Help me think this through - testing

[mamashark]

I know many of you have pressed me to get my son (4 years old this past January) formally evaluated several times and I do have a message into the pediatrician about his behavior and my concerns about waiting until next month to follow up on the diet/OT stuff we've been doing.

 

Today I carried him around Aldi's while he cried at the top of his lungs and refusing to walk because I said no to a lunchable. (thankful for sympathetic fellow shoppers) Then a switch flipped and he was giving kisses (to make me happy) and speaking pleasantly by the time we got to the register to pay. I avoid going out with all 4 kids without my husband because his unpredictable behavior can become a huge issue for me to manage by myself.

 

So thinking through this - I've been depending on a pediatrician so far, but if I ditched the conventions of medical hierarchy, who do I go to? What test/evaluation would give me the most bang for my buck? And what will a label give me other than arrows to interventions? Can I not start with the interventions? 

 

I realize that his behavior is indicating that he doesn't feel comfortable in his body for some reason - whether physically or mentally. I also realize that if he was happy and felt "good" that he would not act this way. So how do I help him today? what can I do NOW to help him feel better? 

 

I also realize that whoever I go to for evaluations/interventions will only give me a piece of the puzzle based on their experiences/trainings, etc., so how do I know which interventions would actually be best? OT's look through one lens while a nutritionist would look through a different lens, etc. The last time we went to a psych (for older daughter, diagnosed with adhd at the time and my other concerns were blown off) we got a diagnosis and the dr. prescribed medication with a strong warning against trying any alternative therapies. I accepted that for a year before I started looking for alternatives but I am skittish about psych's because of that experience. In fact, this was the same Dr. who told me my son was exhibiting "normal" behavior.

 

My husband is currently without fulltime income (we're staying with family for the short term while he substitute teaches and looks for a teacher position starting in the fall) and we don't have traditional insurance. I cannot use state services at this time because we are only visiting at the moment - we are hoping to get a fulltime job here, then become residents, otherwise we'll be continuing to travel with a different job, so we can't officially "move" here yet.  (sorry for the complicated explanation) So hopefully come fall things will be in a very different financial position, but I have to work with what I have at the moment.

 

So now, those of you looking back from the other side of evaluations, therapies, etc., what would you tell me to do? 

Edited April 21, 2017 by mamashark

[PeterPan]

You want an eval at an autism clinic, and there's going to be a wait. They'll have a screening process and typically at least a 6 month wait. They'll usually want to pre-approve you with insurance. 

 

I don't understand your residency issues, but you're going to have to solve it. If he's unemployed and your income is low, you probably qualify for some kind of state medicaid for children program. I would call the doctor, find out how you qualify for that, get them on it pronto, find out who they require you to go through to get autism evals, and get it going. It is unreasonable to leave children without medical coverage when the govt has services for this. You are here and they require coverage.

[mamashark]

You want an eval at an autism clinic, and there's going to be a wait. They'll have a screening process and typically at least a 6 month wait. They'll usually want to pre-approve you with insurance. 

 

I don't understand your residency issues, but you're going to have to solve it. If he's unemployed and your income is low, you probably qualify for some kind of state medicaid for children program. I would call the doctor, find out how you qualify for that, get them on it pronto, find out who they require you to go through to get autism evals, and get it going. It is unreasonable to leave children without medical coverage when the govt has services for this. You are here and they require coverage.

 

We have insurance coverage through a health sharing plan that does not have much "mental health" type coverages. I'll have to call to see what they will cover exactly. 

 

-edited for privacy-

 

My frustration with getting on that waiting list isn't the potential label, it's the not treating or doing anything for all that time. Is that really my best/only option??

Edited April 24, 2017 by mamashark

[PeterPan]

Yes, see what your sharing plan offers. That would just be horrific if they don't cover for autism. You'd want him off the policy and onto state medicaid. What does Texas cover? Can you contact the county you're in and ask? This is probably not an unheard of situation.

 

The dc is 4, so the ps is legally required to do evals. They'll be crap and then you can use the dispute process and file and get private evals. That will get them paid for, but it will still be 120 days for the IEP process and then more time for the evals.

 

I really know nothing about residency. You have legal rights, federal rights, but it gets sticky when you're asking one state to do evals or provide services and then saying you're not a resident. You wouldn't even be a resident of your current location by the time your waiting list wait was up. 

 

Seems to me like you need to call multiple places, find the waits, and then have a pow-wow with your dh over the weekend to sort it out. Call a children's hospital, a private psych who lists working with autism, a university autism clinic, etc. The reason to go to a clinic is because you get all the evals at once, a multi-factored eval. Otherwise you end up piece mealing. It can be done, but with a 4 yo going to a clinic that specializes in autism would be the normal way to do it.

 

Treatment? If you enroll the dc in the ps, it becomes their problem. They'll eval and give him an IEP. If you want a BCBA (behaviorist, someone in your home), that's $100 an hour. You'll need coverage for that. Sometimes kids 3 and under will get them through EI, but you're past that. At 4 kids roll over to the ps for preschool services. So you could enroll him and let them take over and let the process happen. If you want services now, immediately, that's the way. 

[katilac]

Do you still have a house in another state? If not, you are living in the new state, no matter that it is with family. That may even be true even if you haven't sold the old house, but I'm not sure. Start making some phone calls. 

 

Call the school district and get him on a list for evaluations there. It's unfortunately very late in the school year, but at least get that ball rolling. I know some don't like going through the school system, but ours is pretty thorough, and you need some kind of starting point. 

 

Definitely you need to get the ball rolling on low-cost insurance and so on. 

 

It's hard to target interventions when you don't know the underlying cause. You can try to list triggers and avoid them. You can try suggestions in books like The Explosive Child. 

[Crimson Wife]

If he is working in the state and not planning to return to the previous one he's supposed to get a driver's license within so many days (10?) even if you are staying with family rather than renting/buying a place. We lived with my parents for a year when my DH was in grad school and I got a DL based on their address.

 

Once he has a DL, you can use that to get your child a state ID card. She will most likely need it when you apply for services to prove her identity. I can't remember specifically what we needed to get the state ID for as it was a few years ago. The thing I remember was the DMV clerk insisting DD print her own name even though she couldn't read and I had to dictate it letter by letter

 

 

Sent from my iPhone using Tapatalk

[mamashark]

 

 

I've got an evaluation scheduled - it should be covered by our health sharing plan. In the meantime I've had opportunity to meet with an OT and a behaviorist on an informal level.

 

The behaviorist is a friend of a friend and gave us quite a few methods to help his behavior including a picture schedule, sleep aid, and specifics on how to manage extreme fits. She was thrilled with how I can mirror talk and said that's a great method to help.

 

The OT was a personal friend, whe've used her services in the past, and I got a lot of info on how to put together an intense sensory diet. She also agreed with the advise I've gotten here about his inability to draw a person connecting to the sensory problems and feels strongly that the sensory diet can make a huge difference for him.

 

Essentially she said he cannot process sensory input properly so he acts out when ever the input reaches a certain level as his way of coping. She thinks as he is able to better process the input, we'll see both the behaviors diminish and his person drawing abilities increase.

 

I've also been lectured by my mil on how he's a normal 4 year old boy and that I'm causing the behaviors by coddling him and not spanking him. She wishes I would just listen to her instead of the people who tell me otherwise and wishes I wouldn't get him labeled.

 

I'm ignoring her and implementing the advise from the behaviorist and OT.

 

 

Sent from my iPhone using Tapatalk

[OneStepAtATime]

I had the same resistance in my own family to labels. Which is why my poor kids were not evaluated until waaaaaay later than yours, to their detriment. Evaluations aren't too acquire labels but to get answers and possible way to help tap into strengths as well as work on weaknesses. The label just helps us to navigate where to go and what to search for. Lots of people don't see it that way though.

[OneStepAtATime]

Oh and I'm glad you got some help. Hugs.