Sunday, July 26, 2015

A Place to Belong

Finding a place to belong is one of the most important parts of this human journey, and probably one of the most devastating parts of our journey with Autism. 

From the time Andrew was very young, he didn't fit in anywhere. Not only with his typical peers, but his spectrum peers as well. He always seemed to be the one with the most struggles. Unable to adjust to any type of structured or unstructured program. Unable to handle things that others took for granted, like playing at the park, or attending birthday parties. He never seemed to be bothered by this, but Bryan and I felt our hearts break a little each time we experienced it. We felt the pain for him. 

Andrew is almost 11 years old, and this inability to fit in anywhere has not changed. He is growing up, but in many ways he is still a toddler in his mind. The older he gets, the wider the gap between him and his peers. And the less he fits in. 

When he was younger, there were more opportunities for him to be included with others. But as he gets closer to junior high age, the inclusion falls away, and he is left more alone than ever before. 

This became more true than ever today when we met with the special needs director at the new church we started attending a couple of months ago. We loved our old church, and they are one of the few out there that have a true special needs program for all. But our youngest son needed more peers to interact with than what our church could provide, so for his sake we looked elsewhere. This new church has a great pastoral staff, and great children's program for James. They have so many activities going all the time, and their budget is in the millions. 

They also advertise that they have a special needs program. But we found out very quickly that their special needs program doesn't meet the needs of any child that is not able to mainstream into a normal classroom. It doesn't provide care for children that have physical or mental disabilities.....mostly it seems they cater to kids with attention issues. They provide a buddy to be with them, but require them to be in a classroom of their peers. The director stated that she knew that this was a need, but that no parent had come forward before with a child that has needs as severe as Andrew. 

She asked no questions about him or his needs. She showed no interest in him at all. And when I tried to explain what kind of a child he was and what his limitations were, she interrupted me with excuses as to why they haven't started a program to serve families with loved ones like him. She went so far as to say that they never want to turn a family away, but that there are many churches in our area that already have programs in place to serve a child like ours. Which for the record is completely untrue.

It was a huge disappointment to say the least. 

I don't blame the director herself, but this is a huge church. A church that has missionaries all over the world and a church that makes it a point to help those less fortunate. But what of the people that live right in their neighborhood....in an area with the largest ratio of autistic children in California? These families need the ability to have a chance to be fed and grow in their faith with other believers. And that chance is rare when you have to take turns with your spouse attending church because your child is not able to be cared for in that environment.  Even more rare if you are a single parent. They have respite days for a date night, and meetings once a month for families to get together and talk about their kids with special needs, which is all awesome.....but that is the extent of what they provide. We need to be able to attend church and grow in our faith in the Lord....all the while knowing that our child is safely cared for just like the other kids.

We left church with an ache in our hearts. A sadness that only comes from feeling left out. Again.  That ache quickly turned to anger. Churches should make it a priority to serve the needs of families struggling with the care giving of a child or adult with disabilities so that they can enjoy a church service. It takes time, training, and resources, but so does having programs for typical children. 

I just wanted to be angry. To stop going there all together and find a place where our family could have our needs met. But those places are few and far between, and I have to think of other families our there now and in the future that need a church they can call home. 

So instead I offered to help them build a program to serve a broad range of kids with disabilities. I don't know what will come of it, but she seemed willing, and open, and wanting to meet the needs of other families out there that are just waiting for an opportunity like this. 

So instead of being angry that my kid has been left out of something, I will make an effort to change his circumstances. 

Anger gets you nowhere. But it can give you that boost of strength you need to make a difference. 

Here we go.

Tuesday, July 7, 2015

Grace

Last night was rough. 

Ok, I'll be honest, the last couple of months have been rough.

Drew has been really struggling ever since I had to go back into the work force, which is something that could not be foreseen or stopped. Life happens. Bryan sustained an injury so serious that he is unable to work for an unknown amount of time.

Drew has always had me around. From the moment his eyes opened in the morning to the moment they closed at night, I have always been the constant in his life. With all of the changes of therapists, schools, schedules, etc....he always knew that Mama would be there to help him ride the waves of uncertainty.

All of that changed on December 10th 2014. The day that I started working full time after 10+ years being a stay at home mom. 

Even though Dada has now taken on the stay at home parent role and is doing an excellent job (better than me as far as I am concerned), he is not me. And to Drew, this makes life very hard. He is sad. He is angry. He is insecure. 

I feel awful. 

I can't be there when he is having a hard day. I can't be there to stop him from hitting himself when he is upset. I can't be there to wipe his tears of sadness and frustration when he cannot say the words in his mind he so desperately wants to share.

I feel helpless at work when I know that he is struggling and I have to continue to do the things that need to get done here. I have to trust that he will be okay. That Bryan can handle it. I know he can. But the mommy part of me hurts that I can't comfort my child. I worry that he feels abandoned by me. He doesn't understand why things had to change. I hope someday he will be able to.

Last night.....really the last few months of nights off and on, Drew struggled to go to sleep. He is fighting sleep. Literally. He cries, and cries, and yells repeating whatever consoling words I say to him, and cries some more. He pees his bed as soon as I leave the room and his bedding has to be changed multiple times a night. We have tried everything we can think of the last couple of years to fix this behavior but nothing has helped. The other night he cried for 2 hours straight until he fell asleep due to pure exhaustion. I read to him, sang him songs, held him, wiped his tears, and told him "mama is here, mama's got you" over and over...but nothing consoles him. We have talked to doctors, done testing of all kinds, adjusted his sleep supplements, tried new things, tried old things, and nothing works.

Some nights I respond to this the way I should. With patience, love, consoling words, and more patience. Other nights when I am exhausted from my own busy day I respond to him with irritation, anger, frustration, and impatience. And then the guilt follows. I hate myself for not being able to control my reactions. I know in my mind that Drew can't help the way that he is. He is going through something and he is not wanting to have the problems he is having. He doesn't like not being able to sleep, or to cry so hard that he struggles to breathe. I know this. But sometimes I am weak. More often than I would like. 

After a long struggle to get him to sleep last night, I came out of the room and sat down with my phone. A message came to me over Facebook from an online friend that follows my blog and my boys. It took my breath away and brought tears to my eyes.

 It started with a question. "What do you do when things get really bad?"

She went on to describe difficulties with her daughter and the hardships she and her daughter face on a daily basis. She asked me how I cope, and stated her fear that she is not a strong enough mom for her daughter.

I wanted to have a brilliant answer for her. Something to encourage her about how I cope with things and something that will give her strength to get through another moment. 

But I didn't. My response was this.

"I am not strong enough. I wish I was. I try to be."

"Only God's grace sustains me. I feel guilty. I should have more patience. More strength. More endurance. I am so sorry. You are not alone. I wish I had good advice.....but I am in a broken state as well."

"I do the best I can and I feel it is never enough."

Sometimes it just has to be enough to know that you aren't alone in your struggles. That there are others out there that understand what you are going through and will support you just by listening and sharing in your struggles. 

Life is hard. It will probably always be. I just have to push on and continue battling with myself to be better for my son every single day. 

I'm gonna screw it up. 

A lot. 

But I will choose to keep trying and give myself grace along the way. 

And I hope you do the same.