Friday, June 21, 2013

New Shoes

New shoes take time to break in. They seem fine at first glance, or for the first hour of wearing them. But then the byproduct of those new shoes emerges. You might get a blister or 2 as you try to get used to them. Or squished toes. Maybe sore arches. Some shoes take longer than others to get used to. They get worse before they get better. But they are beautiful on the outside and we know that they are worth the time it takes to break them in.

The first couple years after Andrew regressed into Autism, I couldn't imagine what our future would be like. Andrew was not making strides, at least not quickly. I would say that from 2 to 5 years old were the most difficult times for him. He was just so raw. These new shoes he was trying to walk in were heavy, and uncomfortable, and he hadn't learned how to navigate the world in them yet. And neither did we. We didn't have the tools or the knowledge to support him in the moment to moment struggles he was having trying to acclimate to these shoes.

I have met many parents over the years that are in this phase of the journey and their stories and struggles take me back to those days every time. The difficulties seem to be never ending. The physical and emotional pain leaves scars that seem to take forever to fade. It is so hard in those moments to believe that progress will be had. Things will get easier. The seemingly impossible will become possible. After 7 years on this journey I can tell you that it will. It may be painstakingly slow. And many blisters, bruises, and falls will happen along the way. But our kids never stop learning. They never stop making progress. Yes, there is a window where they can learn the quickest. But we are past that window, and Andrew is still making progress.

My son is still considered mostly non-verbal. He still stims. He still sleeps poorly often, and he still wets the bed almost every single night. He is still considered on the more severe end of the scale. However he has made huge gains in many areas we never thought he would. For one thing, his tantrums are much fewer now and the behaviors he does exhibit are short lived. You can ask any of our family members....get-togethers for the holidays were the worst. Andrew was usually a wreck the whole time. Meltdown after meltdown. We wouldn't get to visit at all and we would be counting down the minutes until it was over. Now, he loves the holiday reunions and he is the happiest person in the room.

He has broadened the foods he will eat. His diet had gotten so limited, that he would only eat 5 things. He went from never eating meat, dairy, or vegetables, to loving chicken, burgers, and cheese, and eating endless amounts of red peppers, cucumber, carrots, and tomatoes.

He went from never saying one word, to being able to parrot pretty much anything that is said. That echolalia has turned into catch phrases that he can use in context to get his needs met. And thanks to his "talker", he can now communicate the things he doesn't have the ability to say.

His aggression is pretty much non-existent these days. Due to his inability to communicate and resulting frustration, hitting was his number one form of letting us know he was upset for many years. But now he almost always stops short of hitting us and his brother (thank God), and when he does hit us he shows immediate regret over it.

It used to be impossible to take him places without major meltdowns and anxiety due to sensory issues. Anywhere really. Shopping, church, school, parks, and errands of any kind would spell disaster. Now, he is a better shopper than most kids I know. He hasn't had a tantrum in a store in as long as I can remember. He pushes the cart, and even helps me carry the groceries from the car.

He hated parks the most. He didn't have the physical ability to climb the structures, or to tolerate all of the noises he encountered while there. But now.....

One of the most fun accomplishments? Movie theaters. Going to the movies has to be one of the harder things to do with a kiddo on the spectrum. They are forced to stay still and focus for an extended amount of time. Add to that my guy's sensitivity to smells, lights, and sound. It is pretty much a 70% chance that something is going to set him off and it is not going to go well.

We started taking him to the movies at age 5. Baby steps. We took him to the AMC Theater and asked the manager if we could just take him into one of the movies just to see if he could tolerate being there. Maybe 5 minutes. He was in awe of it. He was so excited to see such a big screen. We did this a couple more times to acclimate him before trying to take him to a movie for the first time.

When we finally did take him to the movies, we took him to that same theater and the movie had been playing for weeks before we took him. We wanted it as empty as possible. I think it was one of the Ice Age movies. I don't think I have ever seen him sit so still for so long. He has always been a TV lover. So this was just even more awesome since it was the biggest theater in the area. The best part was after the movie was over. He ran to the front of the theater and stood under that huge screen, and danced and stimmed to the rolling credits. He has been a "big movie" lover since that time. And today and the end of Monster's University, he ran to the front and danced and stimmed under the credits as usual.

This was after sitting through the entire movie in a fully packed theater on opening day with minimal verbal stims. There were loud kids, tons of crackling bags and crunching popcorn all around us, and he didn't flinch. We didn't think he would ever be able to handle that. But he can. And he loved every minute of it. 

We will always have hurdles to overcome. Andrew will always have struggles. He is different. He will be judged, made fun of, and will always have to work harder than most to master seemingly simple tasks. But I know where we were. I know how far he has come. All to his credit for pushing himself to deal with things that are so difficult for him.

Some days are so hard. I get low. I wonder what could have been. I want to fix things for him. But today I choose to relish in the victories won. The times where he surpassed all my expectations when he mastered something I never thought he would. The times the shoes fit and he was able to run happily and revel in his accomplishments. They are no longer new shoes. He has broken them in. He is learning how to make them do what he wants. And they are taking us places I never thought we would go.

Sunday, June 16, 2013

I Am Blessed

I spend most of my time talking about my precious boys in this blog. The ups, the downs, the pain, the joy. The milestones reached in their lives, and in mine. But I haven't taken the time to write about the man in my life who is one of the biggest reasons we are able to accomplish the things we have. 

My husband Bryan. My other half. My partner in this crazy difficult journey who keeps me sane when everything closes in and I can't breathe. The man who works more than full time so that I can focus all my attention on my boys and their various needs. The man who comes home every night after being gone almost 12 hours and drops everything to play with his boys for those few precious moments before bedtime. He doesn't receive nearly enough credit for all of the things he does. And for all of the things he has helped me through. I can't count how many times he stood by me when I made stupid mistakes. 

We started dating back in the summer of '97. I was fresh out of college and over the years had a whole lot of growing up to do. We broke up a couple times. I chose stupid friends over him and made poor choices. He gave me the space I wanted, while still believing in the person that he knew I was. We lived hours apart most of our dating relationship. And yet we kept coming back to each other. The smartest thing I did was marrying him that perfect February day in 2003. 

Marriage is not easy. Love is not enough. Bryan and I have had our fair share of problems. Believe me. We have has struggles, gone to counseling, and worked hard to keep our marriage on solid ground. We went into this marriage with a "no way out" clause in our minds. And I am grateful. Marriage is hard in general. But when you have kids with special needs who take so much out of you daily, there is little left to give to each other. This is where the work comes in. And as the years go by we are getting better at doing this work. There were definitely times where we were lost and the grace of God was what kept us together.

Bryan is an amazing husband, father, provider, and friend. His boys know that they matter to him most in this world. He shows them that every single day. He makes sacrifices and decisions for the better of our family all the time. The biggest one he made was 7 months ago when he decided to have weight loss surgery. He made a choice that as scary as the surgery was going to be and as tough as life would be afterwards, he would choose the hard road to prolong his life and give his family the gift of having him as long as possible. It was the bravest, most selfless thing that he has ever done. And I have never been more proud of him. Just like when I had to make the choice to get sober (read story here), he decided that his family was more important than his comfort. He is my hero, in so many ways. 

He never complains that the house is messy. He always tells me that the dinners I make are delicious, even when they are super ghetto. He tells me that I am beautiful when I haven't had a shower in 3 days and I am still in my plaid pajamas. He tells me that I deserve breaks and makes sure that I get time for myself. He lets me use his tools to build things because he knows that I love working with my hands. And best of all, he doesn't judge me for the things I have done. I lose my temper. I am far from perfect. I never hear him bring up the past. He lives in the present. He doesn't keep a record of my past mistakes. He is proud of me. He tells me I am a great mother even when I feel like I am doing it all wrong. 

I have the best husband ever. I actually do. I don't tell him enough. I don't show him enough. But I know that I have been blessed with the most perfect man for me. And I thank God for bringing him into my life all those years ago. I couldn't walk this road with anyone else. Happy Father's Day Bryan.

Wednesday, June 12, 2013

In Honor Of Alex Spourdalakis, And The Many Others Who Have Shared His Fate

Over the weekend a young man with severe Autism named Alex Spourdalakis was murdered. By the 2 people who were supposed to have loved him and protected him the most. His mother and his god mother. They brutally stabbed him to death and then perhaps tried to take their own lives. They did not succeed. 

Read the story here

This is not a new phenomenon. I wish it was. But I have read news article after news article about mothers who have snuffed out the life of their child. With the excuse that they couldn't handle it anymore, or no one would help them and they got desperate to end the pain. I can already see that this woman will probably be given a break and many people will find that she had a good excuse for doing what she did.

I am not one of them.

I am sick of the excuses.

The public is divided on this one. Many are saying it was a mercy killing. Saying that she didn't get help and she had no other choice. Almost applauding her for loving her child so much that she was willing to kill him to put him out of his misery. Others are appalled and say she is a murderer and there is no excuse for what she did to her own child. Had this young man not had Autism, no one would be making any excuses for her. People with disabilities have no less worth than those that don't. I agree with the latter. This was not a mercy killing. It was horribly violent. They chose to stab him brutally, then they took pills most likely in the attempt to just go to sleep and never wake up.

There is never a good enough reason to kill someone. Ever. Everyone has their own battles. Everyone lives in their own private hell from time to time. Not everyone thinks that their pain gives them a good reason to kill someone. She was sick. She was wrong. All of the things that she did in those 14 years to try to help Alex. To try to give him what he needed to make it through each day. All the love she gave him and all of the advocating she did on his behalf; none of it matters now. No one will remember her for those things. What she did in the end is her legacy.

My heart hurts today thinking of Alex. And the many other children and young adults with special needs who have had their lives ended in this way. What they must have thought in those last moments. I shudder to think. We as parents are charged with protecting our children at the risk of our own lives. Not the other way around. I am terrified thinking of what life will be like for Drew when Bryan and I are no longer here. Most parents with special needs children live with this worry on a daily basis. But we work to be sure we do everything we can to prepare them for when that moment comes.

Maybe she was desperate. Maybe she was at the end of her rope. Maybe in her mind this was her only option. She was wrong. There are always other options. I don't pity her. I don't feel sorry for her. She will have to live with what she did for the rest of her days. At some point she will realize the full extent of her actions. Maybe she already has.

I fear that people are going to start to believe that this is what our children deserve if they are "too far gone" to be helped. Please God I hope that is not where our society is going. These are extreme cases. Most parents of severely disabled kids love them to the moon and back, and would never dream of hurting them in any way, shape, or form. I hope society will see that these isolated incidences are about the people who performed these hideous acts. Not about the victims, who's only fault was being who they were.

Heaven is lucky to have you, Alex Spourdalakis.

Friday, June 7, 2013

Why is Occupational Therapy so important?

This. This picture above. This is one reason why Occupational Therapy is so important. This is the first time I have been able to get James on a swing at the park. He wouldn't even stay in a baby swing for more than a minute. Six months ago I wouldn't have believed it if you had told me that he would not only tolerate the swing, but that he would say "swing fast". This is a huge feat for him to have accomplished. His brother Andrew finally got on a swing a couple months ago at the park and he is almost 9. Andrew did not get proper OT until we changed school districts last summer. It is obvious how important the right early intervention is to a child's progress when you look at my 2 boys.

People are always asking me what OT is and why it is important for my kids. I mean, they both can walk. Why do they need OT? Hopefully this will help people understand what OT does for my kids, and why it is important for kiddos on the spectrum.

Both of my boys have always had major issues with having their bodies on unstable surfaces. It would cause some extreme meltdowns when we would try to do a seemingly simple task. Like walking down one stair from our house to the porch. James still pauses and whimpers a little when he has to walk down that step with no rail to hold on to. But at least now he will do it. He is overcoming his fears and has more awareness of his body and where it is in regard to his surroundings.

When James started speech therapy right after his 2nd birthday, his speech therapist in the first 10 minutes of meeting him came out of the therapy room and asked me if he was getting OT. I said that I was fighting to get it, but that I was denied by the regional center. She insisted that he has a weak core, is unstable even sitting on the floor, wiggles a lot, and had sensory issues that needed to be addressed by an OT. Furthermore she told me, as I had recently learned with Andrew, that he would make more progress with his speech if he had OT services as well. This was something I wish I had known when Andrew was this age. If I had, I know that his outcomes would look very different than they do today.

Movement facilitates speech. A year ago I was told by Andrew's Speech Therapist that she was able to get more language and concentration out of him if she worked with him while he was sitting on a plank swing. She would do almost the whole session swinging him on the swing and working his goals. He would respond verbally more often. He was calm. Focused. Engaged. It was quite amazing how much they were able to get out of him when he had his speech in the OT room.

We have had the same results with James. Immediately after that first session of Speech Therapy, his therapist moved us to a different location that was further away from our home, but that had OT therapists and Speech Therapists working together with the kids. She had their OT assess him while she worked with him and figured out that he was much more receptive to working with her if he had the movement during the sessions. I was more determined than ever to get OT services for James. I fought for 4 months and was pushed back and forth between Regional Center and Kaiser. Finally, after having to go in front of a mediation judge, the Regional Center approved OT services for James. His services started in November.

At that time, he was having lots of meltdowns. He would scream and shake in terror if his therapist tried to get him to crawl through a tunnel, or walk up stairs, or sit on a yoga ball with her holding on to him....working on his balance. His anxiety and so high and he was non compliant with many of the tasks. Forget walking on a balance beam, swinging, etc. His OT session focused a lot on movement at this time. The OT would make obstacle courses with highly preferred items at the end of it to get him to learn to navigate his body through the tasks. Walking up ramps....jumping over small items....etc. It may not seem that movement like this is important, but it really focuses on safety issues and social issues too. Imagine him trying to navigate a park with other children and learning to play when he has all of these problems with movement and balance.

The other extremely important part of OT is how they deal with Sensory Integration issues. Andrew's sensory issues are extreme. He is sound sensitive. He is a sensory seeker. He needs deep pressure compression squeezes on his body constantly through the day. He is orally fixated and needs input in his mouth often throughout the day. The list goes on. James also has sensory needs. He asks for squeezes often throughout the day. It is so nice that he can tell me when he needs it now. It prevents the meltdowns he used to have when he was dis-regulated and couldn't tell me. OT's will help parents and school implement a sensory diet that is appropriate for each individual child. This will help them to regulate their body throughout the day, and minimize behaviors due to being unable to get those needs met. This is as important as all other aspects of OT.

Now, 6 months after starting OT, James is a completely different kid. He will willingly crawl through tunnels, walk up and down stairs holding the rail, go down slides, jump off high surfaces, and of course swing. He will even hold on to a zip line 5 feet off the ground and zip down and fall into a crash pit full of soft, fluffy foam. It sounds so fun for kids to do, but for him it was hard work and it filled him with fear. I am so proud of how far he has come. You can't imagine how much this has helped him on play dates the park.

Not only has his gross motor skills improved, but his fine motor has come a long way as well. He has a lot of problems with bilateral hand movements. Getting his hands to work together. So they work a lot on tasks that require passing items from one hand to another. Like stringing beads, pulling a rope one hand over another to pull himself along the floor on a platform with wheels, etc. These tasks work on core strength and balance as well which are so important for him. He has always needed to put at least one hand on the ground to hold himself steady when he is sitting on the floor, and you can't do that if you are using both of your hands to perform a task. Think about when you need to put on your shoes and socks. That is impossible with only one hand. All of these tasks that seem unrelated to everyday needs are so important in giving him the skills to be able to do self-help on a daily basis.

One of the biggest things I have learned in this process, is how imperative OT services are for kids on the spectrum. I have also learned how terribly hard it is to get it. Schools rarely will provide these services unless you can prove an educational need for them...and even if you can, they usually only have one OT for an entire district. I am grateful that laws have passed in California to make it easier to get OT through insurance companies, but you still have to fight for it. Don't give up. If your kids sound like mine, advocate for OT services for them. It is for so much more than just basic motor skills. My kids wouldn't be talking as well as they are without OT. They are stronger, safer, their meltdowns have minimized, and they have learned coping skills to help them get their needs met. Fight for it. It is that important. 

Wednesday, June 5, 2013

Dear Neighbor With The Magical Mailbox

We walk by your house every evening as a family. My son loves your mailbox. I don't know if it is because it looks like an old barn, or the fact that it is the closest one to the street that we pass. It may be the shape, or the large door that just calls him to open it up and peek inside every time we walk by.

Lately he has taken to putting little trinkets from our walk inside the mailbox. It may be a special stick, leaf, or a rock that caught his eye as he shuffled along. He will carry it the 4 blocks or so until we get to the magical mailbox. He slowly opens the door and peers inside with a sheepish grin. The days that his "gift" from the evening before is still inside make him especially happy. Like a special treasure saved just for him. I imagine that the days that his gift "disappears" also bring him joy. He smiles slyly, and proceeds to put his new gift into the mailbox. Giving it a new home until the next day when it is time for our nightly walk.

Part of me wonders if I should allow him to do this. I know it is probably an unwelcome surprise when you open the mailbox and find a solitary leaf or stick waiting for you to discover with your mail. But the other part of me says that he gets so much joy out of something so simple....I don't have the heart to make him stop. Your mailbox is probably the reason that he happily puts on his shoes when Dada comes home and runs out the door to have our nightly family time out in the cool evening air.

So I will let him continue finding joy in the simplest of things. Perhaps one day you will find a note in your mailbox explaining where these mystery gifts come from. It might even have a little drawing from my guy. And a very special rock to top it all off. Until then, thank you for your magical mailbox that brings so much happiness to my boy.