Jan 27

Money!

In life, money is not the answer and it does not bring happiness. I very much no that. BUT I will argue that it really and truly helps in a lot of areas. Financial security brings peace of mind. It can also is imperative when family members fall ill or are in need.

A child with autism has significantly better chances of their symptoms decreasing when care-givers and parents are able to utilize as many treatment options as possible and from as young of an age as possible. The reason I know this to be true is from personal experiences, reading and knowing what I do about autism for the last 5 years.

My husband and I have been talking lately a lot about how Brody. Brody is 7 1/2 years old and extremely behind in his development in all areas. Time doesn’t slow down and Brody fails to make as much of an improvement as needed. There are some areas he is more behind now than he was when he was 4. We have been fighting our state government for even the most basic services. We need more interventions, more treatments and to do way more to give Brody his best chances to improve. Unfortunately, many of the autism organizations do not have programs and funds available to us which is a bit sad cause entities like Autism Speaks raise lots of funds and nothing is available to Brody that would actually benefit him. I do not say that with bitterness cause I know there is vital research always happening but it is a fact that many times the services and money does not translate to help for the average child with autism.

We do not have the income to provide these treatments and insurance does not pay for many appropriate and necessary treatments. Instead of feeling sorry for ourselves, giving up or starting a life of crime to pay for these things 🙂 we decided to set up a fund for Brody. Yes, it would be great if I could get this going by making crafts or starting a clothing line but I am void of those abilities. The link is below in this post and will always be on the sidebar of this blog. It is very difficult to ask strangers, friends and family for any money at all. I know more than most how difficult these financial times are for many.  Just as parents are desperate to help their sick child, we are desperate to do all we can for Brody. Desperate for me is the equivalent as begging and removing my pride for his benefit. We have received generosity over the years from many. We are humbled at the love and support we constantly feel. My husband and I feel we are taking a huge leap of faith that anything will come of this fundraising and we realize we aren’t doing anything like a run, bake sale or yard sale to get it going. At this point we rely on the miracle of the internet and social media to get the word out.

And just so that everyone reading understands and knows about what donations would pay for, here is just a short list of therapies and treatments for those with autism:

  • Neurotherapy or neurofeedback
  • Hyperbaric Oxygen Therapy
  • Music therapy (mostly private pay these days)
  • Social groups
  • Biomedical treatments including supplements, homeopathic and diets
  • Relationship development intervention (RDI)
  • Sensory Integration
  • Auditory integration
  • Art therapy
  • Brain mapping
  • Hippotherapy

These are just a few of the therapies and interventions

Brody’s fund

 

Dec 30

Marriage

Today is my 10-year wedding anniversary. It seems almost unthinkable that this day is here. Not because 10 years of marriage is unheard of or that it has been miserable in fact it is far from that. I suppose it is just 10 years is a long time considering I am a couple months away from turning 31 years old. Somehow, I do not feel that old but at the same time being married 10 years would make anyone feel like they are starting to get old!

Thinking about how life has gone for my husband and me over the past 10 years has caused me to realize that I cannot do much without him. I do not say that as a helpless woman who has to have a man in her life to have meaning. The relationship we have sustains and brings meaning and a reprieve from life when it is most desperately needed. Our relationship has progressed and evolved over the years from a 16 and 17 year old falling in love to adults who have built a home and brought children into this world. We work well together through projects and in parenting. Instead of letting life drive us apart as some relationships have fallen victim too, it has stayed strong despite everything and in fact helped. There have been days years back when I would spend the day cleaning up Brody’s poop that covered walls, furniture and floor as well as sleepless nights before melatonin was introduced to Brody. These times left me drained and worn in all possible ways. If I did not have my husband coming home or sleeping next to me, not just relieve me but to be the only one to know what I went through I am not sure how I could have gone through life and remained functioning.

We have experienced emotional heartache from parenting a child with autism, years of balancing work, school and family, financial troubles, death of a family member, and the stresses of everyday life – my husband and I have been there for each other. To comfort, to talk, to sit quietly, to cry together, eat, to lean on each other when we feel we cannot go on and many times just laugh at something funny as a reprieve from life even if it is just for a short time.  I write this post because whether you are married, have a boyfriend/girlfriend or just a person who makes a significant difference in your life, these relationships are needed for our survival and happiness.  I pray and hope that every person can find someone who fulfills them, loves them , and strives for the other’s happiness.

Dec 15

Christmas and Autism

I love holidays. From the big ones like 4th of July to Halloween and Thanksgiving – I love it all. I love the little celebrations with corned beef and cabbage for St. Patrick’s Day to the cards, children give to each other in their homemade boxes at school for Valentine’s Day. Perhaps it stems from my childhood memories of these holidays. My mom would always do at least a little something for the holidays. A breakfast dyed green for St. Patrick’s Day to years of memories of Halloween costumes, trick or treating and the countless traditions held for Christmas.

Once I became a parent, holidays was one of the few things where I was eager to have more kids and for those kids to get older so we can make new traditions and build new memories with my own family. As Brody got older and I patiently waited for him to notice and understand these holidays, his symptoms of autism increased. It quickly became that Brody enjoying holidays was far from my mind. Too important was Brody getting to the developmental level he needed to be, running around to appointments and getting therapies going. I still focus on those things until a holiday comes around and then the reminder is there, as one more thing I add to the list of what makes me feel separate from the regular, everyday life others lead.

Christmas has probably always been the toughest. It can be a selfish sadness because I do not get to have the same parenting experience as everyone else does around Christmas. No matter what I say, read or teach it seems at 7 years old, my son has no idea that we celebrate Christ’s birth on December 25th and that is what Christmas is all about. He does not talk for weeks ahead of time about how excited he is for Christmas. He does not comprehend much about Santa Claus. On a less selfish note, I feel sad for Brody that he cannot express to us what he wants for Christmas, he does not understand asking Santa for presents or the concept of giving presents to others. (I know most kids have a tough time wanting to buy others presents but Brody does not comprehend the idea).

This year I have and continue to try to get my brain to bypass these negative thoughts. Like anything in life, focusing on the negative fills a person with sadness, discouragement and only gives birth to the idea of giving up and only being sad. I often feel my sadness is justified and wallow in it. I have instead tried to focus on the simple miracles of what Brody displays as remembering and enjoying about the holiday season. Firstly, the past couple years as we put up the tree and decorations he is so excited for it. He pushes it to be done at once. This year we bought a new tree and as soon as we brought it in the house, Brody insisted on getting it out of the box and for Jake and me to put it up. Then he looked for ornaments to put on and would not stop until it was all done. Though he did not tell me, he knew it was Christmas time, the tree goes up, and ornaments go on. Another way Brody has shown much excitement for Christmas over the years is through a few children’s Christmas movies. As this is still far from knowing that Jesus Christ was born in a manger, or to write a list and send it to Santa at the North Pole, it warms my heart because it is progress. Not only that, but Brody’s joy in watching Mickey’s Christmas Carol, Charlie Brown’s Christmas, Frosty the Snowman and the Dr. Seuss’s Grinch is that same sweet innocence children show when believing in Santa Claus. Brody expresses his Christmas spirit and innocence when he lights up watching these movies. Brody quotes parts of the movies throughout the day. My heart and eyes swelled when for the first time hearing Brody sing Hark the Harold Angel’s Sing. Brody did not learn this from the hymns at church and Brody does not know what the song is about but he heard it on Charlie Brown’s Christmas.

Thinking of all these things is proof that Brody soaks it all in and though he rarely verbalizes what he sees and knows he can show us what he cherishes and loves this time of year. Maybe I am still a bit naive or nostalgic but I also feel this time of year has some magic and light in it and it speaks so fully to children and that is why I have noticed these things in Brody. His eyes sparkle throughout the season and I know he loves this time of year just like any other child.

As an adult woman and mother, this time of year I often think of Mary, the mother of Jesus. The love she felt for her child speaks to mothers and those who love and cherish their children everywhere. We hold that baby in our arms for the first time and want to protect and cherish that child forever. It was a miracle that happened so long ago, but miracles, small and large still happen today. All I need to do is truly see and believe.

137 DSCN9244 DSCN9243 DSCN0881 DSCN0938 DSCN0435 DSCN0409 100_5133 100_5132 100_5139 100_5106

Oct 13

4 years

I have been thinking about this post for a while. I have a lot I want to say, many feelings about the subject and yet I sit down to type this up and I am not sure what to say. Sometimes there is too much I feel and think. It becomes a jumbled mess in my head. I will give it an honest try!

This day 4 years ago on October 13, 2009 Brody, who was 3 years old and 4 months, received an official diagnosis of autism. When I think back to that day, I processed the diagnosis two ways. In one way, the diagnosis we expected and Brody’s symptoms of autism had been increasing over the past couple years. A few months previous, the summer Brody turned 3 years old, he was exhibiting many sensory processing issues we had never seen. Due to these circumstances and the fact that the appointment with the clinical psychologist took a couple months, I had time to do my research and read up about autism. I knew the symptoms and realized that with Brody displaying a lack of communication, lack of social interaction, repetitious or restrictive behavior, autism was exactly what the doctor would diagnose. Therefore, in all regards, the diagnosis was something that I was expecting. It was just something we had to do to get the diagnosis on file.

The other way I processed the diagnosis was that it was real, this was happening and our lives as caregivers and parents was going to change even more. The reassurance we received when he was 18 months old, that with some speech therapy he would be fine was something of the past. The stories others told me about a kid they knew who was a late talker but was now fine, was not Brody’s story. I officially let go of the future possibilities that came with the ‘delays’ he had been diagnosed with through Early Intervention and tried to fully realize and comprehend our new one. And what was Brody’s future now…well the tricky little beast that is autism means the future is too unpredictable to really know anything. With work, Brody could get better, or despite all the work, he could get worse. Brody could live independently someday and be a fully functioning adult or he might have to live with us the rest of his life. This is simultaneously hopeful and terrifying!

I believe labels can be positive and negative. Some people hide behind it and let it be their excuse for everything. For others it provides clarity in who or what they are. I arrived somewhere in the middle there that day that Brody was diagnosed. So many meltdowns Brody had, unusual behavior he shows, I had to speak for Brody or tell others he could not talk. Now it all meant something and there was a label. Labels did not restrict us but provided an explanation to strangers, family and friends. I had a word that a doctor diagnosed Brody with so I was not just being a worried, negative, pessimistic or neurotic mother. I could find books, websites and support from others experiencing what I was going through. I did not do all that at once. I let myself have time to digest everything. I took a step back from some family and friends. Nevertheless, at that moment, driving back from the doctor’s office – the reality made me feel like an elephant was sitting on my chest.  Brody had morphed year to year, showing more signs of autism. For so long he had received some therapy, special ed preschool and help. We were trying but none of it had helped because at 3 he was severely delayed and instead of being ‘at-risk’ for autism he now had it. I am not sure where he passed the line. It did not matter because it was happening.

All of it, the two ways I processed the diagnosis, it should have helped me accept my life,  my son, my roles as his mother but that was when the forever fight in my head and heart began. I cannot accept because I want to keep fighting. I accept that Brody has autism but I will not accept that how he is perfectly fine the way he is right now. I know that does not really make sense. But, still I have felt that way ever since that day 4 years ago.  It is because for me accepting who Brody was made all the autism symptoms who he is and I believe that is not what he is.

There is a Brody in there that can answer the simple question, “What is your name?”

There is a Brody in there that can have a conversation with me

There is a Brody in there that wants to play with Ryan

There is a Brody in there that can make and play with friends

There is a Brody in there that can sit and talk with his Dad about the day he had

There is a Brody in there that can go to the store and pick out a Halloween costume

There is a Brody in there that can fight with his brother and say, “he hurt my feelings”

There is a Brody in there that will tell me how he feels

There is a Brody in there that will have his first crush

There is a Brody in there that will be nervous on his first day of Jr. High

I could go on and on but I do not want to seem like I am wading in my sorrows. Just wanting to properly express what did and continues to go through my head when I think of this day 4 years ago.

We have had some amazing successes and wins over these past 4 years and I am sure they will continue because they surely need to! Brody works really hard and he spends so many days with teachers, aides, provider, mom and dad bugging him to do stuff he does not want to do. He really is a trooper with it all and he continues to express his love through so many smiles, giggles, and hugs. Here are some pictures from over the years. They are some snapshots of Brody over the years.

Brody1 061 DSCN9124 DSCN0569 100_6294 100_3743 Brody without red eye

 

 

Oct 08

The haircut!

Since Brody was about 3 years old, he stopped cooperating when we cut his hair. Funnily enough, we had not given him too many haircuts before this time but when I think back to the first few haircuts, they were wonderful and it all was downhill from there! However, since Brody also does not allow me to manage his hair at all it is a necessity for Brody to receive regular haircuts. If he would allow his hair to be brushed, combed, gelled or wet then I could manage the parts of his hair that stick up and cause him to look very disheveled. I like being the mom that sends her son to school and out in public with clean clothes, clean body and hair that makes him look like he is taken care of! I like his hair a little longer but cutting it regularly is just something we do.

haircut1

I believe it is a mixture of reasons why he hates when his hair is cut. Having severe sensory processing disorder, Brody is hyper-sensitive to what is happening to his body. So touching his hair, combing his hair, and of course cutting his hair is not something he allows due to the strong effect it has on his senses. I can sort of pat his head nicely, it is not that he cannot be touched at all but it can’t be much. Making the matter more difficult is the anxiety Brody now feels when seeing clippers or scissors going towards his head. At this point in time, it is impossible for Brody to hold still during a haircut. For his safety we cannot use scissors cause of how much he moves around so clippers with safe attachments have been the poison of choice (that wording is more what Brody would describe if he could).

Brody gets a handful of haircuts each year. Each time we do it, the experience is so tough for all involved, Brody, the people who help cut his hair and the people who hold his body steady. I saw people because it takes a few. I am always involved. There have been times it has taken 2 or 3 people to hold him down in order to cut his hair. Brody violently thrashes around with all his strength, screams and yells and over the years, it has increased. (You would be surprised how strong a 5 year old is, let alone a now, 7 year old). Any onlooker who does not know the situation would think we are torturing Brody. No tactic of bribery, favorite movie, TV show, candy, toys, having him hold the clippers, explaining what is happening – nothing will help the process.

A haircut, such a simple thing for most children but for us, it is something that leaves me shaky, emotionally and physically. My mother has helped a time or two and afterwards I noticed how teary-eyed she was. There is no way to help Brody calm down and it makes everyone involved, except Brody, feel guilty as though they are hurting Brody. It causes feelings of helplessness that is tough to explain and that is in addition to the physical feat of holding him still.

I wanted to post this because we did this haircut fiasco yesterday and I wanted a place to record how these go. Perhaps someone will read the post who relates or it could help someone understand how simple things for children with autism can be an ordeal.

haircut2

Aug 15

Sports

I have two boys and both are very active. If I had a fraction of their energy levels, I would always have a clean house and would be able to start and keep up with multiple hobbies. My husband even jokes at times that harnessing children’s energy could be a source of alternative energy…if we could just figure out how! Unfortunately, I am the 30-year-old mom who can barely keep up with these boys and that is considering both expel energy while at school.  We run around, play chase, throw the ball to the dog, practice Jedi moves, spin around, pretend mom is a helicopter and the boys are passengers and other energy-sucking activities.

One way that parents get their child to expel energy, build character, and, if lucky enough, develop talent is organized sports. There are many other good qualities found in this activity such as teamwork, interacting with peers, good sportsmanship, following directions and learning new skills. All around, I am an advocate for children playing organized sports.

As my husband is a huge sports fan, this was always a wish for our boys. However, we realized a while ago that some of Brody’s symptoms of autism would make organized sports difficult.

The last two years my son received numerous fliers sent home from the public school he attended. Even though he is in a special education class, the fliers were for every child that attended school. Naturally, I always looked at them and noticed the advertisement for extracurricular sporting activities. One of the reasons we originally sent our son to this particular public school was because about 20% of the students attending were in the special education program. We thought this would help him be around staff aware of these types of students and not treated differently, amongst other reasons. This thought did not translate to the after school sporting programs. None of the organizations that provided these activities could accommodate a child with special needs.  This was unfortunate because all that was needed for some, like Brody, was a bit of extra time, attention and understanding of some of the disabilities in order for these kids to take part.

After talking with staff at some organizations listed on the fliers that provide the after school programs, I sort of had a moment and formed this speech in my mind about equality. I thought to myself that every child has the right to go to an afterschool activity whether it is chess or Lego club and even sports. There are many events and activities children and teenagers with disabilities do not take part in but something like this should at least have the option for an alternative program. All that is needed is a little adaption by staff and the environment perhaps.

Well daily life and managing other aspects of Brody’s care meant I put my thoughts and wish for Brody to play sports on the backburner and focused on other things. Just the other day sports came back to my mind. I did a little search and found other options. I guess I was thinking too small before and did not do the searches needed. Both Autism Speaks and Autism Society have local links and list of organizations for a bunch of different needs. Autism Society has local chapters all over the U.S. Within each of their websites are information and resources. Organized sports were one area listed! For readers in Arizona, here is an example of what I could find:

Arizona Disabled Sports

http://arizonadisabledsports.com/

The Miracle Network of Arizona

http://www.mlaz.org/

Raising Arizona Kids – adaptive sports

http://www.raisingarizonakids.com/adaptive-sports/

For those outside Arizona, it seems a great resource can be your City’s website or even surrounding cities. The cost of many of the programs through the City is inexpensive.

In addition, a great resource can be the National Disability Sports Alliance

http://nationaldisabilitysportsalliance.webs.com/

What really touched me during my slight bit of research is the kindness and care of some of these organizations. The websites speak of that kindness though of course I have not met or talk with anyone. The people who work at these places and help make these events happen truly want kids and teenagers of all types to be able to have the opportunity to play sports. Not sure why I was touched by I read a quote on the Miracle League of Arizona’s website – “Every child deserves the change to play baseball.”

We might get Brody in the City program in an adaptive soccer league. We’ll see how it goes!

Aug 07

Insurance

Health and dental insurance are a pain to most people. However, for parents with a child with autism it can be much more of a hurdle in life. Over the years I have come to find out that most insurances, the one through our State (Brody has a secondary insurance he qualified for because he is on Arizona Long Term Care) and any of the private insurances we’ve had through my old job or my husband – they all try to shirk the responsibility of paying for anything. I know this first hand and over the years have (cumulatively) spent hours on the phone with both types of insurance companies and we have numerous doctors and specialists appointment over the years.

Example #1): We finally found a dentist who worked well with Brody and understood his sensory and behavior issues. I knew the dentist did not take both of Brody’s insurances but I was told I could bill the secondary insurance. I did just that after we incurred a very large dental bill. It was largely because it has taken almost a year of working with Brody for him to sort of tolerate a minute (if that) of brushing. Therefore, I knew his teeth might be in bad shape before we even went to the dentist. But that is why Brody is on Arizona Long Term Care, right? Cause his disability means there are extra dental and medical bills than the average child. As most people know, dental bills can be quite high even after insurance pays their portion. Well the conclusion of all the expenses is that the state insurance, Mercy Care was not able to pay anything towards Brody’s dental bill. This is because the state of Arizona passed a law back in 1997 saying that private insurance companies have to pay the same percentage of a bill as the state insurance IF it goes over that percentage then the state insurance cannot pay said bill. Because our private insurance has their own calculations on how much should be paid than the state insurance, we suffer the consequence because they refuse to pay! Okay I hope that reads okay because even explaining it in words is not only frustrating but also it makes NO sense. We are left with a bunch of dental bills. I was told the solution is in the future to find a dentist that takes both insurances. Well since, it took me a couple years of referrals and a dozen phone calls to find the right dentist capable to treating Brody I said I would “try” [insert sarcastic tone]! Next time we can either try a dentist who might not understand how to work with Brody (which usually means the same for the staff) OR continue to pay hundreds, if not, thousands more.

Example #2): It has been scientifically proven that Applied Behavioral Analysis (commonly called ABA) significantly helps lessen the symptoms of autism. Diets, nutritional supplements and sensory integration is debated among many professionals as treatment for autism but there has been something like 70 academically and peer-reviewed studies on the subject of ABA thus that is why I am saying it is proven. Unfortunately, insurance does not see things the same way the medical, scientific and academic world does. Unless it is a state where autism insurance reform has passed, most, if not all insurance companies do not cover services related to autism unless a person has purchased some amazing insurance. This applies to bigger companies that purchase insurance plans. These policies are most often self-funded which means the companies fund the claims and the employees pay or contribute to the monthly premiums of the policies (which was the case when I worked for Bank of America and currently through my husband’s work). Policies such as these do not have to follow state mandates only federal mandates. The head of the HHS advised those working the Affordable Care Act not to include ABA as a covered service. With that last hope dashed, the accountability then goes back to Brody’s state insurance and there it will stay! The entity that manages Brody’s state insurance is DDD. On this topic, DDD writes policies that dictate quite a bit of requirements a child has to meet in order to get DDD’s equivalent to ABA therapy.  First and foremost, it is a requirement by Arizona that a child needs to start the service before they reach 4 years old and sometimes like to see it end by the time the child reaches 5 years old. Age limit for ABA is unheard of to professionals in the behavior treatment or autism community. ABA can help anyone; age does not dictate its effectiveness. This policy of DDD is laughable because there are a very high percentage of children who are not even diagnosed until their third year of life! I could write a book all about this subject and our experience. I have spoken with university professors and experts in the ABA field so I feel I can say all of this. The issue specifically, my husband and I engaged in an administrative hearing in front a judge and we went toe-to-toe with an attorney from the State Attorney General’s office!!! All because I was fighting for my son to receive a service basic to anyone with autism and yet I did not even know DDD had a program like it until Brody was 4 months before from turning 4 years old. We resolved the issue but it took almost an entire year and half and a lot of my time learning the Social Security Act and learning my sons rights. The service is at least $50,000 a year so there was no way we could pay for it. Our private insurance we pay for every month has never covered anything related to autism. Speech therapy, occupational therapy, music therapy and anything else is at the mercy of the State insurance and all the regulations.

These are just two examples of the ongoing and past headaches we have had to endure. I have heard so much bull**** out of the mouths of reps to lawyers. Some were innocent people just doing their jobs and repeat the policies. Others do not seem to let anything penetrate their tough exterior. I have heard the comment, “well it is the parents responsibility to raise their child” as a reply to why we cannot have more habilitation hours. I am sometimes treated like a b**** cause I get upset when people don’t realize they might be doing their job but I am advocating for services for my son because 1) we can’t pay for it privately and 2) these services directly and significantly affect his progress and development.

I say ALL of this out of frustration and to lay out our predicament, which I am guessing, is the same as MANY others. Some say stop paying for the insurance through my husband’s work. Well we pay the same monthly premium despite the number of children we have. Others have said for me or my husband to go after jobs where the company’s insurance policies do follow the insurance mandate. That is very difficult right now in my husband’s career to be able to do that. I also firmly believe that no state government or health insurance company wants to incur the cost so policies and regulations written so both do what they can to evade responsibility. In the meantime, while bills are not paid more great doctors, dentists, specialists, and programs stop accepting insurances or not specializing in working with children with special needs. All the while, our son does not progress and thrive when the help and answers are out there – we just can’t afford it

To me that is the greatest injustice of it all. The growth and improvement of our son should not be related to our income, job or where we live BUT IT DOES.

Yes, this is a massive and major rant! As the mother of a child with autism, I happen to have many experiences related to this subject so this rant was bound to happen at some point. I hope people who read this can learn from this or at least see this subject from a different perspective.

P.S. For those who read this and can’t help but want to go off on the Affordable Care Act (negatively and often referred to as ObamaCare) just know that this post is not to debate and discuss it. My experiences with insurance has only helped me see that there does need to be reform and in a major way.

Jul 16

Brothers

God bless you if you have one child, but I don’t think anybody should have just one child. Everybody needs a sibling. I have siblings, and I have so many amazing, precious memories with my siblings. I don’t know what I would do if I had been an only child.” – Sherri Shepherd (http://www.brainyquote.com/quotes/keywords/siblings.html#0AFDtAFXIQcj32Jm.99)

Brody and Ryan

I think about the quote above because there are times that I feel like I have two children but they live a life sort of like only children.  A deep hardship in the ordeal of parenting a child with autism is their social skills or lack thereof. Not all children on the autism spectrum have a lack of social skills or severe lack of social skills. For my son Brody, there is an extreme lack of social skills or interest in peers or any children at all. Brody will seek out interaction from adults at times but that seems to be his social limit. Brody not seeking the social interaction coupled with his extreme lack of communication makes a relationship with a parent difficult to cultivate let alone a relationship with a sibling.

I grew up with 5 siblings and my husband grew up with 6 siblings. We are all very close to our brothers and sisters in our family. These relationships built our character and the friendships with our siblings continue to this day. Even the siblings we are not as close with still hold a special place in our hearts. A sibling is a person we hold similarities to and share countless memories. A sister or brother is the person we first develop many of our social skills, spend time playing with and help us evolve as a person. It is an automatic friend for life!

The recent difficulties between Ryan and Brody have not always been as big of an issue but as the younger brother has gotten older, it has. Ryan is now 4 years old and Brody just turned 7 years old. As with most typical functioning children, Ryan constantly wants to play. Whether it is pretending he is Luke Skywalker, reading books or playing outside, Ryan likes a friend to play with. Previously Ryan did not mind that a friend to play with was either me, Dad, an uncle or an aunt. Sometimes I was able to have that ‘friend’ be a cousin near his age or my friend’s child. Unfortunately, I do not often have other children at my disposal to play with Ryan. Ryan has never been one to be able to just play with toys and be content. Ryan has always loved and craved to interact with others. Even when Ryan sits and watches a movie, he wants someone else to be there with him. This summer though, has been especially rough as Ryan is desperate to play with his brother and Brody is not in school and constantly home.

I hear Ryan constantly say to Brody any of the following:

“Hey Brody, do you want to play?”

“Brody do you want to play light-sabers with me?”

“Hey Brody do you want to watch a movie with me?”

“Brody how old are you?”

“How was school today Brody?”

“Brody, let’s eat”

“Brody, do you want to sit by me” or “Can I sit with you”

“Brody, can I play with that?”

“Brody, I love you so much”

“Brody, let’s hug”

Not once, have I seen Ryan say any of these statements and Brody even make eye contact, let alone respond. For a while, the effect of Brody’s disinterest has not only been Ryan reaching out but Ryan doing anything to Brody for some type of reaction. Ryan will bug Brody, take toys, hit, push, tell him what to do, take things away, etc. For him psychologically, any reaction from his brother is better than no reaction.

Many have told me that Brody does love Ryan in his own way. I have also been told that in time, when they are older, they will be the best of friends. Well no matter what the future holds, it is difficult NOW to watch these things daily. It does not stop the effect this sibling relationship – or lack thereof – has on Ryan mentally NOW. As much as these things bring tears to my eyes and depress me, I have a small place in my heart that hopes and longs for the sibling connection to be made by my boys. I am also realizing, with behavior intervention, that my role as their mother is to teach Brody HOW to play with Ryan and how to have a brother. I never thought I would have to do this as a parent but it is now a role I need to embrace.

I guess I feel compelled to share of this problem because it hangs over me and pulls at my heartstrings daily. As with most things I write about on this blog, I hope sharing will help me or others

Jul 15

Link to something I wrote

I wrote a little something The Autism Site

Here is the link for any who want to check it out

http://theautismsite.greatergood.com/clickToGive/aut/story/autisms-effect903

Jul 03

Guest post: Brody’s Joy

I asked my mother to write a little something on Brody and this is what she had to say:

Brody’s Joy

There are challenges and sorrows with a child who has Autism. There is lamenting and grieving for what might never be—the normal days of a child’s life.  There is an aching for them to talk to you, to have friends they are close to, and the unfulfilled dreams for the future. I have watched Brody since the onset of Autism and watched what felt like the doors of his mind  close —at least to us– and I have been thrilled since then to have even the smallest connections; like his meeting my eyes for longer than a moment or trying to talk to me or taking me by the hand to lead me somewhere.

But I have also seen that despite all that appears to be absent and might possibly always be absent—there is something that Brody has that other children do not have.  It is an infectious joy.  I am not sure where he has found it.  I am not sure what causes it. But I can see when he is filled with it.  There is no child with such a happy countenance as his. I have never seen such light in a pair of eyes.  When he is happy about something he reacts with his whole body.  He cannot keep still, and he sort of erupts with pure joy. He puts his hands up to his face and rubs it as if his smile is too overwhelming even to him.  He laughs the most delightful little laugh that is the most contagious thing I have heard.  I have seen happy, playful children before— but this is something more.

 I have wondered what it is that makes him feel these moments of pure joy.  Because he cannot talk, I cannot ask him, and he cannot tell me and so I just watch.  Sometimes it seems to be something he sees; a book, a stuffed animal, a favorite toy.  Sometimes I wonder if it is a memory or thought about a movie he loves or a game he has played.  Other times I wonder if there is something far beyond my understanding that has nothing to do with his external world.   It is almost as if God has given him more joy than the rest of us because of what he does not have.

This child, whose world by all outward measurement is very limited, finds and shows so much happiness and joy that it makes me wonder at myself.  Can I not do the same?  Can I not find joy in everyday life and not wait for the ideal circumstances?  Can I allow little, seemingly insignificant things to bring a smile to my face and a light to my eyes?  Brody makes me want to change and to have even a tiny bit of his joy right now. 

Brody6

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