Happiness

Happiness comes in many forms, sometimes is hard to see Happiness means love, success and sometimes feeling free Happiness can be a smile from a stranger on the road Happiness can be a helping hand just when you are carrying a heavy load Happiness is what I feel each time I see my boys Happiness is the way they smile when they sit down and play with their toys Happiness is knowing I have done everything I can each and every day to show my boys how much I love them in many different ways Happiness is what you make it, small or large in size Happiness is about unconditional love, not so much about being wise Happiness is a warm smile or hug from my husband for no reason at all Happiness is knowing he is there to support me and catch me when I fall Happiness is a choice; the choice is up to you

You just never know when...........

You just never know when something you share will impact another person. It is quite interesting how life works and how when you least expect it, you can make an impact on someone's life or on many lives with just a few words. This post stems from a conversation I had this afternoon. I decided to share my blog site with an acquaintance of mine. I don't say friend, only because we never really knew each other as kids, just knew of one another yet as adults we have met and been able to connect and influence one another's lives. After reading last night's post Turn that frown upside down...and away we go she sent me a note saying that a family member of hers had their 3 year old in early intervention services because "he's almost 3 and isn't really talking yet, which frustrates him that he can’t' communicate so now he acts out a lot, hitting and tantrums, the works". She went onto say that she would likely share my blog with the loved one's in hopes of helping them realize that without a more focused effort to help her kid, counseling can only do so much. She wants to help this family member and thinks that maybe, just maybe reading my story will show them that the effort they put into their child now will make a difference later on in his life. Smiling inside and out as I read her note and feeling a bit of self accomplishment, because this is why I blog about our journey. It is partially to help me through the process, but more so to help others see that they are not alone, that it happens to many of us and for those that aren't afraid to jump in head first and "sink or swim" with their kids, the benefits well outweigh the low points. I went on to tell her that it is amazing what a difference it makes when all parties are on the same page. I let her know that if the child's parents, teachers, specialist and family members are not on the same page, the child will not reap the true rewards of early intervention. I also stated that if the parent's are not willing to put in the time and effort on the back end it is NOT going to be worth any of the money they put in on the front end to have their child meet with the counselor and/or other specialists. In no way am I the expert on what to do or not do, yet I can comfortably and confidently make the above statements because I know firsthand what it is like to deny and then embrace this journey. I also have friends who just sent their kids for OT, Speech, ABA etc but did nothing at home to keep things consistent for their child. When they couldn’t figure out why nothing was moving along in the form of bettering some of the behaviors, in the kindest way possible, I told them to look in the mirror. It may sound harsh, but the reality of it is this: If you have a child with any sort of special needs/delay, their situation will only improve if you are willing to put in as much time and effort as they are to make it happen. It is not a one sided heads up coin; it is a two sided coin with lots up heads and even more tails. The conversation continued via messenger. Moving on to asking how differently the child acted at home vs. in school and if this child had ever been evaluated for ABA services. They didn't think the child had any ABA services thus far. She knew that he went to preschool and that his behavior seemed to be ok while at school. While things seemed to be going ok at school, it was falling apart on the home front. My response to that follows: In my experience and from working with numerous experts; It is not uncommon for more of the behaviors to come out at home vs. in school. Many times kids are "on" while at school and once in the comfort of their home, many of the behaviors come out in full force - sometimes it is due to behavior, speech or social delays and other times just a kid looking for some sort of attention. I let her know that I don’t know her loved one's situation well enough to even venture a guess as to what the triggers are for his behavior, but consistency both inside and outside of the house does affect a child's behavior. Many other factors influence behavior, but inconsistent messages from parents and caregivers can definitely cause issues. As for ABA - I recommended they get him assessed by their local regional/early start center - it is a free assessment and if he needs services they can figure out who and what is best. I also said that their pediatrician should be able to lead them in the right direction. Tonight's blog was written because I imagine that there are many other parents out there with no answers, nowhere to turn and completely frustrated by their child and their situation. I only hope that other's read this post, and if they find themselves feeling this way, find it within themselves to ask for help. It may be the hardest thing they ever do, but I am quite confident that they won't regret it.

Turn that frown upside down...and away we go

Friday was a roller coaster of emotions. My oldest went from happy to sad to anxious and back to happy again for hours and hours. Not knowing which emotion would come next, I "tiptoed" around him while trying my best to stay strong, stern and consistent in my message that the behavior he was displaying was not acceptable. No matter what I did, he was not cooperating, nor self regulating enough to calmly discuss what he was feeling inside. After heading to our basement to read book on his own, I decided to once again try and talk to him about why he was having such "a day". I was pleasantly surprised to see him smiling and asking me to watch his "show". He politely asked me to sit on the alphabet carpet; specifically the letter A and watch his Winnie the Pooh collection show. As he danced to the music and turned the pages of the book, I watched and thought about what was going on in that little mind of his at that very moment in time. The show lasted about 15 minutes and so did the smile. As soon as it was over, he once again began a meltdown; yet this time nothing I did or said seemed to help it. Finally I chose to walk upstairs and give him some space. Sometimes that is the only way to get him to self regulate - give him some time to figure it out on his own and he will eventually calm himself down. Well not this time. Less than 5 minutes after I left him downstairs, I hear him run up the stairs, into his room and slam the door. By this time, I am really at a loss because this is something that I have not seen or heard from him in months. This is the old kid, not the one who has worked so hard over the last 3 years to understand his little brain and body and figure out how everything within both areas work together. I decided to give him a few minutes before heading upstairs and into his room. When I finally opened the door to his room, I found him sitting on his window ledge, looking like he had just lost his favorite stuffed dog and looking at a photo album given to him by his teachers at OPNS, his last preschool. He was singing when somebody loves me(from the scene in Toy Story 2 when Jessie is looking out the window reminiscing about her time with the little girl who loved her before giving her away) I slowly walked over to where he was sitting, knelt down beside him and said baby what's wrong; why do you look so sad. He looked up at me and said, mommy I really miss my friends and my teachers. None of them came with me to Maryland and I'm sad. Tears welled up in my eyes as I reassured him that it was ok to feel scared and anxious about starting a new school and reminded him that he didn't know anyone when we went to OPNS in the summer of 2011. For the next few minutes we sat next to each other, as he asked me questions about where each picture was taken. Slowly but surely, the anxiety left his face and his frown turned upside down. He told me he felt better and asked me for a snack. While the events leading up to our little “heart to heart” saddened me and brought a frown to my face, the ability for him to communicate his feelings, understand that everything is going to be ok and move forward by not letting it ruin his whole day brought a huge smile to my face. It made me realize that although these “episodes” are still a part of who he is, they no longer define him. He has the tools he needs to make it through any situation, we just need to be patient, support him and keep things consistent for him. We need to continue throwing obstacles his way, in a safe environment, so that he can continue to grow and learn new ways to deal with whatever it is life throws his way. Kindergarten began today and although Friday was filled with meltdowns and anxiety, today was a great day. We walked to school with a group of other kids and parents; some with their little boy or girl just beginning Elementary school and others in older grades. Regardless of their age, we all walked up the hill and across the street to the school. It was great to have so many neighbors going to school with us. I believe it helped keep our son focused and excited about starting school. As we approached the front door of the school, my oldest took off running with some of the other kids. With my 2 year old at my hip, we ran after him, around the corner and into the school cafeteria. He ran over to the teacher and sat down on his bench. Looking around, he realized that kids at the next table were coloring. Very politely, he said, excuse me and asked, am I going to get some paper to color? The teacher looked at him, smiled and said, in a minute. Instead of getting anxious and melting down, he said ok. He sat patiently as she talked to one of the parents and then handed him some paper so that he could color with his new friends. It was at that moment that I knew he was in good hands and in a good place within himself. I scooped up my little one, gave my big boy a high five and told him to have a great day. I would see him after school. Throughout the day my mind often wandered off, wondering what he was doing on his first day of Elementary school. When the end of the school day came I walked up the hill, across the street and over to the school with some of the mom’s from our neighborhood. After waiting about 10 minutes, one of the teachers walked out with my big guy. She told me that he said he was supposed to get on on the bus. I smiled and said, no, he is mistaken. He was adamant about it though and it took me a few minutes to calm him down and explain that we walked home with our neighbors just as we walked to school with them. Thinking that he was likely hungry, I offered him a snack and continued with my explanation as to why he didn’t take the bus. For a few moments, we stood looking at the buses and talking about how some kids rode and some kids walked. With food in his belly, he was able to calm himself down before going into anxiety overload. What a satisfying thing to see. The teacher went on to tell me that other than J getting in line for a school lunch instead of sitting down with those who brought one, his day went very well. In his case, he may think he hit the jackpot – 2 lunches, so much to choose from – what a treat. As I sit here now, typing away, I continue to be empowered by my oldest. His determination to fit in, to find his way in this world and to just be the best he can be, makes me strive every day to be a better me. I think back on all of the hours of hard work, tears, meetings and phone calls and am certain that none of it was wasted time. I think about all of those who have touched our lives; guiding us through this journey; like training wheels on a bicycle. You all know who you are and I thank each and every one of you for helping us get to where we are today. I have said it before and I will say it again, It takes a village and in our case it took an army to get here. As this new journey begins, we once again surround ourselves with more educators and specialists that have the ability to guide us down this ever changing road. I am hopeful and optimistic that the journey toward greatness will continue to unfold before our eyes. I will continue to be my children’s biggest advocate because if I don’t who will? Until Next time………………

Baby Steps To Success

Through the eyes of my children I have learned that the best way to get through a day, a week, a month or sometimes even a minute is by taking "baby steps". Yesterday was one of the best and toughest days I have ever gone through. As I quickly approach 40, I realize just how much I have learned from my mistakes, from the mistakes of those around me and from the courage and curiosity of my two amazing little boys. I have also learned so much from the courage of my husband. So many people say to me, " you and your husband have been through more in 5 years than most couples go through in a lifetime" That may be true, but each thing that life throws our way makes us a stronger and better as a couple, parents and friends. The inspiration behind tonight's post is my amazing 5.5 year old. 3 years ago, when we began our journey to find out what was causing all of our sons behaviors, sensory delays, transitional delays, social/emotional delays and speech delays; I never thought yesterday would have been possible. Yesterday was Kindergarten testing for my big guy and he hit a home run, scoring 100% on reading and comprehension, 97% on site words and 94% on letter recognition and proper sounds of each letter. If you don't know me or my family, I can hear the comments now, "Geeze, these parents are perfectionists, this poor child is being pushed too hard, why is it that important to blog about this when he is only in kindergarten". If this were any typical child I would agree with those skeptics, but this is no typical child and this is no typical situation. Our son loves to learn. He is so intrigued by what words mean, how to pronounce words and just above life in general. Our son didn't speak until he was almost 3. At age 2.5, the teachers couldn't figure out why he was having meltdowns whenever asked to transition from one task to another. At age 4 his pre-school teacher required us to obtain an aid (with our own money) in order for him to stay in her classroom; stating that he had too many issues to handle and that I needed to get him more help than she could offer. Although I didn't agree with her decision; looking back; I am so grateful that she was unable to stand up to the challenge of my child, because the behavioral aid that was referred to us did wonders for our son. He gave him all of the tools necessary to grow socially and emotionally; taught him ways to process faster, to filter out the unnecessary things around him so that he could focus without going into sensory overload and laid the foundation for all of the coping skills he now uses to be able to self regulate in stressful, anxious or unfamiliar situations. Without this foundation, yesterday would have been impossible. At age 4.5 he was given an IEP and an ABA rep and the progress continued. The foundation that had now settled in his little mind, gave way to a whole new world, a whole new attitude and a brand new start for our guy. The teachers at his last preschool and at ABA services NEVER once looked at him as though he was different; instead they took the challenges and turned them into to opportunities to teach him additional coping skills. They set him up for "small failures in a safe environment" Allowing him to figure out how to work himself through tough situations, transition with the rest of the class without melting down for an hour because he was still thinking about and processing what had happened hours earlier and just figure out who he was and become comfortable in his own skin. Not only did they accomplish all of this; they exceeded every single expectation that my husband and I every imagined, prayed and wished for our big guy. The kid that walked into the elementary school yesterday could never have come to exist without the army of people who surrounded us over the last 3 years. When his new Kindergarten teacher asked him if he was nervous about starting Kindergarten in a few weeks, he said he was not nervous, just excited. The teacher came out of the testing room, sat down with me to go over the reports and brought tears to my eyes as she told me how he not only answered her questions regarding the stories he had read to and with her; he was able to summarize what was said in minutes. This brought tears to my eyes because less than 1.5 years ago, that would have taken hours if not days to take place. His processing abilities were so delayed that they would trigger frustrations and meltdowns. Yesterday all the delay did was trigger him to look off for a few moments at a time, in deep thought, as he processed and recapped what he had heard/read just minutes before in the story. Tears of joy and a sense of accomplishment were alive in me at that moment. The teacher went on to ask me what his IEP diagnosis was and responded with, wow, I would never have known. She said she did see some of the processing delay, fixation on topics and a little bit of rigidity, but the way he had learned to cope with it was magnificent. Finally, she smiled and said, whatever you did and whoever helped you did a fantastic job preparing him for Elementary school. Don't worry, he is so ready for school. I hope this post inspires others to let down their pride and do what is best for their child's well being. I also hope that it shows the struggles and successes that it takes to get to where we are today. It is not an easy road, definitely a road less traveled, but a road worth traveling, none the less.

Change - will you embrace it or fight it?

I realized it has been 3 months since my last post. I didn't think it had been that long since the last time I sat down to type out my thoughts. So much has happened in the last few months. The one thing that continues to go well is my oldest's ability to go with the flow, embrace change and deal with what life continues to throw his way. 2 years ago my oldest needed at least an hour of "priming" before going anywhere and if he didn't get the days "preview or change of events as they were going to unfold" his tantrums would be so bad that we couldn't leave the house. Today we have a child who may "meltdown" for 15-20 minutes max when things don't go his way or he doesn't know what is happening next. While his "tantrums" may still be much more intense than a typical 5.5 year old, they are quite manageable and that is the best we could have hoped for when it comes to a child with ASD. I couldn't be more proud of my boys. My youngest learns and grows everyday by watching his big brother. Instead of worrying about what mood my oldest will be in and how many red choices he will make in one day (those are bad choices)I sit back and watch him help his brother; watch what we do with him and try to use some of the words we use to teach the little one right from wrong. He's making up for lost time when it comes to being a kid. What do I mean? Well we spent years 2-5 in early intervention services; much of it paid for out of pocket. Surrounding ourselves with an army of experts, we were able to give our oldest the tools to process faster, deal with change, understand how to be flexible and learn how to properly interact in a social setting. Not only was he able to learn all of this and be able to put it into practice; his little brother was able to benefit from the early intervention (ABA) services provided to our oldest. Since Sharing and Flexibility are big parts of helping a child with ASD it was great to have his little brother there to help him figure out how to work through some of these programs. Without all of this help, I am certain we would not be where we are today. Over the last 6 weeks, we have moved our kids cross country, had our nanny of 3 years go back to CA with less than a weeks notice and had a new sitter start with us. Luckily, will all of this change, we had Babushka and Uncle George here to cushion things quite a bit. In the last 3 weeks, on at least 2 occasions, my oldest has thanked me for bringing him back to MD. He said mom, "I am really happy with you" When I asked him why, he said because you brought me back to MD. I really like it here. He had a grin from ear to ear on each occasion. Any question I had about moving this amazing kid cross country again in less than 4 years was wiped away by that comment. I titled this blog post, Change - will you embrace it or fight it, because I truly believe change is a choice. Everyone has the ability to change, the choice is yours, the decision you make today will affect your life and the lives around you tomorrow. I know this to be true on so many levels. I choose unconditional love for my boys when it is not the way I was brought up; I choose to continue asking for guidance and support when I don't know how to help my boys; instead of being too proud, I let down my pride and know that my kids will truly benefit in the end from my vulnerability. I am confident that teaching kids right from wrong, supporting their decisions/thoughts/feelings (even if you may not agree with them) setting boundaries, offering unconditional love and to how fight for what they believe is right; will help mold my boys into well rounded, successful and happy adults. Any time I want to give up; feel like the things I have changed in my life to better my chances of my happiness and that of my boys were not worth it; I look at their faces, smile and know that CHANGE is good, CHANGE is inevitable and CHANGE = GROWTH

Response to questions regarding the "Our Bath Time Journey Post"

A friend of mine responded to my Our Bath Time Journey post with several questions. This led me to the idea of answering them in a blog, so that anyone else thinking the same thing will be able to read about it. Here Goes: “So, just read your blog... I had no idea bath time was that much of a struggle for you and J early on... I was wondering, how was he when you got caught in the rain? Or if he ever stepped in a puddle of water by mistake? Or even if he spilled something on his clothes? Was he ok with these situations or were they tough for him also? “ To her questions above I replied: the answer to all of the below is yes - he had issues with rain, puddles, getting wet, getting dirty, anything on his clothes etc. No one really knows all we went through (other than the psychologist and behaviorist.) It has been a long and draining process. He has come such a long way, but we still are working through some things. To expand my answers to her questions: What would he do if he was caught in the rain: As with many things, it would depend on how he was feeling that day. Sensory issues are a strange thing to those of us that don’t have them. Some days the rain scared him, other days he would scream “I am getting wet or I am wet; dry me off” and then there were days that although he didn’t like the rain, he could tolerate it without sensory overload. All in all, the actual rain was not that big of an issue over the years. If he ever stepped in a puddle: This one is a little more complex. Since he has sensory issues, getting him into certain types of shoes was a battle in itself, let alone into rain boots so that he could enjoy puddles like the rest of the little kids his age. At first, we avoided puddles like the plaque. When he would accidentally step in one, he would definitely “freak out”, wanting his shoes and socks to be changed and not wanting to be wet at all. At a certain point we were able to get this under control enough to get him into rain boots and out into small puddles; yet when his pants got wet while playing in the water he was not able to deal with them being wet and we had to cease play immediately, go inside and get changed. I still recall the first day he actually enjoyed jumping in the puddles. We actually took pictures. I would have let him play for hours if he wanted to because it was such a HUGE step toward normalcy for him. If he spilled something on his clothes: He would meltdown; insist that his clothes be changed immediately. I would bring at least 2 changes of clothes with me no matter where I went; just in case some part of his clothing got wet. It didn’t matter if it was the rain, spilled water or food; he needed to get out of those clothes as soon as possible. It was almost as though his clothes were on fire. This was definitely something that lasted for a long time. Little by little as his sensory issues got under control, he was able to get wet without an issue. Today, I no longer have to bring changes of clothes and he no longer gets hysterical when his clothes get wet. Not only is he ok with puddles and his clothes getting wet, he goes out of his way to jump in them from time to time. Telling me now, “mom, it’s ok to get wet and dirty; that’s what kids do mommy”. I remember crying tears of joy when I heard those words coming from his little mouth. Please let me know if you enjoyed this Q and A post. If so, I would be happy to answer any questions you may have for me, related or unrelated to the Posts I have written.

Our Bath Time Journey

Reliving the last 3 years of bath time may not seem like a topic to blog about, yet in my case it could take up an entire chapter of a book. Since this is not a book, I will keep it as short as I can while taking you through our bath time journey; one that went from what felt like torture to finally come to enjoyment. Yes, it took almost 3 years to get there, but we got there. The journey that began with tears and fears has led to smiles and pure joy. When my oldest was less than 2 years old, giving him a bath was utter hell! The entire process took well over an hour. Many nights it took 15-30 minutes just to get him inside the bathroom let alone into the tub. Yes, I tried everything; even seeking outside guidance but until his little brain and body was ready to embrace bath time all we could do was work on giving him the tools to help him get there. You may be thinking to yourselves; this is nuts; she must have just not known what to do with him; how can you let your child control bath time like that……….and the comments go on and on. I am about to take you through my journey toward bath time enjoyment. My earliest memories of my oldest in the “big boy” bath consisted of him screaming bloody murder, grabbing onto the sides of the door frame with all his might, me fighting back tears that many times came streaming down my face and then once we finally got into the tub, he would do everything in his power to get out. He would scream, try to hit, scratch etc. and try to crawl over the tub. It didn’t matter what we did…a little water, a lot of water, bath toys, and bubbles….he still wanted out. After months of barely getting him into the tub he finally became comfortable enough to stand in the tub, just long enough for me to wash his hair and body off without screaming. As long as he was in and out in less than 1 minute we were ok. A few months after that I decided to see how he would react if I had him take a shower with me or my husband. What I found was that he seemed to really have fun in the shower with mom or dad. As long as the water was running down his little body from above he seemed quite content. So for the next 9 months our little guy showered with mom or dad. He was able to play in the shower with some water toys, paint on the walls, wash his body and his hair and go in and out with a smile on his face. Sometimes he would just keep saying more, more because he liked it so much. This was a far cry from how we started out with bath time. Trying to get him back in the tub was another story. After 2 summers of swim lessons; and at age 4 we decided to try the tub again. He seemed to have conquered his true fear of the water so we thought it was a good time to try again. While he was no longer grabbing the door frames and screaming bloody murder, he was still in no way, shape or form, enjoying his time in the tub like I remembered as a child. I would have to be dragged out of the tub at his age. Put me in there with some bubbles, crayons and water toys and I could play for hours. My youngest screams when we take him out of the bath because he just wants to stay in and play with his toys, splash and goof around with big brother. Not the oldest. This little guy did not feel that way about bath time at all. We eventually found a way to get him comfortable sitting in 2 inches of water for at least 5 minutes to get a good bath and even a moment or two of fun. We tried more water toys, paints etc and although he was tolerating what was going on, he could still do without it. Then one day, around 4.5, little by little he began to enjoy the tub more and more. I am not sure if it was because he saw his little brother getting bathed; sitting in an inch of water, splashing and laughing as we gave him a bath or if something inside him just calmed down enough to be ok with being in the water. Whatever the case; maybe swim lessons helped him realize that the water was his friend and not his enemy. He was like a fish in the pool and seemed to be at complete peace, in his element and completely relaxed. Unlike the anxiety filled episodes that took place for the last few years in that small little bathtub. Finally, his anxiety started to ease in the tub and mom and dad were able to get him a bath without wondering what sort of explosion was going to happen around it. For some reason, in his little mind, for a long time, water was really scary in that bath tub. Today, at 5 and a half we can’t get him out of the tub. He wants the water as high as he can get it; as hot as we will let him have it; as many water toys as we can fit; bubbles when they are available and even his little brother to share in the fun when he feels like company in the tub. Talk about a 180, yep that was my child. For those of you that follow my blog; after 2 years of stressful, crying nights for bath time, we realized that his sensory issues, anxiety and fear of the unknown were causing this little boy so much undue harm. As we uncovered the underlying issues, we were able to find ways to help him deal with these “disorders” and teach him how to “cope” and be comfortable in his own skin. Instead of giving up on him or ourselves; we worked with him and several professionals. All of the time and effort our family put in opened an entire new world for our son. A world filled with comfort, smiles, laughter, pure joy of life and a love of water.

What are you searching for?

If I would have given up on figuring out what we were dealing with and what sort of help we were after with J; we would be nowhere near where we are today with his progress. Would I say he is out of the woods, no, but I will say that I see a lot of great things happening for him now and for his future. We are coming up on our next IEP meeting and so the anxiety begins to take over for me because it took me a long time to get him into the system and now I feel like I have to fight to keep him in. I know that J has come a long way; we have spent many grueling hours watching and learning from many different specialists and because of it he is thriving. J has spend even more grueling hours of his own time working one on one with all of these specialists. He has put in so much hard work and I couldn’t be more proud of him. At the same time, I know that we have a lot of work to do for him to not need prompting when plans change quickly, a timer to be set when he needs to transition from a preferred to a non preferred activity, help to understand just what someone is asking him to do and the list goes on.

The typical person would listen to/watch our son and think that he is a well mannered, well spoken 5 year old that has no issues other than what a 5 year old brings with him. To a person who understands SPD, Pragmatic Language and Occupational Therapy they see the things that we know exist. I am not complaining about the fact that our son has come such a long way in just 3 years that to most people they think I am nuts to talk about what we have been through. Some people don’t believe that we have been through the journey we have and others think that based on what they observe over a day or a few hours means that they can handle our son on a day to day basis. It is truly amazing how often I feel like I have to “defend” myself to acquaintances and even friends and family; literally having to break it down to “101” type of lingo and still many are non- believers. It took me over 2 years to realize that it is going to be impossible to explain to those on the outside, just how much time, energy, focus and patience it takes to just get through each day. All of which has been worth every moment!

To those still searching for answers, don’t give up and for those that are on the verge of giving up; look deep inside and find the energy not to give up! Most go through the fear of the unknown to the denial of anything being wrong with their child, to blaming themselves, to saying it’s everyone’s fault but their own to finally either making the decision to do something about it or to act as though there is nothing wrong. Once you make the decision, go with it. It is a hard and humbling thing to admit that your child is not “perfect”, yet everyone has something going on that they can work on during sometime in their lives. For some, the issues are more severe than others. Sometimes it is a learned behavioral issue and other times there are many other factors clouding what is really going on.

With us, there were underlying causes for our son’s “behavioral” issues. Side by side with some amazing specialists we tracked progress, behaviors, trends and interactions only to come to the conclusion that there were numerous triggers causing his behaviors. In the ABA world they call it ABC’s of behavior. It doesn’t matter if you think your child’s issues stem from outside influences, inside influences or your own influence, it is never too late to ask for guidance from a professional. Any way you look at it; reaching out for help is only going to make your child happier, make you happier and allow all of you to live a happier, healthier life. Of course these are just my opinions, but keep in mind they are my opinions based on several years of actually living it.

Over the years people have told me I was seeing things that weren’t there, that he is just a kid and he acts just like the others and one even told me that I could leave him with them for a week or two and they would teach him how to act. Then those comments made me cry and now, I actually laugh out loud to myself thinking back on some of these conversations. I realize that they had no idea what they were talking about and even though each of them hurt me with their comments, I knew what I was doing was right no matter what they said. I was searching for answers and I found them. From the first time I reached out to a professional, I knew that I wasn’t making things up, but I also knew I was tired of grasping at straws and wondering if my son would turn out like others I knew or if he would ever be happy. I have no regrets about keeping several people close to me “out of the loop” during this journey because what was most important to me was helping my son get what he needed and not at all about “keeping people in the loop” as to what I was going through and how he was progressing.

The biggest reason for my silence with many people was because I didn’t need to be questioned nor judged on my choices and decisions. Instead of spending valuable time and energy trying to explain myself to those that didn’t understand what I was going through or why I was pushing so hard for help; I chose to focus that energy on finding people that could empathize with my situation and lead me to those that could help. My journey is so far from over. It is a road less traveled; yet it is the best road for us.

I write all of the above in this post, because at least 3 times in the last 2 months someone told me that they (or someone they knew) wanted to get help for their child but either didn’t know where to go or just decided that what was going on would just go away if they stopped worrying about it. I am here to say that it will not just go away and that there are places to go, people who want to help and are prepared to help if you can find them. Keep in mind once you find that help; the hard work really begins. Unless you are willing to invest your all into helping your child, it won’t work.

I have a lot of resources at my disposal and for that I am so very thankful. It took me 3 year to gain access to all of those I have surrounded myself with and it was worth every call, every fight, every threat and every tear to get what I have gotten for my son thus far. I would do anything to make sure he has what he needs to be the best he can be. I am willing to help any of you get what you need for your child as well. If you feel that you are out of energy, out of ideas or just plain tired; read my blog and know that you are not alone! It’s just like something I learned as a young child. When it comes to asking a question “if you are thinking it someone else probably is as well, so go ahead and ask your question”.

I fight every day for my son. In fact as we move forward toward his end of the year IEP, I continue to fight for him. While I know he has grown leaps and bounds in the last 12 months, I also know if it wasn’t for all of the in school services coupled with the 12-13 hours of outside ABA services, he wouldn’t be remotely close to where he is today. I know that he still has a ways to go and I am not ready to give up on getting him continued services. He has amazing teachers and support staff around him this year and I only hope that he will have the ability to be surrounded by just as great of a staff in his new school next year.

I had a chance to meet the principal of his new school and see some of the Kindergarten classrooms. I am excited about what next year will bring for him, yet filled with anxiety waiting to find out what he will qualify for with his IEP. All I can do is stay involved, be prepared, surround myself with my “team” and be my son’s advocate. In a nut shell, be the best mom I can be to him. I have said it before and I will say it again. I brought him into this world and if I don’t stand up for him and what he deserves who will?

As with all of my posts, if this helps one person get the help they need for their son or daughter then it was worth the time it took me to write it.

Brought to Tears

Giving your child the tools to succeed, yet the freedom to fail in a safe environment, is priceless. My child is proof positive of this statement. The last 3 years have been tough on our family, yet the growth and success we have seen was worth every penny, every tear shed and every painful day it took for us to get here.

My son brought me to tears today, but not in the way that most would think. As I stood speaking with one of his educators I watched a situation unfold. A situation, that just 1 year ago, I thought would never be possible. My son, a child who has struggled his entire life with social interactions, self regulation, controversy, change and transitions, found a way to self regulate, stay composed and interact as a “typical” 5 year old when faced with a challenge.

This may seem like a minor achievement, yet to those that have been through a similar journey as my son and our family, it was a huge milestone; one that took 3 years to come to fruition. To give you a little back story I will begin with where our son was socially in December 2010. A typical day on the school playground would have consisted of the following actions to try and interact with his fellow classmates: throwing sand, pushing someone over, knocking down a sand castle, looking to an adult to figure out what to do or just plain having a meltdown because he was so overwhelmed as to what was going on around him he didn’t know where to begin. Not only did he lack the communication skills to interact with his peers, he had no idea how to relate socially. As I have mentioned in a prior blog post, our son’s shadow, RR, explained to me that our son had been born with “scratches on his CD Rom” and the job of this shadow was to teach our son the skills he was not given at birth. In essence erasing the scratches and allowing for him to think, speak and interact in a socially acceptable way without the help of a “Shadow or behavioral aid”. Today I saw so much of the early intervention come together.

Our son was on the school playground this morning when I saw the power of early intervention at its finest. He ran onto the playground hoping to play a specific game with his friends and yet when he approached a friend to play this game, that child said no and walked away. A few months ago our son’s reaction would have been some combination of a meltdown, screaming and/or a lot of protesting and yet today it was a pleasure to watch unfold. We watched him get turned down and instead of the “typical reaction” I had seen so many times over the last few years; he walked away, head held low and found a way to stay calm. The educator, not seeing what caused his sad face, turned to me and asked if he was doing ok today. I said, yes, he just got turned down to play a game with his friend and I think he is just taking some time to deal with being rejected. We stood silent for another moment and then smiled at one another as we watched his frown turn to a smile and the words, hi come out of his mouth. He had calmed himself down, turned to another friend who was trying to get his attention, said hello and started talking to her. His current ability to process situations, deal with rejection and move forward has done a 180 in last 12 months.

Our son has gone from a child that other kids looked at to a child that other kids flock to and want to be around. As I walked out of the playground and up the sidewalk to my car I watched another “miracle” un-fold before my eyes. My little guy, playing in the grass alone on the far side of the playground was approached by a group of 3 classmates; one of whom was yelling his name. This little girl and the other classmates were determined to get his attention and didn’t stop until he looked up at them and said, “What?” At that moment I watched all 4 kids (including mine) stand in a circle discussing whatever it is 5 year olds discuss on a playground. Next thing I knew they were all running around the grass and then sitting on the swings side by side. All I heard was laughter and distant chatter as I neared my car. Tears welled up in my eyes and I thought back over all of the trials and tribulations my little guy had been through over the past 3 years. I was so happy just thinking about how on top of the world he must feel to have all of these friends who want to play with him. Instead of sitting in the shadows being left behind by those he so desperately wanted to play with, he is now the child who his classmates long to have as their friend.

RR and PS, you know who you are – without the support and guidance of you both our family would not be where we are today. I am thankful every minute of every day that you both came into our lives. With your guidance as well as so many others we are where we are today. One particular teacher at TAE as well as the OPNS and ABR staff has a lot to do with this progress as well. I am not blind to the fact that there will still be tough days ahead, yet it is days like today that I truly see the sun through the clouds and although we are on the road less traveled, it is definitely the right road for us!

Battle between body and brain

I just read a friend’s post and smiled to myself b/c I could relate to just about everything she said, yet never actually put it in writing. She wrote about how it would be nice to have a month long nap (joking about wanting to be in a coma) or a day to just lay around when you feel sick and that she could really use a weekend away filled with rest and relaxation. I am sure that just about every mom can relate to what she wrote, yet KUDOS to her for actually putting it in writing on her blog! Love you KLaw - you rock!

Her blog could not have come at a better moment for me. I had just heard my 5 year old downstairs struggling to make it through something. I am not sure what set off the hysteria this time, but I am certain it was some sort of struggle between his brain and his body trying to connect. I sometimes try and figure out how he must be feeling when he just can't get his body to do what his brain is saying it should be doing. Our old bx(who was amazing by the way) would tell me to think about my son's brain in the following way – “He has a CD rom with scratches on it and our job is to help teach him how to cope well enough so that it appeared as though we erased the scratches.” He would also tell me that we were teaching him the ability to work through his issues without melting down or feeling as though he disappointed himself or those around him. This, my friends, is one of the many struggles we deal with on a daily basis. The good news is that these heightened states of emotion now happen a few times a week instead of a few times a day, lasting 15-20 minutes instead of 30-60 minutes at a time. I am not sure where we would e without the team of early interventionists we work with on a daily basis. Today l sit here with tears in my eyes because we had some tough “moments”, but overall it was a good day. I have to take each day and break it down into sections, remembering that less than a year ago things were much worse, he was much less comfortable in his own skin and we were coming undone at the seams.

As I sat upstairs listening to him try and work through whatever was "ailing" him, I could hear the frustration change to disappointment within him. At first he couldn't regulate his own body enough to say what was bothering him. Once he was able to calm himself down enough to talk through what was going on, he then became quite upset with himself for not being able to deal with whatever it was that set him off in the first place. This may make no sense to you, but to me it makes complete sense and I am certain that there are a few people following my blog that can also relate to exactly what I am saying. Since writing this paragraph I found out that he definitely was struggling with getting his words out and became furious with himself as the frustration built up. Once he was calm enough to talk through how he felt, he realized that he failed to pick up just one thing that he had thrown during this “heightened state of emotion” and then became very disappointed in himself, saying that he didn’t do a good job and that the Bx should not tell him he did a good job because he didn’t. See, part of what goes through his little mind is that although he is in a heightened state of emotion, he knows what he wants to say and just can’t get it from his brain to his mouth or from his brain through to his body to stay calm. Once he finally calms down, at times he becomes disappointed in his own actions and then once again gets frustrated, but this time for not being able to stay in control. The struggle he faces daily b/w brain and body saddens me, yet the progress he has made in his ability to cope with these issues brings a huge smile to my face and an overall feeling of hope and joy!