Tuesday, April 30, 2013

Surreal

Last week I went to view Andrew in his school placement in preparation for the IEP this week. Andrew has been in his current placement since March 4th and this is the 45 day review to finalize placement for the next year. This visit was a chance for me to see how he has adjusted to this new program. Also it was a chance to see if he could perform with me present. In the past, classroom visits were usually impossible because if he saw me he would want to go home. Not anymore.
 
Andrew working with his speech therapist to make a waffle step by step. He had to look at the visual presented and find the words on his "talker" before he could complete the step. Then he had to perform the steps independently. There were over 20 steps. Broken down little by little from getting the ingredients out of the fridge, to opening the lids to the containers, to finding where the plates are kept. He has to navigate his way through the kitchen to complete these steps. Nothing is done for him. I love how his school uses cooking to teach. He is so much more engaged when he can do a highly preferred task and see the results of his hard work immediately. Or taste them. :)

A year go at this time I was frantically searching for an appropriate placement for Drew as it was clear the the school he was attending was not able to serve him. He had not met his goals in 2 years. He was not getting appropriate Speech and OT services. We needed to find a place for him that could deal with the behaviors he was manifesting that were never addressed, as well as a place that was well versed with AAC devices. We needed a place that focused on real life application of skills, not just academics.

Enter his current placement. I found this place over a year ago and knew that it was the most appropriate FAPE for him. I looked at every single school available within a 30 mile radius. I did months of research, trying to figure out exactly what he needed, and what I had to do to get it. And believe me, I would have sold a kidney on the black market to get in there.




At snack time, the kids practice money and math. They have to "pay" for their snacks by handing the teacher the right bills and/or change for a small serving of whatever they choose. Andrew has to use his "talker" to request the item he wants to eat, and also has to find the amount of money it costs on the talker and hand the teacher the amount before he gets his snack. They do this over and over during snack time so they get loads of practice.




This will be my 6th IEP this school year. Yes, that is how hard it can be to get your child what they need. And I am not in a letigious district. However, they aren't just going to place a child in a Non Public School unless they have no other choice. I had to prove that my son had been failed by his prior placement, and that he would not be able to make progress unless he was placed in this particular school. I lost so much weight, sleep, and my anxiety was through the roof. 

Andrew playing catch with one of his teachers during break time. Even during play, the teachers are feeding language to the children constantly. They also require language use in every opportunity either by vocalization or using a talker or icon exchange. They give them lots of sensory breaks when needed and in turn Andrew is happier, and more regulated in this program than in past programs. The program is truly catered to the needs of each individual child and that was very obvious as I followed Andrew around throughout the morning.

 
We endured a 2nd failed placement and then 4 months of Andrew being without a school program at all until we were finally given a spot at this school. It was worth the fight. It was worth the wait. It was even worth the regression Andrew went through due to lack of appropriate services. I am forever grateful to the school district for agreeing to place my son in a school they had never contracted with before. It was a huge leap for them. He has adjusted well to this new placement, and they are meeting his needs. Their work acclimating him to his communication device has been invaluable. Their use of visuals throughout all aspects of the day is amazing. And the way they troubleshoot behaviors and work with the parents to figure out the best way to handle them at school and home is a welcome change to how things used to be.

It is so surreal to me. I can't believe that we are here now after so long of not knowing what would happen or how this battle would turn out. My final IEP of the year for Andrew will be in 2 days. And then I can relax for a while. Well, until my younger son's IEP in June. Sigh. The battle continues. 


Saturday, April 27, 2013

Stigma



Today we participated in the National Alliance of Mental Illness Walk in Sacramento for the 2nd year in a row. We walk in honor of my husbands cousin who suffered from Bipolar disorder, as well as multiple family members who live with chronic depression and anxiety disorders.



 There is such a sigma tied to mental illness. As a society we choose to ignore those afflicted. Pretending that they don't exist. Choosing instead to hide them from the world. This is wrong. No one is exempt from mental illness. It can happen to anyone, anytime, with no warning.

As with Autism, there is no specific, clear cause of mental illness. It is believed to be a mixture of genetics and environment. Social influences like abuse, neglect, and bullying can play a role. As well as problems with neurotransmitters in the brain. 
 

Those who suffer daily from these disorders deserve respect, understanding, and they deserve to be heard. What they live with is devastating for them and for those who care for them.

They are no different than you or I. They are precious human beings with feelings, ideas, and abilities. They have a lot to contribute to this world. You just need to see them. Don't look away. Don't be ashamed of them or embarrassed for them. Look past their struggles that are no fault of their own. Just like Autism, Down Syndrome, CP, and so many other disabilities. 
This post is written in honor of our cousin Joanna and her amazing mother Lynn pictured above. She heads up her local NAMI chapter and is a wonderful support for those suffering with mental illness, as she always was for her daughter. We love you Aunt Lynn.


Tuesday, April 23, 2013

Andrew's Talent


Andrew is a boy of many talents, but his most recent is photography. He used to take pictures with our Canon, but now he has found out how easy it is to take pictures with his iPod touch. The bonus is he has it everywhere we go as it's main purpose is the use of the visual schedule app. So he takes pictures of everything he does. Literally. Everything he eats. Everywhere he goes. Everything that catches his eye. Here are the most recent pictures of our camping trip to Morro Bay.


He crops the pictures, deletes the ones he doesn't like, and creates his own albums. He made an album of our trip to IKEA recently. And it wasn't random. He put the pics in order of when they were taken. He is amazing.


I hope he continues to love taking pictures. It gives us a glimpse into his world. We get to see what catches his eye. What he finds value in. All 1628 pictues so far just in the last 2 months alone. They are more than pictures. They are memories. Communication tools. They are a window into his mind.


Temple Grandin speaks of seeing life in pictures. That if you ask her if she knows what a church looks like, she won't just imagine a typical church. She will have a picture in her brain of every single church she has ever seen. I believe Andrew is the same. He can go to a place one time, return a year later, and remember where things were located. He can remember what he did the last time he was in that place.

On one visit to his Grandparents house when he was probably only 4, he kept trying to move a picture that had been placed on the desk to a particular spot on the wall in one of the bedrooms. We then realized that is where the picture was originally hung on past visits. I would never really notice those things, but Andrew does.

He will use the pictures he has taken to request things he wants, or he will randomly show us a picture and we know that he is remembering the fun he was having when he took it. Some days he will just sit on the couch with his iPod. Sorting through the pictures he has taken in the days past. I love looking through the pictures he has taken at school and church especially. Since it is the only time I am not with him and I get to see a glimpse of what he did. 


Though Andrew is mostly non-verbal, he has found a way to show others what he is thinking. He has found a way to get his needs met. Taking pictures has been a wonderful addition to his life and we use it as a teaching tool often. It is important to recognize all forms of communication our kiddos utilize. I am grateful his school welcomes his use of the iPod and integrates it in his day. They use it as a reward, transition tool, and in recall activities.

 I am so proud of my boy and his unique mind. Every day he surprises me by what he knows. We just have to really pay attention to the things he does. Because he has the ability to see things differently. And if we really try, we can catch a glimpse of the world through his eyes.




Monday, April 22, 2013

Fears

Every parent knows that raising a child gives way to a whole host of new fears that you never had to think about before. Having to watch this new little life every single second to ensure their safety is a cumbersome task. They are into everything. Constantly learning by pouring juice all over the counter, or drawing you a pretty picture with sharpie on your white walls. They are full of curiosity and you are constantly having to harness it and use each moment as a teaching tool to prepare them for the future. A future that includes them growing up and taking care of themselves. Living on their own. Forging their own path through this world. It is a tough, tough job. But most of the time at the end you get to relish in the knowledge that you prepared them for independence. You get to celebrate with them as they embark on their own adventures.
 

But what if that light at the end of the tunnel never comes. You do all those thing to prepare them to leave the nest when they grow up. But no matter how hard to work to teach them all they need to know, they never acquire the skills to be able to live on their own. They will be with you, or be dependent on another person their whole life.
 

This is the reality for so many families with kids on the Spectrum. I just read a statistic the other day that a mere 3% of adults with Autism are able to hold down a job. That is terrifying. I look at the homeless on the street that have obvious "issues" and fear someday that could be my boy. It is one of the many fears that keeps me up at night. We as a society are so dismissive of those that are not like us. We act as though they don't exist. We ignore their humanity and treat them with pity at best. At worst, like an animal at the shelter. Undeserving of our time, help, and love. I used to be one of those people. Unaware really. Not intentional, but not educated in how to interact with someone with a neurological disability.
 

A couple months ago I wrote this...
 

James and I were at the park today and there were a couple of middle school children with Autism having recess. I was sitting on a park bench watching James climb on the play structure and one of the girls was also sitting on the structure vocally stimming and looking around. Suddenly she jumped down and walked right over to me and sat right next to me against my side. One of the aids noticed after a couple minutes and called to her and she wouldn't move and I waved to them and said "she is fine, I have a son on the spectrum as well". They were relieved and said that this girl always wants to sit right next to people and she hums constantly and people don't know what to do with it. They were so relieved that I was aware of Autism. I was happy that she picked me of all the people to sit next to so at least today she could be accepted for who she is and not judged and made fun of for not being "normal". Today, as many days, I was proud that my son has taught me to be understanding, empathetic, and accepting of others. Before him, I would have been one of those people to get off the bench because of their discomfort....rejecting a sweet little girl who just wants to be who she is.

My son is so smart. I know he is. Others do too. I just had my first meeting with his new school and they told me how bright he is. How they only have to show him a task once, and he has it down. He loves "work". He loves to help cook. He learns new things all the time. Holding on to those skills is another story. He needs to use those skills almost daily or he looses them, which was clear when he was without a school program for 4 months. Regression happens. Often. One step forward, two steps back.
 

It is in the functional living skills where Andrew's disability is most clearly manifested. Where our worries of him ever living on his own slap us directly in the face on a daily basis. A couple weeks ago, I witnessed something that broke my heart and mentally took me down for a couple days. I woke up in the night and checked on him as I always do. I keep a sheet protector on his bed because he pees in his bed at least once a night. I went in to change him, only to find that he had had a bowel movement in his bed. He had then tried to clean himself up with his blanket, getting feces all over it. Then, having nothing to put over him in bed, he was curled up in the fetal position underneath his soiled sheet protector because it was the only thing he could cover himself with that was dry and clean on the underneath since it is waterproof. He was naked, stinky, and cold, and he didn't have the basic knowledge to come and get me so I could help him. This wasn't the first time, and it won't be the last. He doesn't know how to ask for help. He doesn't know how to meet his most basic needs. He could probably take apart a computer and put it back together, or school pretty much anyone on the in's and out's of the iPad, but what good is it if he can't understand language, or tell someone his name?
 

My biggest fear is not that he will be with us forever. I am good with that. I made peace with that likely scenario a couple years ago. I fear what comes after. When his dad and I are no longer a part of this world. I am determined to live forever. I have discussions with God about this all the time. I make deals with Him. Beg Him to take care of me so that I can take care of Drew. I take care of my body more than I ever did before to try to give myself better odds of living as long as possible for my boys. I have even said that part of me hopes that my son will pass before me. Of course with the stipulation that he is 60 and I am 85 after living a full life. As horrible as that sounds, I have talked to many mom's that feel the same way. Because the thought of leaving our special children in this unforgiving and harsh world without our protection is just more than we can bear. But truth be told, I don't know when my last day is. I could perish unexpectedly any day. It happens to the best of us. What will happen to Drew then? Hopefully James will be "normal" enough to be able to make it in this world without help when he is grown....but that is not certain yet either. Who will we leave our precious boys to? Who will have enough patience, love, and willingness to give up the life they planned to take care of them? I gave up my career dreams a long time ago. I was glad to do it. Nothing is more important to me than being everything my boys need. But how can I expect that someone else would be willing to do the same for Drew in 20 years when he is still very much like a child.

I pray for those guardians that are at this point undetermined. I pray that I won't ever need them, but that if I do, that God will pick the perfect ones for my boys. I pray for their hearts to be open to them, for their love to overflow for them, and for endless amounts of patience and strength to be given to them. Everyone fears leaving their children alone. No more so than us who have children who will never grow up.

Thursday, April 18, 2013

Fortress of Solitude




 When Andrew was younger, he has such a hard time being out in the world. All the people, sounds, chaos.....he couldn't decode all of it. So he would tantrum, and throw himself on the ground, and hit himself to drown out all of the input coming into his ears. On the days where we could do nothing to calm him, we would take him to a very special place.


Bryan found this place by accident on one of his drives to calm Andrew down. Even today that is the only way to regulate him when nothing else works. Bryan was driving in the hills outside San Jose and around one of the curves he found a side road and drove down it. There was a parking area and so he pulled over and got Andrew out of the car to explore. It was so quiet. You could hear the creek water rushing and the birds chirping. There was no one there, even though there were picnic tables and barbeque pits and it was obviously a place known to others. It was the most quiet, serene place we had found in the midst of the craziness that is the Bay Area.



We have gone back to this place time and time again. It is our fortress of solitude. Away from the daily stresses of life. The therapies, schedules, and appointments all fade away in this place. It is as if no one else exists. No weird looks, no judgements, no realities of our situation. Just the birds, fresh air, and unlimited supplies of rocks to toss in the creek.


Today I packed a picnic for the boys and we went to our special place after Andrew's speech therapy. Andrew and I sat and ate while James happily threw rock after rock into the water. Andrew used to throw rocks for hours, and James has found the same unending joy in it's simplicity. We walked along the creek taking pictures of the beauty. Talking about the flowers, trees, and birds. It was so nice to go back there. Our own little piece of paradise.
 


Tuesday, April 16, 2013

Raw



Prepare yourself. This is real, raw, and many won't agree with some of the opinions in this post and the article I am including. However, those of us that have watched our children disappear.....the 30% of kids with Autism that regress like my Andrew....we won't stop asking questions and looking for the reason why until definitive answers are given. We are told that genetics and environmental factors play a key role in a child developing Autism. What are the environmental factors? Pesticides, preservatives, artificial flavorings and colors, toxic cleaners, vaccines, medications, etc? They never say. To expect that we will just take that answer and not question what we have put into our children's bodies is absurd. Andrew will always have Autism. He will always be with us. And I love him unconditionally. I am proud of who he is. But I remember who he was. Barely. A glimpse here and there. The memories are becoming harder to pull from deep in my brain. Part of the reason is because it was so very long ago, and the other part I am sure is because it is just too painful to remember that there was a time where he was "all there". Aware, connecting, and able to learn at the usual pace. This article says it well.
 

http://thinkingmomsrevolution.com/please-dont-ask-me-how-i-feel/

Her words are raw, and I have thought them many times. Here is an excerpt.

"I want to go back to when I didn’t even know he was sick! Life was so much easier! So much simpler. I want to go back to ignorance. Or do I want to stop myself from ignoring my mommy instincts? Either way, I definitely want a DO OVER, another chance. I want our lives back. I want my Noah! GIVE ME MY SON BACK! I want HIM. I WANT HIM. I WANT NOAH PATRICK GOES! I want to squeeze him without his body going rigid. I want to hear him laugh at something that is really funny, not his brother crying. I want him to be able to tell me what he wants instead of pulling my hair in frustration. I want this baby in the picture. I want his sweet life so full of hope RESTORED"

These words are from a mother in pain. A mother living daily in the guilt of her choices. Guilt that she didn't do more, and anger that those who tell us what is safe for us and our kids don't really have a clue or a care if they are or they aren't. I know so many people out there think that we who worry that what we put in our children's bodies made them more prone to developing Autism or make their symptoms more severe are off our rocker. But it is not because we are looking for a scapegoat. It is because we have spent thousands of hours researching. Looking for ways to help our kids. To figure out where things went wrong. Desperate to find something to help our kids function because doctors are of no help. We blame no one more than ourselves for making decisions without thinking them through.

There are tons of interventions out there that people are trying to help there kids function better. Mostly because we aren't getting the help from the medical industry. I definitely don't agree with them all by any means. But I absolutely have tried many supplements and vitamins for health and sleep and some have really helped Drew. I have also gradually changed my kids diets to try to eliminate as many artificial colors, flavors, food dyes, chemicals, and pesticides as possible. Do they still have mainstream candy or soda every now and then....sure. But I can tell you that the days that Andrew has a lot of foods with those ingredients, he is less regulated, more emotional, and he always sleeps poorly that night. I have seen how diet and supplement changes can improve my son's ability to function. However he will always have Autism. That will not change.
I am not trying to cure him. I am just trying to help his body and mind out as much as possible. He works hard enough to keep things together without "environmental toxins" playing a role.
 

Bottom line. Before you judge a parent for not vaccinating, or not wanting to put medications in their child, or being super rigid about their GFCF diet, remember that most parents are not just doing it because it is the newest mainstream treatment. They aren't doing it because they are crazy. They have seen true benefit in their child's constant gut issues by going GFCF. Or their child might have had vaccine adverse reactions like 103 fever for 3 days, lethargy, glassy eyes, constant screaming, etc. That was how Andrew reacted every time he was given his 4 shots at a time (some of them combo shots). Realize that a majority of these parents taking these precautions are doing it for a reason. And they are doing it because they love their children and want to do something to help them. Yes, there are treatments out there that are dangerous and should not be done ever. I don't deny that. But that is not where a majority of these families are.
 

We get enough judgment everyday. No more so than from ourselves. We are our toughest critic. Nothing we do will ever be good enough. We will never be able to help our kid enough. We will lay awake at night wondering what we could have done different or what we can do tomorrow to make it better. We will agonize over the idea that we've missed something. This all on top of doctors, friends, family, and random strangers telling us that we are not "doing it right" even though they have no idea what we go through on a daily basis. I feel blessed that I have a great support system and don't hear these negative messages often, even from friends that might not share my views. We respectfully agree to disagree, however that is not the case for many families that I know. 

The numbers are increasing every year. We need to focus on the "why". Every possible reason. Because this is not going to go away. Even with the changes coming in the DSM-V this May, that will remove Aspergers and PDD-NOS (which is what my youngest is diagnosed with), I guarantee that these kids and adults are not going to go away. Their needs won't go away. Their parents won't go away. We will be heard. We will keep fighting for answers and for help for our kids. We won't let them fall through the cracks. We won't be ignored. We will share what has helped our kids make gains even if it is not recognized by the medical industry. Most importantly, we will fight to save others from having to walk down our path.

Monday, April 15, 2013

Rough Day

Reading through James's diagnosis report from the Autism Spectrum Disorder clinic I just received. 2 months ago I didn't understand why I felt God pushing me to have James assessed for Autism. I was so sure he wasn't on the Spectrum, as I thought I was an expert because of Andrew being diagnosed 6 years earlier. Well, I was wrong. And I see now why God was pushing me then through the subtle comments of various therapists and his pediatrician. In the last few days James's echolalia has grown exponentially. I am so grateful that he is finally talking after all the speech therapy for the last 7 months, but as Echolalia is Andrew's primary way of communicating, it is very hard to see this manifest itself so strongly in James. He also has the same difficulty as Andrew with understanding speech and being able to follow simple directions due most likely to an auditory processing issue.

It is so different this time around. I started getting James assessed at 16 months. He didn't show enough delays to need any services at that point and I was so relieved. Then at 22 months he hadn't made progress and qualified for services as the gap between he and his peers had widened. However there was no concern from anyone that he was on the Spectrum. Fast forward to February when I took him to the ASD clinic and it was painfully obvious that his struggles qualified him for a diagnosis.

I am starting to fear what is coming next. Andrew regressed so quickly that there was nowhere for him to go but up after he was diagnosed as he had lost all skills pretty much overnight. Every month that passes, James is changing. The older he gets.....the more obvious it is that he is falling further from the learning curve most children follow. I don't know how to deal with this. He was 50% delayed. Then 61%, and now 70% in some of his necessary skills. I am worried. I don't know how to not be. I have tried so hard from the moment we decided to have him to give him a different outcome than Andrew has had. I tried to do all the right things, meticulous things that most people wouldn't think would be important starting even before conception. And I started testing him early to be sure to catch any issue as early as possible. I was always talking to him. Feeding him language. Engaging constantly. Working on skills before he was even developmentally ready to tackle them.


 I know I have no control over this and that should give me solace. But as a mom I want to spare him from this struggle and I thought with all the research I did and the things I did different the second time around, I could stop it from happening. I hurt for him, I hurt for me. I hurt for my husband who has struggled with his faith because of this process. 

I guess I still have some learning and growing to do. Again the Lord reminds me I am not in control. I don't hold the reigns of James's life.

Saturday, April 13, 2013

An Unexpected Revelation

Before James was even conceived my husband and I were so terrified to even consider having another child. Our firstborn son was 5 years old with severe Autism, and we had so many concerns about what having another child would do to him, to our marriage, or if we could handle the possibility that we could have a second child with Autism. I had a million questions, a million reasons not to take the leap. And I was still dealing with the guilt that I had somehow caused our son's regression into Autism. That I had eaten too much tuna, or drank too much diet soda, or that the dental work I had to have done in my second trimester somehow damaged him and set his fate.

So when the day finally came that I felt I had healed enough to take the leap and add to our family, it surprised no one more than me. I never thought I would get there, but it is amazing what therapy and a group of supportive people can do for your heart and soul.

I decided that if we were going to do this that I was going to do everything "right". Which meant everything opposite of what I did the first time around. I was going to eat as clean as possible. No artificial anything, organic as much as possible, DHA and multivitamins religiously, etc. Exercise, no unnecessary procedures, I even had my mercury fillings removed before trying to conceive. That also meant a drug free birth, no medications for myself or the baby, and breastfeeding from the moment he left the womb. Cloth diapering, limited exposure to hazardous chemicals, and anything else I could think of that would be completely opposite from what our son endured. I am sure I went overboard, but in my mind I was going to give this baby the best chance to have a "normal" life as I could. Obviously the guilt had not completely left my mind.

James was conceived within 2 months of trying and after a healthy pregnancy and drug free birth he came into the world exactly as I had planned so meticulously. I am grateful for that, though I know ultimately it was in God's hands that all went well and I am just blessed that their were no complications.

He is now a couple months shy of turning 3 and though we thought for a long time that he was developing typically, he was diagnosed with an Autism Spectrum disorder last month. Specifically PDD-NOS. He had 5 out of 6 of the markers necessary for a full Autism diagnosis. It just took longer for the signs to reveal themselves than with our first born because Andrew had a full regression. However, he is much higher functioning this his brother. In fact, he has already surpassed Andrew in his ability to understand and use language even though he is 6 years younger than him and delayed himself. Soon, he will become the big brother in this scenario. It is a realization that I hadn't really considered on this journey.
 

They say you shouldn't compare your kids. But that is pretty much impossible when your first child has special needs. You are always looking at your subsequent children for signs that they are exhibiting the same struggles you went through with the first. All of my memories of Drew at this age come flooding into my mind. The pain of seeing what was stolen from him when he regressed at around 18 months. Seeing James point at things to communicate which Drew still cannot do at 8 years old. Watching James seek out other children to interact with. Seeing that he can follow simple directions and has a comprehension of language that Drew still doesn't have now. The pain cuts so deep in my soul.

Our home used to be the place we could run for safety. Away from the judging eyes of the world that can be cruel and heartless. Home was where we could, if just for a while, forget that Drew struggles with Autism so much and is so far behind his peers. We could just enjoy him for who he was and relish in all his amazing qualities that I would never trade for a moment. Autism has given him so many things that I love about him. He is so very loving and affectionate. He gives the best hugs and kisses and longs only to be with his Dad and I...playing and flapping and enjoying our little world.

I never fathomed the fact that now with James in our life, we would no longer have this world to escape to. Away from the children that were so much younger and so much more developed than him. Gone are the days of leaving a park for the solace of home....crying because a 2 year old came up to my 8 year old and asked to play with him and he could not respond because he is non-verbal. Going home and just hugging my child and willing myself to forget the pain of what has been robbed from him. Now, there is a precious little boy in our world that is going to be one of those kids. Asking why Drew doesn't talk to him, or play with him, or why he flaps and stims and seems as though he doesn't see him at all.
 

I wonder how much Drew understands. Does it hurt him to see that his little brother can do things he just can't do? Does he feel that pain and wish for the days that he could just be at home with us and forget that he isn't like other kids. Some of his more recent behaviors in the last year seem to show that he does indeed know that he is different and that clarity just breaks my heart for him. He will just start hitting himself and crying out of the blue and the look of pain on his face tells me that he feels the frustration that his brain is not allowing him to say what he wants to say. This is one of the reasons we pulled him out of public school. He seemed to go through times of depression and despair, with no ability to express his feeling in an appropriate way. Now, with his brother's speech exploding (even though much of it is echolalia) there is just nowhere for him to hide.
 

This is a heartbreak that I wasn't ready for on this journey. And it is only the beginning. I just hope that I can deal with it in the best way possible. Parenting two children that are so different in every way is such a difficult thing....for all parents I am sure. Finding the balance and meeting the needs of both kids in the best way I know how is going to be a learning process. I am grateful that I have some amazing friends that have gone before me in this journey. Theirs will be the shoulders I can lean on and their wisdom will help carry my through the process.

Friday, April 12, 2013

My Prayer


This is an old journal entry about our youngest son James. I wrote it before his delays became known. Before the assessments, the fight for Speech and OT services, and the realization that he too was on the spectrum. And even though it seems at first glance that God didn't answer our prayers because we still ended up with 2 kids with special needs, He did indeed answer my desperate, prayerful request in this post. James is still looking at us and seeking us out for attention, approval, and love. He was a late talker but has not stopped trying since he learned how. He is always laughing and smiling, and is the sweetest boy we could have ever hoped for (besides Drew of course). And he loves his brother greatly....always trying to engage him and play with him whenever Andrew will let him in his world. God, in all His grace and goodness did give me the desires of my heart. Here is a look into our past:

My sweet baby James....you are 5 months old now. It seems like just yesterday we were a family of 3, unsure of our future. Scared of the possibilities. Deciding to have another child was the most difficult decision we had ever had to make. But one day back in August of 2009, God spoke to me in His still small voice and told me to trust Him with our future. Relinquish control and let Him do His will in our lives. We began praying for you that very day. Praying for God to bless us with another child to love. A child who would grow to love his big brother unconditionally and be the perfect companion to him. Praying for God to remove our fears and replace them with hope. Praying for a chance to heal and begin a new chapter in our lives.

Now here we are. Still in awe of what transpired so very quickly. Amazed at how perfect you are. Enjoying every new milestone you have. Smiling, cooing, laughing, rolling over, and sitting. You are so very social and aware. You make the best facial expressions. You are always seeking us out.....desperate for all of the attention we can give you. It is the most amazing experience and we are so thankful for it.

And yet in the back of our minds lingers our one fear. Our memory of the past. We have been here before. With Drew. He was also considered to be a typically developing little boy. Hitting all of his milestones....getting a perfect bill of health from every doctor visit. He did all the things you are doing. And he crawled, walked, and even talked on schedule. Then it all stopped. Our perfectly developing little boy, who may not have been as social and animated as you but still "normal" went away. We can see it in the pictures and videos we took. The lights went out in his eyes. No more looking, laughing, talking. He retreated into his own world and we are just now beginning to pull him out of it.

Our prayer for you James is this. Don't ever stop looking at us, or seeking us out for attention, approval, and love. Don't ever stop talking, smiling, and laughing. God, please protect James. Help him to grow and thrive. To be healthy. To love You. And especially to love his brother and be his biggest supporter. And Lord, keep our focus on you. Keep our minds positive. Help us to know that You are in control and that worry and fear have no place in our lives.

And finally, please help Drew to form a special bond with James. To seek him out for attention. To want to play with him. To form a friendship that will last a lifetime. Let James teach Drew how to love others, and how to seek out friendships with other children. And let James learn empathy, compassion, patience, and courage....as only you can from having a sibling with special needs. To know that we love him just as much as Drew, even if sometimes Drew demands more attention.

So many prayers we have for our children and for the future. Thank you Lord for this opportunity to live the life you had always intended for us....bumpy and scary as it may be sometimes. It has drawn us closer to You and to each other.

Thursday, April 11, 2013

Sleep


In preparation for finally having a blog, I started searching through my old writings to try to figure out where to start. I came across endless journal entries and Facebook statuses about the severe lack of sleep I was suffering from. As many people with kids on the spectrum know all too well, sleep troubles often go hand in hand with Autism. The sheer torture that my son put me through every single night.....let's just say I don't know how either of us survived it.

From the age of about 3 months, Andrew would sleep about an hour or two at the beginning of the night. Then as soon as I was ready to go to sleep, he would wake up, and thus would begin the never ending cycle of him sleeping 20 minute intervals until the morning came. I came to dread bedtime every night because I knew that I would not be sleeping. That the nights would go on and on, and seem to last longer than the day. Andrew wouldn't cry or fuss much really...he just wouldn't sleep. I would lay on the floor in his room and doze in and out of consciousness as he would lay in his crib, or swing, or car seat....not looking the least bit tired. This would be after 2 very short naps during the day, which by the time he was 9 months would only last 20 minutes each.

Andrew did not sleep through the night for the first time until he was about 5.5 years old. You can imagine how terrifying that was for me. Waking in the morning in my own bed with the light coming through the curtains. Running in his room thinking the worst. That he fell out of his loft bed on his head, or escaped out the front door in the night, or was overtaken by carbon monoxide poisoning while we slept soundly. You know, normal thoughts of a mom who has had sleep disruption years on end. But no, there he was in his bed. Looking at me through sleepy eyes like I was insane for bursting through his door like the house was on fire. The success however was short lived.
 

After that, I would be ecstatic if he slept through the night 2 days a week. One was more the norm. And now, three years later, Andrew will sleep through the night on average 3 days a week....4 if the stars align and everything syncs just right in his body and mind to allow him to sleep. I wake up every night at what my husband and I lovingly call "the witching hour". 2AM. My son has trained me well. If he wakes at 2 am he will stay awake until between 5 and 6am. You can imagine this bodes very well for him having to get up for school. The best nights (besides the nights he sleeps through), are the nights that he wakes between 4 and 5am. He is rested enough he won't go back to sleep before he has to get up at 7 for school. Which means I won't have a grump on my hands.
 

The one saving grace we have after years and years of Andrew not sleeping, is that I always forced him to stay in bed until it was time to get up...even if he was awake for hours in his crib/bed. I or my husband slept in his room on the floor for years (literally) just to be sure that he stayed in his bed until the light began to creep through the blackout curtains. So now when he wakes whether it is 2am or 5am, I can give him his iPod touch and go back to bed and catch a few more hours of sleep knowing that he will stay safely in his bed playing until my alarm goes off. I have never and will never take my tempurpedic bed for granted. I cherish every moment of rest I get on that lovely cloud of comfort.
 

People are always asking me how I do it. Well, after years and years of dealing with this issue, my body has learned to adapt pretty well. My mind however can be a different story. I have gone through such extreme times of sleep deprivation that I have run red lights, had trouble remembering how I got from point A to point B, and looked forever for my keys only to find they were in my hand the whole time. I have been an angry, short tempered mess more times than I would like to admit. But every year Andrew's sleep improves little by little. This last year my husband and I have been able to sleep in our own room at the same time...which was a rare thing over the last 7 years prior.
 

I am so thankful that our younger son James does not seem to have the same sleep issues that Andrew does. I thought he did at first, but now he is sleeping through the night or waking once or twice only to quickly fall back asleep again.Which is a good thing since we have to share our room with James until we live in a 3 bedroom place. And lets face it. Living in the most expensive area of California on only one income doesn't make affording that 3 bedroom very likely. Not with all the therapies and other necessities we families with kids with special needs have to budget for. But that is another story for another day.

Wednesday, April 10, 2013

Finally Taking The Leap

After numerous requests from friends and family members in my life, I am finally starting my own blog. I decided to call it Bugaboo's Treasures. Bugaboo is the nickname we have called our eldest son for as long as I can remember. I don't know how it began, but it has stuck all these years. He is 8 years old and is severe on the Autism Spectrum. He is now joined by our youngest son who was just diagnosed as well at the age of 2.5. Autism is indeed a spectrum, no more so than in our home where we have a child on each end of it.
 

The "treasures" part of this blog will be the daily tidbits of our lives. A window into the the real life pain, struggles, accomplishments, and joy that we experience on a daily basis. I may not post daily. Who am I kidding....of course I won't. With 2 kids on the spectrum how would I have the time. But I have always wanted to help others in this journey, especially those at the beginning, where the questions are the most persistent, the wounds are the freshest, and the need to find anyone who might understand what they are going through is of the utmost importance.

I felt so very alone when we started this journey almost 7 years ago. It wasn't as much of an epidemic then as it is today. Nor was there as much awareness of Autism and the families struggling with it. I didn't know where to turn, and there were few books from a parents perspective to gain knowledge of what our future might look like. Now there are many bloggers out there who share their stories every day and I am happy to join the ranks. I hope that through this blog I can connect with others who have their own unique story, as well as give some insight to those who want to peek into the window of a family living with Autism.