnosis for the child, but also the right treatment. It should not take almost a year to get your child into treatment, the treatment should not be denied simply because the doctors can’t make a definitive diagnosis based on an hour to an hour and a half appointment.

So this post was definitely more on the ranting side of things with a decent amount of complaining, but I did want to share what we’ve been going through in this last year. I wanted to get it all out because it has been one of the most stressful and frustrating experiences I’ve ever had to go through and my sympathies go out to any parents going through the same struggles as me. I feel your pain and all I can say is we’ve got to keep hanging in there. We just have to keep going and doing until we get to the right doctor who is going to make the right diagnosis and get our kids the right treatment. That’s our burdens as parents, to do everything we can to help our children be the best they can be.

Thanks for reading! I hope everyone has a great week!

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