Friday, October 23, 2009

Connecting The Puzzles With Love

Kyle and Sarah Broady like so many of America's couples fell in love in their college years, and a couple of years later were married. They were off reaching for their dreams and walking hand in hand on the path that the Lord had laid out for them. Kyle Broady is the worship and family pastor at a Baptist Church. Sarah is a homemaker, home school teacher, and entrepreneur of Totes'N-Stuff. Kyle and Sarah are also the proud parents of three darling little boys Benjamin, Samuel, and Joshua. Today Sarah has been kind enough to let us on the inside of her family's life in order to share the blessings and the struggles of day to day life with their son Samuel. Samuel the beautiful young life made in the very imagine of our own God and entrusted to Kyle and Sarah as their son. Samuel was 27 months old when he was diagnosed with autism. Sarah describes that moment as confirmation of what she already knew in her heart and has said many of the emotions came later. Even still, the family faces a deeper emotional process. Sarah calls it the grieving over the loss of what she had once hoped for her son. Now the family is learning a new way to live that is not based on expectations. This is Samuel's story told from the very full heart of his mother Mrs. Sarah Broady. This story is beautiful, frustrating, inspiring, spiritual, and unfinished....

Sarah's Story, and Heart shared:

Autism is a pervasive developmental disorder that affects three domains of functionality. Social, communication and repetitive behaviors are the three domains. When all three of domains are affected to the point where it prohibits the child or person from functioning within a "normal" range, a trained doctor may diagnosis that person with autism. There is no definitive cause for autism, though there are many possibilities. Genetics are certainly a factor, especially if close family members have similar disorders that would give the child a predisposition to inheriting a developmental disorder, as are environmental circumstances, chemicals (i.e. mercury in vaccines), and other disorders such as Fragile X syndrome has been proven to cause autism as well.
The story of how we came to begin this journey of living with autism: Sam was different from birth. He not only had a different cry from his older brother (19 months difference), he had a totally different disposition. That was not atypical of second-born children. However, Sam had a variety of issues that greatly varied from his brother that began to cause concern. Although he reached most of his normal developmental milestones on time - rolling over, sitting up, and crawling, his language development was delayed, and he barely began walking "on time", at an old 15 months. His only form of communication was screaming and crying. Not just an annoying scream. This was a blood-curdling ear-piercing scream that I can only describe as a cross between a screech owl and a velociraptor from Jurassic Park. We had to play "100 questions" to figure out why he was screaming. He had always screamed like that, but at age 18 months, it was concerning. His behavior was volatile as well. When he threw a fit, he didn't just throw himself on the floor and cry until he got over it. He would bang his head repeatedly on our hard wood floors, or run to our thick wooden door, or use the ceramic kitchen tile floor for his head-banging session.
The pediatrician sent him for a hearing and language screening at 18 months. His hearing checked out fine, so that wasn't the issue. His language however, was at a 50% delay. This means that for a child who should have been on an 18 month old level, his language was actually on a 9 month old's level. No 9 month old says, "Mommy, I want juice." No wonder he couldn't tell us what he wanted! We began going through the state's First Steps program that provides in-home therapies and we started both speech and ABA (applied behavior analysis) therapy simultaneously right at age 2 in August of 2007. ABA has been a proven therapy for children with autism and other developmental disorders. I had a good friend who was an ABA therapist and she had helped me in a crisis situation with Sam one time and strongly encouraged me to begin therapy for his behavior right away.
He began to progress very well in therapy, but it was still a very difficult time. As time went on, my husband and I just felt like something was "off". He didn't seem to fit into our family. He imitated everything, and that was his play. While Daddy had wrestle time with the boys, Sam would just do whatever Ben did - it didn't seem to be he understood what he was doing; he simply imitated actions. He was obviously very smart, as he knew all of his alphabet, numbers 1-20, colors and shapes by age 2. I discovered that within the two days his big brother had started playing a Blue's Clues CD-ROM that showed letters, he had absorbed all the information! I could point to any random capital letter, and he knew what it was.
For our own ease of mind, and to "rule it out", we took Sam for testing in December '07 (four months after beginning therapy. He was 27 months old). After a two-hour testing session, including a full-blown questionnaire for me to answer as well, we received the official diagnosis of autism.
Our faith is the single most important aspect of living life - no matter what struggles we have in this life. If we have no faith, we have no hope. Without faith, I would be forced to view my child as someone who drew the short straw in life, always feeling sorry for him. Without faith, I would have no comfort that there is a plan for his life, designed by God Himself. Without faith, I would not understand that my child was created exactly the way that he is by the God of the universe, knit together in my womb, known by God before he was born.
Samuel was created for God's glory. That sounds so very strange, doesn't it? Why would God make a child with disabilities? The truth is, we are all created "disabled" because of sin. God made each and every person in His own image, and yet, we are born into sin. Disability is simply an outward manifestation of the sin that is in each of us. The fall (in the garden of Eden when sin entered the world) affects every single person, without partiality. Jesus Christ is the only one who can save a person from the consequence of their sin - death and eternal separation from God in hell. What does this have to do with autism? Well, honestly, struggling as a Christian mother to live a godly life, I am reminded daily of my own need for a Savior. It happens that Sam's autism brings that out the most in my life. I'm not always as compassionate as others would think a mother would be toward their child. I get angry at his outlandish behavior. I get frustrated because my own plans get interrupted far too often. I am inconvenienced by every yell, every cry, every request for help, every extra minute that is required of me that I don't feel like giving. All of that is nothing but sin. I am selfish, desiring only to sit on the couch and update my Facebook status, or read a book, or take a nap, because I am preferring myself over my children. It is not wrong to desire any of those things - but I am made extra-aware of them because they usually come at the cost of making my kids wait for me to feel like getting up to help them, or intervene in another argument, etc. For all of that, I need a Savior. I need Jesus to give me strength to do what I need to do, what He has given me to do as a mother. The fact that my son has this disability shows me that much more that he too, needs a Savior. He has no hope of living a life glorifying to God apart from believing in Jesus. His autism brings out his sinful nature in a very profound way. My son needs Jesus just as much as I do.
I need the hope that none of this is in vain. That God is using every moment to grow me, to show me my utter dependence on Him alone because I cannot do this on my own strength. In my own strength, I would have given up long ago and followed through on that fleeting thought that I can't do this, that I'm a horrible mother, and that maybe I should just leave. But God had grace on me. He gives the grace every day to handle whatever comes my way - from autism or otherwise. Here in the power of Christ I stand!
Sam has taught me very simply, compassion. When Sam was first diagnosed, I wasn't angry, as I read about many parents who feel that in the beginning. I had already been angry with him because I didn't understand why he was acting the way he did. I didn't understand what was making him different, why I couldn't connect with my child the way I was supposed to. Sam's autism diagnosis brought this incredible flood of compassion I never knew before. Maybe it was because in my mind, he was now justified for behaving as he was. There was a legitimate reason why he hurt himself so badly banging his head and screaming at the top of his lungs. I was able to finally show compassion toward him when I understood that reason. It changed our relationship. Now, he has grown to the point where I can tell when his autism is what's causing his frustrations or when his depraved little 4 year old self is acting out because he just wants what he wants when he wants it. He is disciplined in the appropriate ways for both scenarios. Although it's still very frustrating when he acts out, and Kyle and I get mad when all we wanted to do was have a nice family day out and Sam's screaming ruins the whole day, we are still able to understand that this is life with autism, and we have to go into "coping mode" at that point. We can still have compassion on him even in the midst of all that frustration, and handle it in a way that is hopefully pleasing to God.

A peek in to some of our everyday moments. First of all, the importance of spending individual time with each of our boys is crucial. I am able to spend a good amount of quality time with Ben and Josh (5 1/2 and a new 2) every day while Sam is at school. I home school Ben, so we spend lots of time together. Sometimes while Sam is at school, Josh will occasionally take a morning nap, and then Ben and I have our own time without distractions. He also doesn't take a regular afternoon nap, so we have time together while his brothers sleep. Sam is harder, simply because I can't leave the other two alone and take just Sam. We live in a very small cramped trailer (temporary until we sell our house), so there's no where to go really to be alone. We're always all in the same space. Kyle and I will use time to run errands and take just one of the older boys with us. Kyle likes to take Sam to the bus stop - it's about 10 minutes they have just the two of them first thing in the morning. At bedtime, Kyle always leads family devotions. They each sit and listen to the story, they get to each choose a song to sing, we play a bedtime game, and they each get their own special hugs and kisses. As an associate pastor, Kyle gets one day off during the week, so that's always family day. When Sam's in school, Kyle gets special time with them apart from Sam, then they get Daddy play time - boys only - later in the day. It's a difficult balance, and we are always trying to be aware of it and improve our time with them. Sam has not seemed to need a specified routine - always doing the same things in the same order every day. He does well in a structured setting where he knows what to expect in any given activity. I make great use of our oven timer. I can change anything in our day, as long as I give him information on what to expect, and a timer that dictates our schedule. For instance, when he comes home from school, he always has play time while I make lunch. I can't just say, "Lunch is ready! Come on!" and he comes running. But if I set the timer and tell him "Sam, when the timer goes off, it's time for lunch." He says "Okay", and when it goes off, he comes running. Same thing with bed. Sometimes, a bit frazzled, I just start calling for the kids to head to bed. But it throws him off because he was playing with his toys and wasn't prepared for bedtime. So I tell him again that it's bedtime when the timer goes off, and I'll set it for 1 minute. He doesn't care how long or how short the time is - he does what I told him to do when it goes off. I use this method for just about anything during our day - eating, bath time, bedtime, nap time, play time with certain toys, etc. He requests the timer now. It's a safety for him because he can trust it. The other children usually respond like this when Samuel is having difficulty expressing himself. Usually, it's an escalating event. Sam will try to take a toy from Ben, and Ben will calmly tell him that it's his toy and Sam has his own toy (as is our policy, because Sam will attempt to take his brothers toys away, no matter what they are). Sam will yell and start to whine, and Ben's voice raises as he insists Sam not take his toy. Josh, looking on, will start to whine and cry. If I don't intervene, or don't get there in time, it's a full-out yelling and crying war for all three boys. Sam will just begin to whine, cry and/or yell at anything he doesn't like, including if his brothers are upset about something. I've heard Josh yell - playing - then Sam yells back. Then Josh, then Sam, then it's no longer playing, it's become a screaming match. Very frustrating. Even more so when we're all in the van together. I've had to pull over before to get everyone calmed down. You know the phrase, "It takes money to make money"? Well, sometimes, it takes a screaming mommy to stop screaming children. :-)

A few things I would like the general public to know about our lives and the lives of other families like us is....People with autism - no matter their age - are people first. They themselves are not a disability. It's as simple as changing the way you refer to people with any disability. It grates my nerves to hear people refer to our family situation as "The Broady's have an autistic son", or "autistic kids", etc. That kind of phraseology puts the disability first and the person second. Change it around. I have a son who is affected by autism, or who has autism. "Autistic" is a defining word. Our children are not defined by their disabilities. They find their value and worth in God, not in a disability. I have a friend who's youngest son has Down's syndrome. He is not "Down's". It is a subtle difference, but as a parent of a child with autism, it is a big difference nonetheless. It makes a difference to me. Also they can be supportive and more helpful to families with special needs by being more sensitive to the needs of the parents for some down time. I am not nearly as affected by this as I know so many other parents are who have to care for their children with physical impairments around the clock. Many children with autism have sleeping issues. Either they fall asleep okay, but can't stay asleep, or they can't fall asleep at all. I know parents who will never have a normal night's sleep because they have to care for their child during the night too. Even nighttime doesn't give them a break. If there are siblings involved, that is even more challenging.
Offer to take the siblings for a play date for a part of the day, or a whole day, or even overnight (if you are close friends and have a trusting relationship with the family). Our biggest struggle is having to pack up all the kids wherever we go. How wonderful it is to just walk out of the house and get in the car without dealing with car seats, or forgetting toys and safety blankets, etc. Offer to come to the house and send the parents for a night out. Some churches have respite programs just for families of children with special needs. Your whole family can volunteer together (if you have middle school or older kids), and be servants to these families who come. The parents can drop off the kids, who are cared for by individual trained buddies, then go out for 3-4 hours for some much needed alone time. Some parents rarely get to have time to themselves because one of both of them work during the day, then they care for their children in the evening and sometimes through the night as well. Consider starting this kind of a ministry, as our church is now.
If you are financially able, find out if the family needs any particular equipment. For instance, we need a hammock chair swing and gymnastic parallel bars for Sam to use, for both calming down time (the swing does wonders for him and we don't have a play set), and improving strength. It helps strengthen his low muscle tone. There are websites that cater specifically to special needs. A simple Google search will give you tons of ideas. Some of these things are relatively inexpensive, while others are overwhelmingly expensive. Sometimes even the littlest cost is too much for families of kids with special needs. Find out if they have a specific need, then get a group of friends to go in together to buy it for them.
Many kids need special foods for their diet because of allergies. These special foods are NOT cheap. My Sammy can't drink cow's milk. He has to have rice or almond milk. It's almost 3 dollars for a quart, which can go in less than 2 days. His autism also causes a lot of issues with eating. There are only certain things he will eat. He truly will refuse food to the point of medical attention, so we HAVE to cater to what he will eat. Help a family stock up on certain food items for their child. Give gift certificates for groceries, for date nights, or just money to go towards therapy expenses. Families spend literally thousands of dollars each month for necessary therapies that are not covered by insurance or grants. A lot of families have taken out second mortgages, sold cars, moved to a smaller home - whatever they could do to pay for therapy. I could put Sam in an incredible ABA therapy program, as he used to be in, that would probably make a 100% difference in his behavior and eliminate his need for school... if only we could afford the $4000 it costs per month.
All in all, just be aware of their needs and be sensitive to the fact that it is embarrassing for them to ask for help. Sometimes it's embarrassing to be offered help. But we are grateful beyond measure. One more thing - parents of special needs children are regular people too. They need friends just as much, if not more, than anyone else. Don't be afraid to ask them about their family. I am grateful Jaime asked to write about our family. It shows a desire to understand them and to be involved in their lives. I want people to ask me how to talk with Sam when he shrieks in their face. It's okay to talk to parents about their children. But do NOT pity us. We are not ill-fortunate people to feel sorry for. Have compassion on our situation, yes. Show us love.

Kyle and I have made great strides together in viewing and approaching our children with love, compassion and grace. We pray for wisdom and discernment to know how to handle every situation that comes our way, and how to teach these principles to our children as well. It brings great joy to my heart to hear Benjamin exclaim how proud he is of his brother when he sees Sam do something. He finds pictures or projects Sam made at school and tells Sam how proud he is that he did that and gives him a big hug. I remember just about a month ago when Samuel told me he loved me for the first time - spontaneously, without imitating me. It's so often taken for granted that your child loves you. But when he never tells you on his own, you sometimes wonder as a mother. It made me cry when he told me. Another accomplishment I guess, would be all the boys together, growing and learning how to live with each other, good times and bad, and being sensitive to Sam's needs. We glory in the little victories every day, which will eventually add up to a lifetime of worthy accomplishments. Our hope and prayer is that God is glorified in each of these celebrations.

Every day brings new things - sometimes old things in new ways. There are certainly times of anger, frustration, and the "what-if game". But there are moments of joy, of celebration, of this life God has entrusted to us: a child He made in His own image. I pray my story can be an encouragement to other parents going through the same things.


Post a Comment