Sunday, April 5, 2015

compromise or accomodate

"Please get your shirt on H I need your help please!". "Honey find his socks help him please we are late again." It's another Sunday and another Sunday we are late for Church. We already missed the sunrise service but I didn't hold high hopes for even making that one. I race from one side of the house to the other. "Ella find a shirt, brush your teeth, feed your animals; HURRY we are running late." She looks at me as if I am crazy. I am I am running around on Easter Sunday morning barking orders instead of just letting everyone relax with their goodies and have fun. "Nevermind Ella I will do your hair just please baby hurry!!"
After a small sprint before the marathon I call Church. We load up in the car, holy cow its 10:10 we NEVER leave the house that early. Wait hold on I tell myself we aren't late thank God! We can get a good seat I can have time to settle H and maybe I can listen to the sermon today. Maybe. In the back I can hear H saying he doesn't want to go and that he just wants to go home. This could seriously go either way at this point. Who knew the one Sunday we are actually early the church is already full with close to 100 people.
I let out a heavy sigh. We are greeted by our friends Scott and Stephanie and told we could sit in front of them. A sweet older man sat at the end and said he would move if we needed his seat. I told him it wasn't necessary as H generally sat on my lap or the floor. Or in this case today he opted for the nursery. "Loud mommy, it's loud!" "Mommy I need to leave mommy its loud and lots of people," I looked at the gentleman apologized and excused myself and H. The church is never this full, however it's Easter and we had a guest speaker. I felt obligated to go since we had missed last week and I missed ladies group Wednesday due to illness.
"Lets go in mommy, I want to play with cars." We walk in I settle in to the rocking chair. The room is empty. Service hasn't started yet so I stand up and go to the door just to watch everyone else. Talking and mingling. We know two families maybe three at this church, well I do Chris knows everyone. I am trying to fit in and mingle but with H it's almost impossible. I must have lost track of what I was doing because when I looked back up the service had started. H was laying on his belly rolling his cars back and forth. His new obsession from his Easter basket. He is content and seemingly relaxed. I retreat back to the rocking chair. I ask a few times if we can go sit with daddy. 10th try is the charm. We quietly, well as quietly as we can for us walk back into the church. We lasted 2 minutes the music played and he was done. We make our escape again to the nursery.
Just once, just once I want to hear what is being said. The nursery has speakers but to me its not the same as actually sitting amongst the congregation sharing this time with the other families  It's not the church's fault its a small congregation and the pastors wife works with special education. She gets it just as much as I do.  I hear the pastor ask for the children to come up to front. This is a crap shoot for H normally. "H sissy is up front do you want to sit with her?" "Momma I go see Ella and sit mommy." Round 2. This time he makes his announcement as he walks in as he looks for Ella rather loudly. "It's a good thing he" is cute I mutter as I stand at the back doors of the church. He sat with Ella. I was so relieved. When it was said and done he wanted to retreat back to the nursery. Of course he did.
We had the room to ourselves and then slowly others came in. It was a longer service. Two parents with infants came in they fed their child and then walked around. Four children around his age walked in. One begins to take his toys, pester him and causes him to become upset. I ask the child to stop no luck. Go figure. "Now what?" I say to myself. Back with congregation we go. The guest speaker is still talking and H is laying on the floor. I heard part of it but I was so focused on H I missed most of it. I am growing resentful and irritated. Why do I even bother showing up each week? I have yet to sit through a sermon.
We get up for our final time. I let H just play in the entryway. This time I hear almost nothing of what is going on and just watch. It's not the church's fault. They aren't supposed to cater to our needs. I like this church. Do bigger church's have better accommodations? They are huge there and I hate getting lost in a crowd and just being a person. Do I sacrifice the possible ability of accommodations for the convenience? Do I put off church so that I take the stress of of us?
I am at a crossroads. I want us to be involved in a church and support my husband who is suddenly able to feel comfortable and socialize amongst others. I just hate putting H through this and myself. Ella and Chris seem unaffected which is good. I want this for them. I realize that not everywhere we go will have accommodations and be able to meet our needs. I don't feel like we are entitled to or deserve some sort of special treatment. I try to seek out places though that I know are a good match for us. I know that H has to start getting used to more of the real world. Kindergarten will be one of his biggest exposures and real world submersions. I know soon he will realize he is different and I don't want it to be a huge issue for him. I want him to know that there is a place for him in this world and that it's not always going to be easy and it's not always going to be able to cater to his needs.
I've analyzed this whole situation today and I know that while it would be easier to find a bigger congregation that probably has a way to meet our needs, it won't meet all of ours. I am ok with his needs not fully being met for once. I know that maybe one day he could get comfortable with this and until then we will just chill out in the nursery.

Saturday, March 7, 2015

No holding back

It's been a while, longer than I like going, but I am back. Our lives had many great and wonderful changes so far in 2015. We moved and now have a much bigger home with more space for all the children and a wonderful space for H to do his therapy and work. It's been amazing. The family seems much happier and relaxed it is exactly what we needed. I started a new job. I left my job teaching preschool and decided I needed something different, something that would make me feel that I was making an impact. I decided to take a leap and be a special education aide for high school students. Its been eye opening. I am no longer living under my sheltered special needs rock, I am fully exposed to the real life, real world things that are going on once children leave the comfy confines of the pre k/ elementary setting. It has changed my thinking and outlook on things.
In January I had the privilege of attending the Parent Organization Academy and since then I find myself really going back to that information  to help me. I never thought about the older kids with special needs as I was going to these things, I wanted to focus on the here and now not what would lay ahead for us. I regret that I wish I had. Not just for my own knowledge for my child but because I need to be a better resource to others around me. Thankfully I kept those resources and did listen to some great things so I am calling it to memory now.
Last year when I went to a conference I again didn't get too involved with the discussion about state supported living facilities, nursing homes and things of that nature. I always have had my thoughts and opinions on them and never really wanted to have to utilize them for myself or husband if we ever came to needing help. I never took into consideration that families utilize these facilities for their children. I know everyone has their reason but I do recall in that meeting last year hearing how they wanted to have families be better equipped and trained to care for their children and young adults in their home, if not help find affordable ways to make it happen.
Spending the last four weeks with my new job I have learned to really appreciate and not take for granted what I have. Most of the children in our special education program do not live it home or have a shared custody with the state school, or supported living facilities. Its tragic. Its so upsetting knowing these families felt so hopeless and overwhelmed that they couldn't care for or meet the needs of their child. To know our community missed the opportunity to help these families seize what they would need to help keep them with their parents hurts but not as much as hearing that some parents just didn't want the help and didn't think they were capable and they turn them over to the state.
Each of these children who have the capabilities over the past month have shared their goals, their hopes and dreams with me. I have a child forever wheelchair bound, no chance to do anything on his own, want to be a greeter at walmart. Another wants to work at Sonic. One hopes to be a singer or artist. There is one who has such big dreams in making it big in music. The point, they are all children and just like any other child they want to be something, someone when they are done with high school. They have dreams and ambitions just like we do, except while parents and family were encouraging ours, their parents, caretakers whomever it might be squelch theirs and deviate them to something else. They are held back even more now. Its bad enough they spend their time away from school feeling out of place now here they are being told even when want to be an adult no one will support you and most will discourage you and make you feel that you aren't capable of having a future. It has to stop.
None of my children will be held back. They want it, its theirs. You want to fight for it, then go for it. While I might know deep down some of their dreams and goals might not happen I want them to still learn these things on their own. It might be a learning experience for me in the end when I see them make that impossible goal that I think is out of their reach. I will sit more intently and listen to what is said. Their words are important and should be valued. They may have a disability but they still have many abilities and that should only make them and their dreams different not less than anyone elses.

Saturday, January 3, 2015

A Whole New World

Yesterday H had his ABA assessment with Taylor. I have, we have been waiting for this day for two years. Not all therapies are covered by insurance unfortunately, especially some of the more successful ones ironically. Our hold up was the lack of money to cover this therapy as it can run at least 100.00 an hour. However now that they have what is called a Tech it costs us about half that so we just have to get through the initial consult and then we are golden when it comes to the his weekly sessions. Yesterday was a 2 hour meeting where they tested him in various areas to see strength and weakness. We got a lot of input in that short time and after hearing what she had to say I started to feel this weight slowly move off my shoulders and chest. The fog was starting to lift and things I didn't I would be able to see were starting to appear.

When Taylor was telling me about social aspects and escape tactic I was relieved to hear she had a plan for that. Between home and school H has found many ways to avoid tasks that he does not prefer. Some have gotten to the point where it becomes a huge knock down meltdowns. He struggles of course with social situations where its not what he wants, when he wants and how he wants it. Yes this could also be typical 4 yr old behavior but also at this age they start to learn and make progress we seem to either stay at a standstill and or regress in these places.

When we got in the car I really started thinking about how things are about to change, how they are going to impact not only H but our entire family.  He is about to learn so much more now. We are going to learn so much more.

Its crazy to think this has been almost 2.5 years in the making. Its pretty overwhelming and emotional actually. You think about all your child's struggles and deficits, and how it can hold them back, you want to help them but these things are just beyond your power and control. You, as a parent feel inferior. However you meet these amazing therapists and they take on a missing role in your family. They help bridge this gap to make you even stronger and cohesive. They are your missing link.

Fast forward to today January 3 and we had our two hour home visit:
It was productive and rewarding. Taylor came to the house and saw our family in action. She spent a small amount of time playing with H to see how his play skills were. They are good minus the social interaction and having his toys messed with. She also saw how his interactions with his siblings are also. That was very hit and miss. He has some demanding and needy behaviors. Some are pure behavioral while others are sensory seeking and just where he lacks.

The highlight was when she had the kids come to the table and ask them what they see. Perfect! They will be getting sibling training. The kids are excited to know this is their time to shine and be apart of helping their brother learn and grow.  Once a month there will be a home visit, so in preparation for it the children will document what they have seen improve and what they see still needs help and new things that need to be addressed. This way we can see overall where he is progressing.

Each week he will go three times for an hour and a half. Some will be at the rehab facility some will be in the home. All of this over time will help him at home, in school and other social situations. The other bonus is Taylor will be apart of our ARD meetings now. I think we have a pretty stellar team. A team, that is what it takes. Some say it takes a village to raise a child. It takes a village, a team to help raise the special needs children. Our team is about to go and take on on the world!