While we celebrate our sweet little boy, we still grieve the fact that we don’t know exactly what ails him, there is no recognizable name for what makes Josiah such a challenging and interesting child. We just completed an extensive testing/evaluation through the school district, and we are all still shaking our heads. It is validating that those who work with Josiah are just as baffled as we are, but it doesn’t make it any easier.
You know how everyone is unique? Well, Josiah brings a whole new meaning to the word UNIQUE. God broke the mold when He created Siah. Here are the latest developments.
When a student in special education turns 7, he can no longer receive service under the category DD, Developmental Delay, which Josiah has been identified as since he was 2 years old. So, leading up to his 7th birthday, the school re-evaluated him. After all the months of testing, Paul went to the evaluation summary meeting at Little Canada Elementary School. After 2 hours, the I.E.P. team (consisting of special education teacher, school psychologist, autism specialist, occupational therapist, social worker, and parent) decided that Josiah qualifies to receive his special education service under the umbrella of Autism. His official label was determined to be ASD, Autism Spectrum Disorder. OK, so that sounds like an answer, right? Not so fast. It isn’t a diagnosis of Autism, he simply meets state criteria to receive service within that category. The social worker referred us to a behavior specialist in Edina who can do many things for us, including diagnosing Autism, ADHD, and she can prescribe medication that may help curb some of his behavior. See…more questions, like, “Is medication right for Josiah?”
Josiah is still extremely impulsive, distracted, and controlling. It was hard to read the report of what happens at school. One of the areas of concern for the school is that Josiah hits, throws thing, screams, etc…1 to 10 times an hour!!!! He does this to get attention and/or to watch the adult reaction. It’s April… and it’s still happening. This speaks to the managing of his behavior that I’ve talked about before. It’s exhausting and frustrating just thinking about it. He doesn’t do that stuff at home, because we manage him 24/7.
From this meeting, we’ve been able to identify an issue we’ve known about Josiah but hadn’t been able to articulate before. Josiah has a high need for sensory input, and yet he has a low threshold for such input and can become over stimulated easily. Did that hit you like it did us? This speaks to so much of his core issue. How do you support a child like this? Answer: You don’t, you manage him…just to survive. This causes exhaustion, which leads to frustration, which leads to more exhaustion, which leads to resentment and the defeating cycle continues. Welcome to life at 953 Edgewater Avenue.
It seems as though there aren’t any victories to fuel us. Sure we have small steps, but the pace at which he is developing is overwhelmingly slow. He’s getting further and further behind his peers, and it breaks our hearts that he really doesn’t have a true friend, since social interaction is one of the many areas that he struggles with severely.
We had his birthday yesterday and it went OK. What parent doesn’t want to give their child a birthday party? Well…you might not have wanted to ask us yesterday, if we are being honest. We are still going to do it for him each year, but it was quite chaotic, and this is just immediate family and family friends. Josiah really doesn’t connect with anyone when there are so many people around—people I should add—who care deeply for him. The more people there are, the more he avoids social interaction.
Picture our big back yard, FENCED, with a trampoline, swing set, kids and adults playing and visiting. Then picture Josiah walking my cousin’s dog around on a leash, around the perimeter of the yard. The more people around the less social interaction he is willing to participate in. This is sad to me. The frustration and management also played a part of the party. Josiah melted down with the first 15 minutes of people arriving because Paul told him NO three times when he starting emptying the toy chest outside on the deck, just for the sake of emptying it. His melt down was so great that I had to carry him into my room for a time out because he refused to move by himself, and went limp to the floor.
I sat on the couch last night after it was done and told Paul I just can’t do birthdays like this anymore. Luckily we have time to to recover--NO wait, Mia's birthday is in June. Ahhh... I need a new plan. :)
We thank the Lord for Josiah, even without answers. We thank our special education team at Little Canada (they should all get raises). Anyone in this field needs to be acknowledged for there commitment to these kids and parents. What a blessings to send him off to school knowing that he is loved and supported by people that he regularly kicks and runs away from. :) (Insert head shaking). We pray for answers, so that we can provide him with everything he needs to develop.
