Thursday, August 29, 2013

It's Not Fair!

I rarely have those "whoa is me" pitty moments but for some reason today I did. Let me start however by saying that H had a wonderful first day of school and that it was everything we had hoped for. He enjoyed the smaller ratios, really enjoyed his teacher and even went on the potty!! Granted he missed and peed on his pants it was still counted as him going on the potty so we will take it!
So why do I think I deserve a small pitty party today then? My birthday boy started Pre-K today and it was only because he is considered disabled. I should be thrilled he is getting top notch care and education with PPCD but there is still a part of me that is sad that he is only getting this due to his, well disability. I need to put that aside and focus on the needs of my child and know that this is not a bad thing but that this is what he needs and he deserves, what we have fought to hard to get for him.
When I saw my sweet boys face walking down the hall I knew that he had a great day and was adapting to his new environment. I could see the exhaustion in his face but I saw the pride he had when he got off the bus. My co worker told me as she retrieved him from the bus he was very excited. I later read a note from his teacher that went into great detail on his day. This was reassuring and she was glad to have him in her class.
Tonight was my oldest son's open house at his middle school. Sean is in 8th grade and we are really focused on getting him prepared for high school. The original plan was to keep H at home with dad so that he could relax and not have to endure the insanity of the outing. However that plan quickly changed when Chris was needed to help out at TLC. I was left with two choices. Take this birthday boy to his big brother's meet the teacher or stay home and have a quiet evening celebrating our big 3 year olds day. I want Sean to know I take great interest in his education and want to see him succeed so of course we opted to go to his open house.
In order to make this evening happen in my mind I rushed home from the stables to grab H's iPad. I figured while I am talking to teacher's he can sit on the floor and go to town. I had this perfect plan all mapped out and was only kidding myself that it was fool proof. After all when is a child on the spectrum EVER predictable?! I think in hindsight this was his way for getting back at me for now jacking with two birthdays of his.
We showed up with about 15 minutes left of the PTA meeting. I really wanted to get info on this so that I might consider getting involved and also know what is going on with the school. Aside from sitting in the way back of the cafeteria it was almost done so I missed most the info and I could hardly hear. I sat with a friend of ours who is almost like an uncle to H. I knew if he started struggling he would understand. However what I was not prepared for was H to start his uncontrollable laughter that echoed and boomed through the cafeteria. Uncle Seth was not much help in fact it was all he could do to refrain from laughing uncontrollably himself! I stepped out a few times till he stopped, would return hand him his iPad and breathe, only to have him start up AGAIN! I would like to assume the PTA meeting ended early due to the fact that there was no more business to discuss and not due to the fact my child was so loud that more attention was on him than the PTA president.
We made a  bee line to Sean's first period Science class. We still had about 8 minutes before the meeting of the teachers actually began but thankfully his science teacher saw my sense of urgency to get this done so she gave us the skinny and we bolted. We made it to the next classroom, this one was actually his 3rd period class however for the sake of back tracking we just went to it next.  This is about the time it went down hill. I am thankful to a friend of ours who was in the room who can fill me in on what I missed since this was the class that Sean wants to drop and I want to know what this class entailed before letting him drop. I got as far as it being a computer class and it happened. I wanted to suddenly melt away into the floor and just vanish from all the eyes that landed upon me and H.
I generally do not become phased by the quirks of H. In fact I have learned to embrace them. However I do recall what it was like to be in that awkward teenage years and how easily embarrassed they can become. I was trying to make this as enjoyable as possible without drawing attention to H and making this about Sean. I quickly grabbed H stepped out in the hall and fought back tears. I was caught off guard by those tears and did what I could to quickly stop them. No more attention needed to be drawn to us. He was to far gone to even use a brush or chew tub. I managed to get his weighted compression vest on but that was minimal help at best. Saved by the bell! It was time to take Sean to his next class. I avoided eye contact with everyone grabbed our stuff and bolted to the hall.
We headed over to the gym where I thought we could be safe. Sean and I agree we were safe for about 10 seconds. H sat up on the bleachers and when he realized there was a echo in the gym he proceeded to growl, shriek and laugh as loud as he could to hear the sound. I don't know about you guys but my gym teachers where always pretty intimidating and these guys were no different. I I was hoping that the next 4 minutes and 50 seconds would just hurry up so we could leave. I am sure the other parents around us felt the same.
We got to the next room and realized he was done. Between trying to turn on all the computers, take down a desk, strip and hide under a table it was all over. Oh did I mention the teacher never once acknowledged us continued talking to her co workers and just let us sit there. Sean was even embarrassed by this teacher and told me he was sorry we just had to sit through that. I will email her I guess.
We got to the car and I let out a sigh of relief. It was over this hell was over. Then it hit me. Today is H's birthday and I just dragged him around for over an hour through a middle school with tons of people, lots of noise and no familiarity to it at all. I realized this is the second birthday in a row I have essentially screwed him on. I felt crappy. This is not fair! It's not fair to us and it is certainly not fair to him!
Last years birthday was spent in a developmental pedi's office in Lubbock being told our child had Fragile X and he needed genetic testing and nothing much more was said to us. We made him endure a 2 hour car ride, a 20 min doctors apt that was a joke and then 3 big males holding him down to draw blood. Gosh I guess if this was me I would retaliate and let it be known that I don't enjoy spending my birthday like this at all!
When we put ourselves in new situations with H we realize how unfair it is for us. These things require pep talks and social stories, every trick known in the book and tag teaming. I did none of that tonight and that was unfair to H. This is not resentment towards H it is my frustration of this Spectrum Disorder that now consumed our life.  However if you were to have sat back and asked Sean if he cared about his brother's behavior tonight he said he didn't care. He knows this is who he is and accepts him and if his peers can't its their loss. So while this all seems so unfair its just how our life is. To be comfortable and accepting of this is now up to us regardless of our situations we are in.

Thursday, August 15, 2013

They don't belong here...

I used to be one of those people who would encounter a difficult child and say " Oh they don't belong here!" They would be hard to handle, difficult children that made me question my ability to work with children. I had only been working with children a short time and had not even begun my pursuit of a CDA (Child Development Associates) or Early Childhood Degree. I didn't know much about Sensory Processing Disorder, auditory and speech impairments or even what challenging behaviors were. To me ti was a parent not doing their job and spoiling their child. Don't get me wrong I am well aware there are plenty of those running around so I am not naive to that!
My first three years I encountered both types of children yet I was green to the ways of handling them. I admit I didn't have the patients  I do now and I believe that has come with time in the field. My first real encounter with children who had developmental delays were real eye openers. It was a frustrating time, but in the end taught me so much.  They had their strength's and their weaknesses just like their typical peers. They might have been harder to work with and require much more time and attention but in the end it really did teach me a lot.
In last few years my encounters have grown and each time I learn a bit more and become much more patient and understanding. It was while working with one of my most severely behaviorally challenged child that I really began to see that we do give up hope on those children much to easily. This little boy was roughly three and a half years old, bi lingual, not potty trained, from a very unstable home, dad was incarcerated, step dad raised him while mom worked most of the time along with taking care of his other siblings. The deck was becoming stacked against this kid. Throw in some anger issues and speech delays some might say it was no wonder he was constantly given up on and moved from one care givers room to another.
Every teacher who, up until this point, had him had given up on him, treated him like an outcast and that he simply didn't belong here. He was very smart and very lovable when he was given the chance but he was in tune to those who casted him aside and so in return gave them nothing. If I called out of work they wold send him home because he would misbehave or the teachers simply didn't want to deal with him. I personally enjoyed having him in my class and learned quiet a bit from him. Children are not one size fits all they are unique and special. You have to treat them and work with them accordingly.
As time has gone on it has shown me that I really had a lot to learn when it comes to working with children. I found myself very occupied suddenly with school and training. I needed to be arming myself with more than I had been. Not long after that I found myself with a child who has special needs and my understanding and knowledge grew ten fold in that time. It really has heightened my sensitivity to how these children are treated.
It seems when you are more focused on a certain thing you become more aware of it in your surroundings. In this case I am focused on special needs and behavior. I guess the norm now a days is to kick them to the curb or blot them off when they don't fit our cookie cutter mold of the perfect child. How will they be what we want them to be if we constantly cast them off to the side and not give them the chance? How can we help them learn and grow when we shut them out? How can we get them to respect us when we  ourselves don't respect them? The answer is simple, we won't and we can't until we open ourselves up and really take the time to address these situations. If we are constantly passing the buck eventually we are going to come up broke, empty handed and guilty of not doing what we set out to do when we became an educator. We have not only failed the child but we have in turn failed ourselves also.
So I ask you to really think about the next time you say a child doesn't belong here, where do they belong? Why don't they belong? How can you fix it and get them to somehow belong?

Tuesday, August 13, 2013

Dear ECI

With only two weeks left with our ECI team I started thinking of what their dedication and services have done for not only our H but for our family.

Dear Staci, Becky, Starla and the rest of the team who has spent time helping us with H,
Here we are just a few weeks away from our last weeks with you, two to be exact. This is just almost to hard to write because part of me in still in denial our services with you will be ending soon. 18 months ago we started our journey with you. I was unsure of what would even come of our initial consultation, if anyone would even see the need for it or if I was just a paranoid mom who forgot what it was like to raise a toddler boy.
In May of 2012 we began this journey. I have saved every print off that I was given from the first 6 months prior to our first appointment to gain a actual diagnosis. I often look at those on days where I think things are not going well and look and see just how far we have come. Sometimes it's those actual notes that completely keep me motivated in doing what I do for H. When I see how bad it was and how much work was needing to be done and then I know everything we have gone through was for a purpose. I would not change any of it.
The day we headed out for our first diagnosis I just remember the support Staci gave and told me to be strong. If it didn't go well we could always ask for a second opinion. At the end of the day I called her in tears at the possible diagnosis and I remember Staci saying we will just do what we have always done he is still the same child no matter what the diagnosis. We also ended up going with that second opinion. I am so glad to this day we did that.
As we have moved on I feel our team has bonded and grown together. We have laughed together, cried together, and certainly felt beyond frustrated together. My team has become like family to us. I count on these visits and consults like I count on visits with my own family. I know that H has grown to count on his weekly Tuesday visits with Ms. Staci. His eyes light up at the mention of her name. Maybe we can work out some visits or something. Hint, hint Ms. Staci!
So now we are two weeks away from his 3rd birthday. On the 29th of this month he will begin school and his transition to preschool. Staci will have one last visit with him just a few days prior to him being 3. She will have seen him grow from a young toddler to a preschooler. She was a major part of this transformation and the progress he has made. We are forever grateful.
I have no idea if there are enough gifts and thank yous in this world to let the team that worked with us know how much we appreciate what they have done for us. The doors they have opened up. The changes that were made. I just hope our team realizes just how much they mean to us and that we could not have done this without them. The are my miracle workers and I just hope that other families realize just how valuable these ladies are and how much they love doing what they do. They truly want to help families and see these children grow and succeed in life.
Thank you so much again. We will miss you so much.
The Thomas family!