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.