May 21, 2010

The underlying theme of our last blog was, “We want answers!”

On Thursday, May 20^th, we got an answer in the form of a formal medical diagnosis for our sweet Josiah.

Autism.

Oh the power that just one word can yield. As with most things, this answer produced more questions. Paul asked Jane Marie, the clinician evaluating Josiah, what this would mean for Josiah’s future. She confirmed one of our deepest fears; something we both had thought about, but didn’t want to hear…that since there isn’t a cure for Autism, chances are that Josiah would not live a typical life. Her words were gentle and sensitive, yet blunt and strong. She said, “Josiah’s future will probably not be what you both have hoped for…he is a complicated little guy because along with being Autistic, his cognitive functioning is quite low. He probably won’t go to college, or get married…he likely will be happy living in a group home with similar peers and may enjoy working regularly at a simple, repetitive type job. I am sorry to tell you this.”

While we knew it in our hearts all along, through years of worry, wonder, and uncertainty, it is still hard to have an expert in the field confirm that one of your children will not lead a normal adult life. Although he will physically grow into adulthood, he may never reach a cognitive level where he can be independent.

If you know me, you know that I don’t do well with the unknown. I have a need to know and to have as much control of my world as possible. So on one hand, this news is positive because now I can deal with this reality and plan my life around concrete answers, verses the last five years when we have lived wondering why he isn’t learning and growing with his peers. On the other hand, it is devastating news that is quite hard to swallow. Paul and I are realizing that we really haven’t ever allowed ourselves to grieve any of this, until last Thursday, when the floodgates opened.

For five years we have traveled on a journey with NO road maps, NO compass, and NO knowledge of our destination. Now that we have a diagnosis, we have a map, but it is quite complicated to read. The journey ahead is full of road construction, detours, and possible dead ends. Upon hearing the diagnosis, we were faced with our first detour…medication.

Josiah started medication the very next day. Jane Marie wants to start slowly and try a combination of two different medications, one to address anxiety, and the other to address impulsivity and inattentiveness. This is an art, not a science, but if his focus and attention to tasks could be improved, then the strides that he could make academically and socially are quite promising. We are anxious about the idea of medicating our seven-year old, especially when you read the side effects, but as his parents, the ones who chose to adopt him, we are charged with doing whatever we can to help him. It is like we are in a maze, and we owe it to him to exhaust all possible routes to lead him out of this confusing mess.

While we are crushed and saddened, we are grateful for honest, straightforward answers, a map, and amazing, generous friends.

Our sweet friends, the Krohns, gave us a gift certificate to a hotel AND stayed at the house with the kids last weekend. What a gift! At first, it was difficult to think of accepting such a generous gift. But in doing so, we were able to experience the love of friends, and we were blessed by their willingness to come along side us in this journey.

There are many others who have surrounded us with encouragement, prayers, and a listening ear. The best gift to us is that people have stay with us through all this. It’s not easy to be friends with a family whose kiddo has special needs. We tend to isolate ourselves because it’s easier to stay in our safe, predictable environment than to risk the consequences of what will happen if we put Josiah into social situations in which we know he struggles. The stress that it causes our family doesn’t seem worth it.

God has truly blessed us with people who have stood by us or in some cases, have even pursued us. The fact is, we aren’t very good at asking for help. It doesn’t come naturally for either one of us, as we both like to be fixers, peacemakers, and self-sufficient. When others need our help, we are happy to help, and yet the thought of asking for help from others seems like we’re inconveniencing them, or that we will need to “pay back” one good deed with another. We convince ourselves to just handle it on our own.

Did I mention that I think Josiah isn’t the only one with special needs? J

Just like Josiah falls somewhere on the Autism Spectrum, Paul and I find ourselves bouncing from one end of the emotional spectrum to the other. We are grateful, and we are crushed. We have struggled for the past few days to look to God. We are angry, but beneath the anger is pure sadness.

I am thankful for Amy Grant’s song, “Better than a Hallelujah”. It is a reminder that God wants us to come to Him no matter what we are feeling, because if the only way to approach God is with a Hallelujah—then our relationship with him is limited to just times of joy.

Here are the words. I added the link to the video. Very Sweet.

God loves a lullaby

In a mother’s tears in the dead of night

Better than a Hallelujah sometimes.

God loves the drunkard;s cry,

The soldier’s plea not to let him die

Better than a Hallelujah sometimes.

We pour out our miseries

God just hears a melody

Beautiful the mess we are

The honest cries of breaking hearts

Are better than a Hallelujah.

The woman holding on for life,

The dying man giving up the fight

Are better than a Hallelujah sometimes

The tears of shame for what's been done,

The silence when the words won't come

Are better than a Hallelujah sometimes.

Better than a church bell ringing,

Better than a choir singing out, singing out.

http://www.youtube.com/watch?v=lD_pCr_Xrnc&feature=related

Josiah Turns 7!

Today is Josiah’s 7^th birthday. When I thought about this day four years ago I thought we would have so many more answers to our questions about our little man, but instead, it feels like we have even more questions.

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 7^th 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.