ABA · anxiety · asd · aspergers · autism · emotional disability · family · HFA · insurance · PRTF · RTC · special needs

Embracing the Crazy – An Update

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Living with a child with special needs is living with confusion. Parents make decisions based on what seems to be in the child’s best interest, but then the best interest changes the next day. Parents make decisions based on the here and now with hopes of it making a difference in the future as well. As parents, we do not make any decision lightly. We weigh all of the information, past, present, and potential future, but we have to look at what will help the most at the time. Sometimes that works in our favor, sometimes it does not. 
We made the decision to place D in a residential treatment facility. We felt that was the best decision for him at the time, but unfortunately due to insurance holding all of the earthly power he was discharged before he was truly ready to come home. We still feel that this was the best decision at the time, but now we are trying to compensate for the time he should still be there. 
Our family, from the inside, still looks much like it did at the beginning of this year. We are still dealing with explosive tantrums, debilitating anxiety, and controlling personality from D. We are seeing the return of many PTSD symptoms from the girls, and honestly from Chad and me. 
Our family, from the outside, still looks much like it did at the beginning of this year. We appear to be parents who have no control over one child, who allow the child to control the situations. We appear to be struggling, unreliable, and at times inconsistent with expectations and consequences. 
I think it is fair to say that we are all of those things. We are dealing with the same types of behaviors, the same symptoms, and we are still struggling as a family and as parents. We have also grown, though. D has learned to identify his feelings and his coping skills. Spike has learned to determine when D is angry or frustrated with her or with something out of her control. She has also learned to tell him, “No, I don’t want to play with you.” Pouty has learned to run for the hills when D gets anxious or agitated. As parents, we are learning to recognize that it is ok for us to take turns so one parent can take the littles somewhere while the other parent stays home with D. We are learning to accept the fact that he cannot participate in some family activities, so we try to do things with the other kids while he is at school. 
We are having a difficult time getting the services necessary lined up, but we are working on that diligently. We have found a therapist who understands HFA, a psychiatrist who specializes in working with children across the Autism Spectrum (especially those who are higher functioning), his therapist from the RTC calls him once a week (she is truly an amazing gift to our family). He was evaluated by an occupational therapist this week and should begin receiving OT soon. We are working towards getting him set up with a personal care assistant who will be able to come in almost daily to help with homework, chores, and processing his day. We are also working towards getting him involved with some ABA. Things are, hopefully, falling into place for him. 
In addition to all of those things, we are working with the school system. His evaluation has been completed and we are waiting for the invitation to conference for his eligibility meeting. This is where things will get even more hairy than usual. The school is trying to override the medical diagnosis of Autism Spectrum Disorder by three psychiatrists. They have determined that he does not meet the educational diagnosis criteria of ASD based on language and communication (he can compensate well for short periods of time). The district sent two psychologists, who spent two hours with D, to conduct an autism screening tool. That tool does not override the medical diagnosis of ASD. 
Saying a child with a medical diagnosis of Autism is not autistic because the school 
system says he is fine in class like saying a child is not diabetic because 
his glucose level was in the normal range when he got to school.
Due to their insistence that D is emotionally disabled due to his anxiety, rather than anxious due to his HFA, we are in the process of creating our own information and data to either help them in their decision making process or take the situation to the next level. 
Overall, as a whole, we are continuing to truck along. We are dealing with a lot of the same things, but for once I see hope in his treatment plan. I see a group of people who are working with us to help D. Outside of the RTC, for the first time, I see a group of people who truly understand D. 
Our family would not have survived the last 6 months if we had not made the decision to place D in his RTC. While insurance sent him home prior to the recommended discharge date, we are grateful to the help of our case manager there. She has been instrumental in getting the professionals lined up to help D and our family. 
Men may spurn our appeals, reject our message, oppose our arguments, despise our persons, but they are helpless against our prayers. ~Sidlow Baxter~
As always, we will continue to pray for everyone involved in D’s treatment and education. While they hold earthly power, they hold no power greater than the power of God. 

One thought on “Embracing the Crazy – An Update

  1. you're doing GREAT!! Things sound so optimistic for D at the moment. Sounds like he's got a strong team behind him to make sure he gets what he needs. Awesome stuff!

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