All in the way you word it

My mother called to "check in" last night and amazingly I had the most civilized conversation with her and my father about Speech Therapy my son has just begun for assistance in Pragmatic language. The typical push back, non-believer mentality and lack of appreciation for early intervention services was overtaken by an appreciation for what I was doing for my child. They were both a bit confused b/c of how clear and extensive his speech and language skills are but once I explained what Pragmatic language really meant they were quite interested in finding out more. I was shocked by their openess to really listen and try to understand what led me to get him these services for our son. Once my dad listened and explained it to my mom they were both impressed with what had been discovered and the fact that my son was being offered free Speech Therapy through the school district.

I think this just goes to show that it is "all in the way you word it." Had I said, by the way my son now has an IEP through the school district for XYZ issues I am certain the discussion would have gone down an entirely different path. After many many years of trial and error I think I have finally figured out how I need to speak with parents in order to get them to see outside of their little box.

I bring up this conversation b/c if you are following this blog, you either know of my family or you have most likely come across at least one person that has reacted to your early intervention choices with the "non-believer" attitude. I hope this shows that no matter how much you don't think someone can open their hearts, ears and eyes to see what is going on, there is hope. I am not sure that I will ever share with them all of what I have done thus far to help my son but last night was definitely a step in the right direction. I think baby steps are the best way to go.

Understanding SPD and ASD

Over the last 2 years I have often wondered how many people out there are going through a similar situation as we are in our family. Not knowing what is causing reactions that our child has to certain situations, wondering why the oddest thing can cause a negative reaction and why other days we could go through an entire day with nothing but happiness and compliance. A question I often asked myself was.....Is this just a typical child of this age or is something more going on? Knowing that I had grown up with a sibling who had some of these tendencies I eventually came to the conclusion that they were not the norm and knew I had to do something about it.

After 2.5 years of early intervention, a lot of guidance and support from experts, pushing away those that were or still are non-believers, I have come to the conclusion that there is a very fine line between SPD, ASD and true behavioral issues. I also now understand that what used to be categorized as behavioral, learning,social or communication challenges now seem to typically fall within Sensory Processing Disorder or the Autistic Spectrum Disorder.

Here is a statistic that I pulled off of the cdc.gov website. The CDC now reports that, "ASDs are a group of developmental disabilities that can cause significant social, communication and behavioral challenges. CDC estimates that an average of 1 in 110 children in the U.S have an ASD." What constitutes a "significant" delay is completely subjective. Sometimes this subjectivity can be the difference b/w a child getting awarded services for early intervention.

Over the last two years I have come to understand that when a child has a Sensory Processing Disorder and/or an Autistic Spectrum Disorder it is pretty safe to assume that some outside trigger or series of triggers caused the actual behavioral reaction - putting to good use the quote, "For every action there is a reaction" The key to success with those that are borderline with either of these disorders is to find experts that can help you figure out what is going on with your child and setting goals to help them deal with the areas that don't come easy.

Many times figuring it out is a really difficult and stressful process. I am here to tell you that figuring it out and setting a plan of action to help your child deal with things that don't come easy to him/her is priceless. The reward well outweighs the long road to figuring out what is causing the symptoms. It is sort of like getting sick...... going to the Dr. a million times..getting tons of tests done that all come back negative.....and deciding that you will not give up until you figure out what is going on. It is that drive to find the answers that will lead you to success. It is the million and one visit that could give you the diagnosis you need in order to get better.

The key to staying sane through all of this is knowing when someone is objectively assessing your child vs subjectively assessing them. Trust me on this one as I know first hand what sort of assessment results can come from someone who makes up their mind about a child's behavior before they even begin assessing them. My advice on this topic is to take all of it with a grain of salt.

Keep an open mind, know what to listen to and what to brush off while being realistic about your situation. For example, if 10 professionals tell you one thing about your child's situation yet the 11th person says something completely opposite, it is pretty safe to assume that this 11th person is giving you inaccurate information. There is the rare situation that this 11th person may see something that no one else did. One could hold out hope that this one person has some sort of insight into their child that all of the other professionals didn't but to say that statement is the norm is a long shot.

I truly believe that a parent must do what he/she feels is best for their child and not what others feel is best for their child. If I listened to the opinions of many around me I would still be dealing with a very unhappy, misunderstood and lost child. Instead I went with my gut feeling and am now dealing with a very bright, happy and well understood child, set up with the tools to succeed socially, emotionally and educationally in a very tough world.

Missed opportunities

My husband and I had the opportunity to go to dinner with some "new" friends this weekend and it was quite interesting to find out about the parallel worlds we seem to have lived in for the last few years. As we shared story after story, it was mind blowing how similar our family history, the paths of our relationships, our wedding planning drama and even current events were to one another.

To me, the most interesting part of our stories was how we (my friend and myself) took the tough path.........the one that made us look deep within ourselves and figure out what was best for us alone and our new families. On the other hand, our "loved ones" sat back and took the path of least resistance.........the one where they did not need to look deep inside themselves and admit they had anything to do with the inevitable parting of ways. Yet another "missed opportunity" to fix what started to break many many years ago.

Our families were quite different, yet the decisions to ignore things that didn't seem right, the inability to see the issues that were right in front of their eyes and the complete denial that there was any wrong done on their part was the same common theme. When it came to outcomes of many situations their inability to discuss their shortcomings or the situation in general, completely altered the outcome of many situations within both of our families..

In my heart, I strongly believe that the first step in fixing any situation is admitting there is an issue. Without the ability to admit your faults, there is no chance of fixing what is broken. The problem with that statement is that many people don't think there is anything wrong with their actions, behaviors or decisions nor do they care to hear from anyone else that there is something wrong. The last thing that a person in denial wants to hear is that they need help or that what they think, say and do may not always be the right thing to think, say or do.

The hardest part about having people like this in your family or circle of friends is that although you may love them, these relationships are toxic. Those unable to confront their fears or issues are stuck in their own reality and many times it drains the life out of those around them. Trying to help them see what is right in front of them is an impossible task to complete. For many, their reality is the only way of thinking about things and no matter how much you try to reason with them, they just can't accept another way of thinking.

My memory bank is filled with many great memories yet some of the most vivid memories I have revolve around the many "missed opportunities" to learn something from mistakes made. Unlike most members of my family, each and ever day I make the choice to learn something from every single moment in my life. I think about each day, the choices I made, the people I encountered, how I dealt with them and what I could have done differently to have possibly changed the situation or the outcome. Many times no matter what I did, the situation would end up with the same outcome, yet other times one thing said or done could have completely changed the course of any particular encounter.

I would not say that I don't make mistakes all of the time but what I am proud of is the fact that I can recognize my short coming and do my best to not make the same mistakes over and over again. Unfortunately many people stuck in their "world" of right and wrong, never open their eyes enough to see the big picture, or realize what they are missing out on b/c they know what they know and don't care to see life any other way.

After having kids I realized that I wish I could always look at life "through the eyes of a child" because doing so would make things more simple, more beautiful and without prejudice/bias. A simple smile, kind word or a hug is enough to make a child smile for hours. As an adult, most times a smile, kind word or hug happens as a reaction to something instead of a just because you felt like it sort of reaction.

Many say that I am the black sheep of my family, sort of like my great aunt....one that I love, respected and got along with better than almost anyone else in my family. My grandmother and I had a great relationship as well. Both of these family members were always there for me...........listening, laughing and talking to me without judgement.

When I didn't want to talk they were there with a hug, a smile or just to hang out. Never judging or pushing me to share my thoughts or do something that I didn't feel was in my best interest at the time. Almost as though they knew what I was thinking or feeling without even asking. Other members of my family would assume what I was thinking, avoid what I was trying to explain or were simply in denial of certain situations. In a nutshell avoidance was a big theme of my immediate family. A common theme between myself and the "new friends" I mention above.

What I came to realize at a very young age is that avoiding what is right in front of your eyes, doesn't make it go away. In fact avoiding things that should get attention or "band-aiding" them by trying to compensate in other ways eventually leads you down a path that ends with a crash and burn situation. I believe I am one of the lucky one's b/c I chose to learn from all of these situations, take the good and bad and learn to make the best of a tough situation.

Early intervention never came into my life but I believe that intervention, whether it be early or late in life is a great thing if/when the person needing the intervention to take place is ready for it. You have to be able to put yourself in a very vulnerable state before you can admit your shortcomings, learn how to deal with them and then find a way to benefit from the guidance and support of others.

I applaud each and every person who has allowed themselves to be this vulnerable!

A special thanks to my support system

This post goes out to all of those that have been supporting me through this journey so far. Each of you helping me in your own way and several of you are now following this blog. A friend of mine asked how I felt when I got my son's IEP results and found out that he was approved for services under the category of Autistic Like Behaviors.

My initial reaction was extremely mixed. I was not sure how to feel. I knew that this category in no way labeled him as having autism nor was it a diagnosis. In fact I came to find out that it was quite the opposite. It was the result of 7 professionals opinions, observations and many many assessment results compiled, reviewed, discussed and put into a plan of action to help my son continue his journey toward accomplishing the goals set for him over a year ago.

As a team, the conclusion was that he had enough behaviors to qualify for services. Knowing that he qualified for the early intervention services he needed in order to continue his growth well outweighed any one qualifying factor. My only concern is that my child gets what he needs to give him the best opportunity for success and happiness as he grows up. Right now I am 100% confident that we are on the right journey for him and for our family.

On another topic, I need to thank one of my friends for a comment she made to me the other day. She told me that when she had her child assessed by the Regional Center the gap in time b/w her child's first assessment and the final assessment was large enough for him to have changed behaviors due to the early intervention she was paying for out of pocket. I was shocked that this took place and then the same thing almost happened to me today.

Today, the regional center called me to set up our son's final assessment. They wanted to set up this meeting for mid August, stating that the calendar was being booked 2 months out for this assessment. I found that to be unacceptable since we started this process mid April, had the 2nd assessment mid May and they wanted to wait another 2 months for the final assessment. I thought back to what my friend had told me just a day ago and realized that if we waited another 2 months for the final evaluation it was very likely that my child would do what hers did........assess as though he was a different child.

I stood my ground, reasoned with the person at the office and finally came to an agreement that worked for me. Instead of waiting another 2 months for an assessment, my son is now having his final assessment next week. Persistence pays off when you do it the right way. You have to be stern, yet sincere. Don't lose your cool, find a way to stand your ground for what you believe in and most of all, keep your eye on the goal.........to make sure you child gets what he/she needs in order to be happy, confident and comfortable in his/her own skin.

For the first time in a long time I am very optimistic about a happy and bright future for our amazing first born son.

Kids and Cars

The more I think about it the more I come to the conculsion that kids are like cars. Each has their own set of symptoms but diagnosing what is really going on is the tough part. Cars talk in squeeks and strange noises and kids talk through their actions or lack there of actions. Either way, it is easy to see or hear that there is something wrong but sometimes it is almost impossible to diagnose what is causing the issues to occur.

Over the last two years I heard many many opinions and comments from friends, families and strangers - "it's a good thing your kid is cute", "he has such a kind heart and he tries so hard, if he just wasn't so difficult to deal with he would be great", "your kid has a behavior problem", "let me teach you how to deal with his reactions, I can help you stop his meltdowns or tantrums", "there is nothing wrong with your kid, he is just being a boy" "you think that was a meltdown, that was just a little tantrum b/c he didn't get what he wanted", "wow, he has really matured over the last few months", "he is such a kind hearted child", "whatever you have been doing to help him...keep it up" and finally, "you are an advocate for your child, you should share your story for others to find hope and ways to keep moving past the red tape and get their child the help they need"

As you can see, the comments and opinions went 360, but what most people didn't know was that my son had been receiving many many hours of early intervention services so that we could figure out the cause of his issues instead of just treating the symptoms. Although we still don't know the underlying cause of his reactions in certain situations (some days he can self regulate and other days he is just a loose cannon) what we do know with 100% certainty, is that we are on the right path and that every step we have taken thus far has led us a little closer to the answers we have been seeking for over 2 years.

So if you are reading this post and in anyway feel that your situation is like that undiagnosed sound under the hood of your car, don't give up............keep peeling back the layers, one symptom at a time.........eventually you will find the cause and once you do you will be able to work toward fixing it.

Early Intervention: The Zax Bypass - lessons learned

Early Intervention: The Zax Bypass - lessons learned: "'by Dr. SeussFrom The Sneetches and Other StoriesCopyright 1961 by Theodor S. Geisel and Audrey S. Geisel, renewed 1989 One day, making t..."

The Zax Bypass - lessons learned

"by Dr. SeussFrom The Sneetches and Other StoriesCopyright 1961 by Theodor S. Geisel and Audrey S. Geisel, renewed 1989



One day, making tracksIn the prairie of Prax,Came a North-Going ZaxAnd a South-Going Zax.
And it happened that both of them came to a placeWhere they bumped. There they stood.Foot to foot. Face to face.



“Look here, now!” the North-Going Zax said, “I say!You are blocking my path. You are right in my way.I’m a North-Going Zax and I always go north.Get out of my way, now, and let me go forth!”



“Who’s in whose way?” snapped the South-Going Zax.“I always go south, making south-going tracks.So you’re in MY way! And I ask you to moveAnd let me go south in my south-going groove.”



Then the North-Going Zax puffed his chest up with pride.“I never,” he said, “take a step to one side.And I’ll prove to you that I won’t change my waysIf I have to keep standing here fifty-nine days!”



“And I’ll prove to YOU,” yelled the South-Going Zax,“That I can stand here in the prairie of PraxFor fifty-nine years! For I live by a ruleThat I learned as a boy back in South-Going School.Never budge! That’s my rule. Never budge in the least!Not an inch to the west! Not an inch to the east!I’ll stay here, not budging! I can and I willIf it makes you and me and the whole world stand still!”



Well…Of course the world didn’t stand still. The world grew.In a couple of years, the new highway came throughAnd they built it right over those two stubborn ZaxAnd left them there, standing un-budged in their tracks."


I am quoting this Dr. Seuss story b/c to me it is a great representation of one of the path's I could have taken on my journey to help my son. For about 6 months I tried to get into our local Regional center for an assessment without success. I called and called, first being told someone would call me back, then that they couldn't find the paperwork my out of state center had sent to them for review and admission, then finally being told about a waiting list. By this time 6 months has passed, a lot of frustration had built and I did just what the Zax do above, NOTHING. I hung up the phone feeling defeated and not knowing that they had an obligation to me and my son to actually assess him and provide services to him in order to give him the early intervention that he needed in areas that he was significantly delayed.


At this time my son, only 2 years old, had a speech delay, some social delay and a few other minor things that were definitely in progress of growth. Not knowing my rights when I moved to my new state, these services and my push for assistance stopped there..but only for a short time.

Thankfully, after another 6 months, this time of doing nothing but feeling frustrated and wondering what I can do next, I chose to not just stand in my tracks anymore waiting and hoping for the other person to make the first move. I decided to once again take a stand for my son's well being. I was referred to a development psychologist that came and assessed our son at home.....this led to working briefly with an OT which then led me to have the psychologist observe him in his school environment. This evaluation led us to change preschool's for my son due to the lack of flexibility the director of the preschool had when it came to early intervention. The new preschool was a great change for him......


In this new school he started to learn many of the social skills he was lacking, his language grew and in no time he was talking in full sentences, making some great friends and was an all around much happier child. My story doesn't end here and I am not sure that it will ever end. There may always be a need for some sort of extra support for my child. So a year goes by and he starts a new classroom, this time things start out great and then I am told he begins to spiral backwards in some of these ever evolving areas. After 6 months of asking the teachers if everything was ok, and being told yes yes, he is doing what is age appropriate, etc I found out that there were some sensory, self regulation, transition and social interaction issues that the teachers just couldn't support on their own. The teachers said they needed help as they just weren't sure how to give our son the attention and support he needed to continue to grow and thrive in their classroom. Today I thank them for letting go of their pride and reaching out to me with these concerns. This is another moment of truth that would change my son's life forever.


At this time, in my mind, I had no choice but to go out and get additional help for my son. Did it cost me a small fortune, well of course it did, BUT it also changed the course of his life. With the development psychologist by my side, along with the teachers, pre-school administrators, my husband and a few close friends who were going through similar issues, I found the strength and courage to continue to ask for help and guidance in the areas that I lacked knowledge and expertise.

By the time the end of Decemeber 2010 rolled around I had my son's own little "dream team" in place. We had the psychologist, the OT, a shadow/aid, teachers, friends etc. I found a group of friends that could support me 100% and stand behind me to push me forward when I wanted to quit this journey.

In early 2011 I found out from this team of experts that my son should never have been turned away from the regional center, that no child under 3 was to be turned away for an assessment. I also found out that we had the right to get an IEP and that potentially many of the services I was providing for my son out of pocket could/would be paid for by the school district and/or the states regional center. This begins the next phase of my journey to finding out what was truly going on with my son and getting him every single service possible to assist him in becoming his best self....stay tuned for more

For those of you reading this blog for the first time, it is simply a story of my journey and in no way stating that anyone should do things the way I am doing them or take my information as "the law" it is simply a way to share with others what my family and I went through to get to where we are today, those that helped us through each step and about the journey that lies ahead of us.

A very important lesson I learned along my journey thus far is if you want what is best for your child, and your sanity for that matter :)..........don't be a "Zax" and just stand still thinking that someone else will make this happen for you. You control your own destiny and that of your child's when he/she is too young to have a voice. Be strong, take action and don't take no for an answer! If you don't stand up for your child, who will?

Feel free to comment, ask questions or just follow along on our journey

IEP

There are many reasons a child may need an IEP and I highly encourage every mom and dad that has concerns about their child's growth and development to reach out and request an IEP. There is no charge for an IEP and if your child happens to qualify for one, he/she would be eligible for one or several services to assist them in their progress toward social/emotional and/or academic growth and development.

In my opinion, there is no better gift you can give your child. The tools to be a happy, confident person will carry them far within their lifetime.

When I was a child no one talked about ADD, ADHD, Autistic Like Behaviors or Autistic Spectrum Disorders. There were kids in the "special classroom" and those that were mainstreamed. The only thing I remember hearing about as a child was the term "learning disability" This could mean that the person was autistic, dyslexic, had behavioral issues, ADD or any other "issue" that affected his/her learning.

38 years later, there are so many potential reasons for a child to be given an IEP from their school districts assessment team and possibly awarded free services to assist in bettering the child's chances of academic and social/emotional success.

We had the opportunity to have our son assessed and it is one of the best things we have done as parents so far. I will post again soon about our road to the IEP and where we go next.

Are you brave enough to ask for help?

Are you brave enough to ask for help? Some say that if you reach out for help you are weak and others say it means you are brave. I believe that asking for help is a sign of strength and courage. A trait that I wish more people had especially when it comes to helping their children.

I have several friends who know their child needs help, want to get them that help and either don't know where to go for help or are too afraid to ask for it. Some others go out and seek the help but are too scared to go and find out the results for fear of finding out that something is wrong with their child. Stating that this person or that person said they would help me get the answers but I am not getting any help from them. I share my experiences with all of these friends and tell them that no one is going to be able to help your child like you can, whether its helping them yourself or reaching out for someone with an expertise to help you help them. Whether or not You the parent asks for help is your choice. Keep in mind that either way you still are making a difference in your child's life. One that will either positively or negatively affect them for the rest of their years. It is your choice as it was mine to ask for help.

I read a post this morning that said something like, we all want to think our kids are awesome and perfect and there is nothing wrong with them. I actually found that comment quite interesting. If the parent thinks that to be the case then my opinion is that maybe they also need some assistance in seeing reality vs a world they wish they lived in. I agree with them that we all want to believe that to be the case but the reality of it is we all need help at some point in our lives. The outcome lies in whether or not we choose to do something about it.

It was extremely hard to let down my pride and ask for help but after seeing things in my son that I saw in other family members growing up I knew I had to do something and fast. The last thing I wanted for my child was for him to grow up with self esteem issues, anger management issues and the inability to make lasting friendships which is exactly what this family member has grown into as an adult.

The reason for my blog is this: I mentioned something about wanting to become an advocate for early intervention services to several of my friends and the early intervention team I work with for my son and their response was but you already are an advocate. This comment made me think......well if that is the case, why not blog about my experiences and see if I can help others out there find a way to get their child early intervention in whatever way they need it.

I will continue to share my journey and write about my past, my son's past, where we started, where we are today and where we go next. I am certain that some will enjoy reading what I write and some will have have very different opinions. Either way, they are just my thoughts and this is just my blog to do with what I want.

I welcome comments and questions as I am hoping this blog allows me to help someone quicker than I was helped. I lost a year and a half of early intervention services b/c I didn't know my rights as a parent. I am hoping that this blog allows me to help others figure out how to cut through the red tape instead of having to go through all of the headaches family had to endure to get to where we are today.

Early Intervention: Why I decided to start a blog

Early Intervention: Why I decided to start a blog: "For the last 2.5 years I have been doing everything in my power to give my first born every single opportunity to gain skills in areas that ..."

Why I decided to start a blog

For the last 2.5 years I have been doing everything in my power to give my first born every single opportunity to gain skills in areas that he has been lacking since birth. I felt that it was my duty to do so as a parent and I am so glad that I took that chance even though it meant some sacrifice for myself and my husband. I believe that this was one of the best decisions I have made in my life to date.

When my first son was 23 months old we started speech/language services through infant and toddlers program. This was a free program. We found out about it from our pediatirican who recommended that we get our son assessed for these services. We spent about 2 months working with this therapist before moving across the country. Prior to moving I had all of the paperwork sent to the Regional Center in our local area, had copies of all the reports made and found the number to call once we arrived in our new location.

Unfortunately having all of this information with me didn't give me the one piece of information I needed in order to keep these services going when we got to this new location. I called and called for 6 months trying to get my son in for an assessment. First I was told someone would call me back, then I was told that they weren't sure if it mattered if my paperwork was there or not, then I got a script from our new pediatrician and that still didn't work. Finally I was told that there was a waiting list. After 6 months of trying I finally gave up. Giving up was one of the worst decisions I have made in my life to date. The reason being, I was never supposed to be turned away. I found out just 4 months ago that under the age of 3 every child has the right to be assessed for services from a regional center. Unfortunately this was the one piece of information no one shared with me and a piece of information that would take the next 2 years of our lives in a completely different direction that it would have taken if I had known my rights.

When my son was about 30 months old I heard about a developmental psychologist that had helped a friend of mine. The day we met this person was a huge turning point for our family. Since deciding to spend countless hours and countless dollars to help our son we have had to deal with so many different comments, opinions on whether or not early intervention for someone's child is necessary or worth the time and effort.

I am here to say that it is worth every penny, every minute and every comment you may hear from a non-believer. In the days and months to come I will share more and more of my story. I will talk about what we went through to get to where we are today, provide update on what we are going through now and our plans for where we go next. I will also talk about what happened that led me to seek out help in the first place, why I believe that every child can use some sort of early intervention and most of all why it is so important to never give up on your child and most importantly why it is ok to let go of your pride and ask for help.