My Baby Had a Solo In The Thanksgiving Show!

My son is in a special needs classroom but spends as much time as he can in a typical Kindergarten setting. As the days go by, his teachers continue to add more and more time in the main classroom and he is doing great! His teacher told me last week about a Thanksgiving show that the big class was putting on and asked me to practice the poems with N. I went over it once with him but he gave me that "seriously Mom, I have been reading for 3 years and I memorize things almost instantly so yeh, I'm good" look. He read the last line for me to appease me but other than talking about the upcoming show, we didn't prepare much at home.

Today Hubby, Little Brother and I went to see our star perform his poems. He wore a paper vest and a hat with feathers and he looked great in his costume. When we went over to the big Kindergarten class it was just N and one other boy from his room and we were a couple minutes late so they quickly shuffled into place. The big class teacher has always been so friendly and welcoming to my little man and she was just the same today. She told him where to stand and he followed along with the songs he knew. The class had been practicing 10 or so chants but he only knew 3 of them.

When it came time for the Pilgrim poem the teacher told N to come up and say it for everyone. His teacher was surprised because she thought he was going to be joining all the other kids but she had actually saved that one for N and his other classmate that went over there with us. The other boy had gotten upset earlier and had to go back to the room which left my little man on his own for his big solo debut! His teacher held the poem up for him and he read every single word in front of the whole class and all of the families. He did a great job!

I thought I took video of his great job but sadly my phone was back in camera mode so it is just a picture. I did get a video of the whole audience cheering for my boy, so that was great! Our team is so wonderful and we know how very lucky we are to have all of them in our corner. They tell us often how much they adore our son and are very outspoken about how far they "just know" he is going to go. Our family of course knows this but when outsiders say it and feel it, it means the world to us!

I am a very proud and grateful-"THANKFUL" Mommy today!
Happy Thanksgiving!

 

I can't believe it wasn't on video!

I checked it!

This is the poem he read. He did great!

My Little Boy is Fitting In!

Today as we walked into school I heard a little voice yelling my son's name. A little boy came running up and said hi and when my son turned around to look at him, he hugged him! I have never seen him so I asked him his name and he said that my son is in his Gym class and plays with him sometimes. This little boy is in the typical Kindergarten class and as the weeks go by my little man is spending more and more time in the integrated classroom setting.

This little boy was genuinely excited to see my man and it totally made my day! I told his teacher about our encounter when we got to class and she said that this boy often asks to be N's buddy and plays with him during group time. This is all a mom like me could ask for! I love that the kids accept him and understand that just because he learns things in a different way doesn't mean that he isn't amazing.

I bet this boy has no idea the smile he has put on my face today!

Clowns Love Special Needs

We had a blast this weekend with the kids and their cousins at the Cider Mill. My kids don't love plain donuts and cider so we brought our own snacks and went along for the experience. We walked around and looked at the ducks while we ate our treats and visited with family. There was a section where vendors were set up selling items and offering face painting and paint tattoos. We went over to check it out and 2 cute clowns were running the tattoo booth. I asked if they could paint my son's hand instead of his face because he has special needs and I wasn't sure if he would like it especially because he wouldn't be able to see it.

When one of the clowns heard "special needs" she jumped up and said "that's me!" She wanted us to sit down at her station right away! She said that she drives a special needs bus during the week and loves the kids. It was very sweet and felt so great to see someone get so excited about a special needs boy. We had a blast and both of my boys got tattoos that they loved. Her assistant made fun balloon animals for us and a day that I initially was nervous about turned out to be a great time for everyone.

Going to new places always comes with a little bit of worry and hope that there will be something for everyone to enjoy so we don't have to cut the trip short. This was the perfect balance of fun, nature and snacks. I even got to enjoy an apple cider slushee! Fall is fast approaching and we are off to a great start!

 

 

  

This Drinking Fountain Made My Day!

Here it is the third day of school and everyone is doing great. My boy loves his teacher, she loves him and tells me how great he is and we couldn't be happier, or so I thought.

As I have mentioned before, we have been in feeding therapy for a few years now but feeding isn't the only thing we work on.  We also work tirelessly on drinking. My son loves milk but will only drink it out of a particular sippy cup and now that he is a big boy we can't send that cup everywhere he goes. He will drink pop out of a cup or through a straw but they don't want that in school so I have been very worried about him having to go 8 full hours without a drink. On a rare occasion he will try a sip of apple juice and as of very recently he will sip water but only from the water slide sprayer and in the shower. He hasn't had water out of a cup since he was a baby and everyone on his team has tried at one time or another.

Today we had to take a detour to the bathroom on the way to class and on our way we saw a drinking fountain. My little one feels the need to test out every fountain he passes so of course we made a stop. After little brother had his sip I decided to give it a try and ask N if he wanted a turn. He looked at it and only hesitated for a second or two before he took a sip of his own! Who knew I could have so many Birthdays in one year! This little sip of water has made me the happiest mommy every.

To top it off, when we went to his class and told his teacher, she was just as happy as we were and said she was going to take him to every fountain in the school so he knows where they all are. I had sent milk money in his lunch bag because they were going to try a milk carton with a straw today in the cafeteria after my sister thought of this great idea, but now if doesn't go for that we have a backup option.

This is the perfect way for a mom like me to start the day! Hooray for the new school year!

Why Sensitivity Training Should Be Mandatory For Airline Employees

Accepting people with different abilities is the wave of the future and the present. Gone are the days of keeping differently abled children and adults at home. I have recently read two stories that I wouldn't have known a thing about had they not been posted on the airline companies Facebook pages and then shared by others. We have all heard the stories of different medical needs being ignored or exposed which resulted in humiliated and mortified passengers but the insensitivity on the part of crew and staff  is escalating and we are now in a truly horrifying state.

Lives are being affected, in some cases long term, by airline staff and the choices they are making. They are choosing to uphold the company policy so strictly that they have long since dumped humanity and plain common courtesy. I would like to share these two stories in hopes of increasing awareness and of course as always reminding everyone to consider others when making decisions and assumptions.

I am pasting the original story I read on Facebook and then a link to the things that the airline is doing in response and of course a reprint of the story etc. It was horrifying to read it the way I did before anything was done to accomodate them. Most everyone is clear that action was taken only because the post went viral.

SAD STORY...

i witnessed today, what i consider to be the worst of humanity.

standing in line at an @alaska airlines ticket check in, in redmond oregon, i watched as a disabled/mentally and physically challenged couple were left standing in the front of a line by the ticket attendant ... who didn't say a word- no "final call, redmond to seattle"-- no "if you are flying to seattle, it's too late to make this flight," etc-- nothing.

when a different agent appeared 1/2 hour later-- the flight still had not left. i asked for a quick "side bar" with the new agent-- telling her that this couple needed some leeway-- some additional help. she quickly informed me that "we treat every single customer the exact same here"-- she was annoyed by my insistence and advocacy.

i tried to explain to her that her colleague had left the man and his companion alone, without saying a word to them. that they were "different" and that it would be ok for her to make exceptions for them (uttering something like, "exceptional circumstances sometimes require, exceptional responses").

(The attendant) finally agreed to try to get the man on the flight-- but he couldn't bring his luggage (ug).

he had a hard time walking-- no one offered him a wheelchair or asked how they could be helpful. he stumbled off toward the safety inspection line.

predictably, he didn't understand/comprehend their restriction of his luggage, and got stuck in security.

while this was going on, the ticket attendant and myself were continuing to have quiet words about how they needed extra help-- she told me that "i didn't know the whole story"-- that he had the "same problem yesterday, showing up late to his first flight."

i told her that i thought there was a real reason he was struggling to make it anywhere on time, and that this was cause for some compassion and some exceptions to rules, and some additional assistance.

by now i was fully annoying her. she had her rules, and she was growing tired of my moral compass.

security ended up sending the man back, telling him in the confusion around his luggage that there was no longer enough time for him to make his airplane, without the plane running late.

the original attendant ..., returned, and lightly shamed the couple for being late for the second time in a row, telling them there was no way the man could get to bellingham before 9pm now.

the man and woman broke into tears. his "nervous system hurky/jurkyness" became profound. he begged her to help him. nothing.

i asked tiffany to go on with the kids, that i wanted to stick around and advocate for this couple for the 20 minutes i could and still make my own flight...

i asked the man for his name. (He) he and his companion were easily 70 something. he was crying something fierce by now. i asked him what his condition was. he said he had late stage parkinsons, and that his companion had MS.

i asked to speak to the on site manager. (He) listened to me politely tell him the story about the man with parkinsons, and the woman with MS, and how none of his staff did anything to offer them additional assistance when it was clear to all 20 of us in line, how much they needed it and deserved it, and then he explained to me that the "laws don't allow alaska airlines to provide anyone, for any reason "special treatments."

i wrote that comment down, word for word. he responded by saying, "so great, you are going to take me completely out of context aren't you?" i said, "what other context is there?" i asked you why your staff didn't help these people, and, in that exact context, you backed up your employee who told me that everyone is treated exactly alike. he stood by this position.

the end of this story is sad to the core. after wrapping up with (the manager), i talked to (the man) for a bit longer.

this trip- redmond to seattle/seattle to bellingham, was allowing him to see his daughter one final time, who works on the ferry system and is out on the water for most of her time-- she was scheduled to meet him in bellingham at 3pm today. he said that it was a "bucket list" item that he could no longer realize. i asked him if she could get off the ferry and wait for him tomorrow-- and he said that she was only available for this brief time today-- that he was to join her on the ferry, and that otherwise she'd be out on the water for days-- his trip was done. he couldn't re-schedule. he was simply, now, in defeat, asking for his money back.

Here is the link http://www.ktvz.com/news/Bend-man-s-Facebook-post-sparks-firestorm-airline-action/-/413192/15970294/-/item/0/-/150hgx1/-/index.html

Many people that worked with the company were called in and he had already experienced this lack of humanity twice. I'm still sad for his experience regardless of how they tried to make up for it.

The next story is a bit different in that it is more personal to me but aside from that, it is a special needs teen who is just trying to get by like everyone else. Carly was required by a flight attendant to put her ipad away, even after explaining that she is nonverbal and uses it as a communication device. She told the employee that she is a frequent flyer and that she has always been allowed to keep it with her. The pilot told the flight attendant that it was fine and would not interfere with their systems but this employee insisted on sticking to her guns. While we all understand that for years we have believed that electronics have the potential to interfere with the airplane computers, the pilot was not concerned.

What upset me as much as the story itself were two comments that I read on Carly's Facebook page in response to her post about this story. One man said " paper and pen will do just fine." I don't even fault him for not knowing that Carly has difficulty writing due to her condition. Instead I want the man to wear a muzzle and duct tape during takeoff and landing just in case he feels the need to speak because, well like he stated paper and pen work just fine. The second comment was from a woman and she didn't make the comment I would expect which of course is regarding the ipad interfering with electronic systems and her rational fear of safety. No, instead she commented on the fact that she would rather not be smashed in the head by a flying ipad! Really? So not only would the ipad take flight instead of falling to the floor and sliding forward, defying all laws of gravity, but it would manage to jimmy it's way between the seat back, find her particular seat and bash her in the head. Now if that isn't ignorance at it's finest..

Here is the link to Carly's story. http://my-family-blog.net/2012/08/13/carly-fleischmann-nonverbal-teen-of-carlys-voice-made-to-put-away-ipad-during-flight/

I'm not suggesting that protocols are not put into place for good reason. Safety and order are a first priority. But just like any situation, there is always room to assess and make necessary alterations when a particular set of rules is not working in a case and the bending of a rule would benefit an outcome much more than hinder it. I look forward to the term "friendly skies" living up to it's name again in the very near future.

For now aside from the fact that we are about to take our special needs son on his first flight ever, I will stay as close to the exit rows of airline politics as I possibly can.

Rough Morning

As a mommy to a little boy with special needs, I sometimes forget that the rest of the world doesn't always get to know how amazing and perfect and wonderful he is. First, he looks like everyone else (probably cuter than many) and he blends in for the most part so until his social and speech delays come to the surface, many people don't even notice. His sweet and fun personality come through shortly after these delays show themselves but only certain people get to really experience how unbelievably amazing this boy really is. When I tell people how lucky I am and when I tell him every single night that I am the luckiest mommy ever, I one hundred percent truly mean it.

Having said all this, it doesn't mean that I am immune to the ignorance, lack of education on the subject and all out shortage of compassion that exists in our world. I don't believe that most people who say or do hurtful things, mean to come off the way that they do. Anyone that knows me, knows that my mission in life is to find the good in any person and any situation. Somehow though, it's easier to take hurtful things that affect you as a person than it is to handle things that affect your children.

In the past I have gotten comments from friends in my life (some who are educators) that range from "I didn't know he was doing so bad" after I had just spent 10 minutes saying how wonderfully he was doing, to the question of whether I had gotten a Flu shot while pregnant.  Just to clear up any future questions, I didn't eat Feta cheese and mercury based fish and whatever else was on the list. I had a perfect pregnancy and as far as I'm concerned, a perfect child. But I digress.. People are people and for some, the idea of doing what they think they can do to prevent having a child like mine is more important to them than common kindness. I only wish children like mine on special people because only certain people deserve the treasures that I get to experience daily. We work hard over here I don't pretend otherwise, but the love and rewards are wonderful and they come often.

So today I was simply taking my son for an eye exam so he can start school in the fall. The district is accepting our "inconclusive" result from prior exams but I wanted to try one more time. He knows all the answers but that 20 feet between his body and the eye chart turns out to be a very distracting 20 feet. I simply want to be sure before he starts school that he isn't straining in any way, for his own comfort. I told the front desk at my doctor's office that I wanted someone patient who could devote a few extra minutes to the process and they said they understood. They could not however predict who we  were going to get and as luck would have it today we got Cruella Deville.

She was snarky and sassy from the minute we went to the room and it was downhill from there. The eye chart has one side with obscure shapes and one side with numbers and letters. When we asked him to show us the objects he would easily point but had a tougher time verbalizing what he was seeing from 20 feet away. The kid taught himself to read at 3 years old so knowing the information was not a question. The nasty woman went from bad to worse as the seconds ticked by and my hope for a stress free and calm exam effort quickly went out the window. When I asked her if we could give him another minute to just take in his surroundings she snapped and said she had to go give shots.

She stormed off and I followed her to the common area where I was clearly upset and vocalized what was happening. I told the staff that we were very flexible in booking our appointment time and simply asked for someone who was patient who could help us get an accurate reading and wasn't in a rush. By now I was welling up and a woman who has always been great to my boys came and tried the exam again. The problem was that I was a wreck by that time and he was over it. I went into the exam not really caring if we got an accurate result but simply wanting to give it a fair try.I left hysterical.

I really don't get knocked down very often but for some reason this was such a significant experience. It just really hit me that if we can't get compassion and understanding in our own doctor's office, what is my baby to expect from the rest of the world?! Most everyone that meets him immediately loves him including typically developing children and we always have a wonderful experiences when we go to our pediatrician but this situation was a gross dose of reality that was just too much for me to swallow.

I can't force myself to believe that only people directly affected by a situation or that are in a similar boat, can have compassion for others. I think kindness is something that people either have or they don't. Not everyone holds doors for others or treats strangers with respect but in the support industry I believe that if you don't have compassion or kindness at your core, you really should choose another path. Skills and training are not enough. Just because you received your certification does not mean you are qualified.

This experience was a blow for me because I know my amazing son will be faced with ignorance many more times along his journey. The upside to this miserable morning though is that I am re-inspired to continue educating others and reminding people that just because they think they know what he has to offer does not mean that they have even scratched the surface. My son's teacher once said that they like to put diagnosis and details on the child's file to which I said please don't put any labels on our file. If they want to know my son then they are more than welcome to go meet him and get to know him! It is really time for everyone to realize that just because they are different does not mean that they aren't wonderful people, peers and friends. It may take a few more seconds of time and patience but the payoff is well worth it.

Special Needs On T.V!

Lately I have noticed that people with different types of special needs, seem to be all over television. The first example I noticed was a couple years ago on the show Parenthood. The main family has a son with Aspergers ( a form of Austism Spectrum Disorder) and they take the viewers through some of the real experiences that parents of special needs kids really go through. That was a fictional depiction but it was quite accurate and it felt great as a mom to see this being embraced publicly.

Lately I've noticed a couple reality shows that are either based on living with special needs or include a main character that has special needs. Push Girls a show on the Sundance Channel is a wonderful show that features 4 beautiful, fashionable women who are all confined to wheel chairs after suffering various accidents that paralyzed them either from the neck down or the waist down etc. I have watched this show a few times and it is beyond inspiring. These women are living typical lives in most ways and are fulfilled and happy.

Another show called Barter Kings features two men who own a store and make their money by trading goods for higher value items. One of the partners is a guy named Antonio who is good looking and hip. He  has a wife and 3 children and he also has Tourette's Syndrome. During the episodes he often gives little tid bits of information about Tourette's like "people think that Tourette's means you swear all the time, I just get attached to certain words and keep saying them over and over."  He is such a cool guy and while he has verbal and physical ticks here and there, he makes his special need an extremely minor part of who he is. I'm certain it is something he deals with everyday but he not only has educated the public, he is an amazing reminder to moms like me that special needs do not have to get in the way of success.

Children and adults with special needs are becoming more accepted and integrated everyday.  Community theaters like Sterling Civic Theater in Detroit, are including special needs children in all of their productions and certain cruise ship lines are even advertising their special needs theater inclusion programs.

It is wonderful to see the special needs community featured in front of a large audience to not only educate the public but to inspire us as well. I have always been excited to see what my little boy will grow up to become but shows like this prove to me that he will have no problem achieving success.

It's Like Winning the Lotto!

My little man has been in feeding therapy for about 4 years. Every therapist we come across says the same thing, that it's much easier to help a child overcome obstacles with gagging and choking on food than it is to ease them through the process of getting over fear and becoming less stubborn and more open to new foods. He has been eating American cheese for about a year and it took two Occupational Therapists well over a year to help him do that so we don't expect quick results, ever.

For the last couple weeks I have been going into the room during the feeding portion of his session and bringing my 3 year old in as well. He too is picky in other ways so we thought it could benefit them both to see each other eating and trying new techniques. It has been good so far and today was absolutely wonderful. Each week his therapist who we adore, offers him string cheese and she does everything from making rain out of the shredded strings to splitting it in half and making it an alligator that eats his other food. He does play with various foods including this, but doesn't eat them. Today while we were sitting around the table he was playing with the first string he pulled off and out of nowhere he just put the remaining stick of cheese in his mouth and took a huge bite. He then proceeded to not only finish his entire piece but took the piece his brother wasn't eating and ate that too! I just sat there with my eyes wide open. His therapist looked at me and told me not to react and not to scream and jump for joy so I just sat there smiling. She stayed calm and just told him that he could eat that at home too and that he likes it.. I felt like I won the Lottery!

Day in and day out we work on certain challenges. The last few steps of potty training that seem to go on forever and the ongoing worry that he isn't eating near as many food options as he should be. This was a huge step because not only do I have one more thing to pack in his lunch next year but it will also lead to yet another food that we can introduce.

We have an intense summer with a packed schedule and endless running from camp to camp and therapy to therapy. This break through today made all of the extra efforts and the stress that comes along with it, WELL worth it. It's just cheese I know, but to me it's the best gift, a pot of gold and a winning lottery ticket, rolled into one. A great day for us!

A Special Needs Moms Biggest Fear...Realized

Everyone worries about their children whether they are typically developing or have special needs. I know first hand as I have one of each myself. The difference with having a special needs child is that you always worry that the people who are supposed to be watching them at a given time, won't know the extent of their needs and they could end up slipping though the cracks. We have a wonderful team and we don't go out without our kids very often so aside from therapists, family members and teachers, we don't have that many people watching our son that don't know everything they need to know about  him.  Our son is amazing and for the most part he is very easy going and easy to care for but you do have to keep an eye on him because he will follow a crowd on occasion not realizing that he isn't supposed to be going where they are going.

Yesterday he started a new therapy camp program that we have been researching for a few years. We finally decided to enroll this year as it's a little bit intensive and we felt it would be perfect right before he starts Kindergarten. His first day went very well and we really like his teacher however we haven't had a chance to meet each assistant as they   alternate depending on where they are most needed. Today I went to pick him up and unlike yesterday when I arrived 5 minutes early to watch the class, I arrived exactly on time. I went in the front door into the lobby and as I was about to walk into the waiting room the door opened and a mom and her 3 kids walked out the door... and my baby walked out too! I was shocked to see him but wasn't worried yet because I assumed his teacher was in the waiting room and had seen me come in. When I walked in the room all I saw were a few kids and their parents but none of the teachers or staff.

I walked him down the hall to his room and his teacher was on the phone dealing with a situation with another child and the assistant was just standing there. I asked her why in the world my son just walked out the door and asked her if she realized what could have happened if I had not walked in at that exact moment. I don't even want to think about it but all I can say is that just beyond that door that I caught him at is a tiny sidewalk and then a huge parking lot. The family didn't know he was following them so he would have been outside all alone. I can't let the thoughts go further than that but I am horrified.

The assistant didn't act shocked or sick she just kinda said sorry and told me he had a good day when I asked. The teacher was sort of frantic in her own situation so she had to rush off but before she left she said I'm not usually on the phone I'm dealing with another parent. I said I don't care if you are on the phone I just want to know why no one was watching my son! We left and got in the car but I was not only seething mad but simply sick inside.

I called the front desk from the parking lot and left a message for the director, with the receptionist who was also sick about what had happened. I got a call back about 20 minutes later and she reacted the way I had hoped she would. She said that the staff was waiting for her after her meeting so that they could tell her how they had messed up. After she gave them a long lecture they created a new protocol and will be implementing it starting tomorrow and going forward. They will have yet another staff member be on duty at pick up time to stand by the door and wait for each parent to arrive and get their child.

All kids need to be watched and I would have been a little upset if my other son had been in the wrong place but the difference is that he knows where he is supposed to be where my older son often sees his friends going somewhere and likes to follow them.  I'm really a non-alarmist and have been contacted by the schools many times about little bumps and bruises and I always say don't worry if they are happy now they are fine. I don't react strongly and I know and understand that we are human and things happen. This though is so different because the ending could have been so horribly different. What if I didn't show up the exact second that I did? What if I had pulled in and he was standing outside on the sidewalk or in the parking lot? Or.... worse? There are 3 teachers to watch 7 kids so even though they may need a bit more attention it is still a great ratio and should not be a problem.

The director apologized and explained how upset she was and that everyone was aware of how serious this was and ultimately could have been. I'm slowly letting it go but I still feel awful and it is hard to take my baby back to a place and trust that he is in good hands after this. I'm a little uncomfortable but I know they will use their new plan from now on and I know this is the right program for him. This is one of those days that a special needs mom dreads the most. I hope tomorrow is much better.

Special Progress

At the beginning of our journey I remember comparing my son's development to the development of other children around me. I was at a little play class and noticed a much younger boy playing with a toy telephone. He was having a pretend conversation and I remember thinking how we were nowhere near that type of pretend play. That was how we would measure progress. We knew the range of normal and between comparing to the charts and comparing to other kids, we were always glaringly aware of our delays.

Today on this Memorial day morning, my amazing boy who makes progress every single day, came over to me for a little snuggle session. He happened to be holding a red block when he came over so we turned the block into glasses, a hat, a shoe and then HE wanted it to be a "mouth and teeth." After a few minutes he was chatting with his dad on his pretend red phone and saying hi to his Mammy!

As if that wasn't enough goodness for today, he then went upstairs to where his daddy was sleeping and told him "I want lunch." He didn't actually want lunch but I had just told him we were going on my sister's boat at lunch time and he is so excited so wants it to be lunch time now! I would say that was pretty amazing.

Love watching this boy do his thing!

Rough Night-Why the Open Forum of Facebook Isn't Always Good

Phew, this is a tough post to write. Facebook has a feature that allows you to view the posts of people that you don't know, if a friend you have in common has commented on the post. Last night I happened to see a comment and the conversation was so striking that I couldn't look past it no matter how hard I sat wishing that I never had stumbled upon it.

The post was written from a profile with a woman's name and photo and info that stated that they were a human rights attorney. The post read " What is with all the special needs kids in the regular park. I thought they had parks for them." There I was settling into bed for the night and suddenly my blood pressure was through the roof. There was a string of posts and responses that had started the night before and they were all along the same lines. The comments were graphic and deep and horrifying. This person was making comments about children drooling and how parents of special needs kids are so proud of their kid for just sliding down a slide. They talked about the poor service staff they have experienced in public places and compared them to special needs individuals. The posts went on and on and they were hard to handle.

A friend of mine thought it might be spam but when the person was responding to the outraged posters they knew personal things about some of the people. The process went on for hours and it was super intense. They were just such extremely harsh words and the person kept digging deeper with each reply. Later, a friend of mine said she got a private message from the person saying it was all fake and they had done it to start chaos. It became clear over time that it wasn't a woman writing these things and it was later confirmed that it was a guy doing the posting with a fake profile.

I tried to get over it and settle down. This wasn't just the special needs, mama bear reacting this was a human reacting. These were the most outrageous words I had ever seen and they cut to the core. The post was deleted but I couldn't let it go. I sent a message to "Him" and the life coach in me came out not too long after my initial negative approach. He said to me "It's all fake" I did it to prove a point that this would get around the community in minutes and I was right. He said just as I had thought, my mother called me by 9:45 pm asking me if I knew this girl. All the women were talking to each other about this horrible person. He told his mother he knew her. He did not tell her that he was her. I told him that he should, she would be so proud.

I explained to him as calmly as I could that it was not fake because the words that he said were real. The thoughts he had came from somewhere and that we would take OUR special needs 100 times, over his special needs.  He was cruel. I will spare you the full details of his comments but my gut continues to be in knots over the fact that someone could form these thoughts. I told him that he should tell his mother that it was him and that he can tell me all day long that it's fake but that when he goes to bed tonight he will know that he did wrong. He hurt people, he was insensative and he chose the wrong path to prove his little fun project. This was wayyyy beyond an episode of "What Would You Do?"

During this email conversation I felt like I was talking to a young and immature boy. We still don't know who he is but for his sake and ours I do hope someone comes forward and says they know him. I wish I could let it go but it was too much. He told me that he volunteered for 3 years at a therapeutic horse riding facility with special needs children. Still can't put into words the horror I feel over that. This person is living a double life if they can do that by day and say these words by night. This was a situation where you know you aren't getting through to a person and you shouldn't bother debating the facts but I do feel that he knows loud and clear that he is a person who is very much lacking.

I went to bed so late and was so drained when I finally did. I can't believe the time that he had on his hands to create a fake profile, recruit several friends and proceed with this hoax. He told a friend of mine that he would soon shut down the profile and start another fake one. This is the exact situation in life where you remind yourself that you can't change people but can only change the way you react to them.

This situation took a toll on me. I think any minority he had chosen to insert in the ploy would have hurt me. Hate is a hard one to swallow and I spend my life trying to share goodness and show others the bright side of life. This person could not be shown. I did tell him that he should surround himself with the special needs community as soon as possible because he is missing out and that I would tell The Friendship Circle to expect a large donation today from him as an apology for his ignorance. Hey I can dream right?

It's time to find a way to let this experience go. One thing I know for sure is that if I am ever faced with the person this truly is, not the coward who hid behind a fake profile, he will walk away after his time with me, with a very clear understanding about the shallow life he leads.

Time to sip my coffee and try my very best to get my mind back on the right path. Amazing how things online can knock you so far down. Lucky for me I have the most amazing hubby and little boys who make me smile everyday.

I also want to take a second to say that the people who read this trolls posts, were the kindest and most supportive friends you can imagine. Everyone should go to bat for the cause of others. There really is an upside to everything.

His First Question!

I have often said that my 5 yr old is kicking the butt of his developmental delays. He still has a journey ahead but he makes gains constantly and we could not be happier. Over the last 6 weeks he has made great progress and we are loving every minute! We credit a combination of his long term therapies mixed with a newer treatment that we added. Our little man has started talking more and has been taking the tons of words that he already knew and is combining them into sentences! Last week his favorite toy in the world, his ipad, died before he was ready to be done playing with it. He came over to me because he was temporarily out of activities so we were snuggling for a minute. All the sudden he looked up and asked me  "where's the Kindle." Ha! When this kid is motivated he can do anything. I have never been so happy to hand over an electronic device. It was the best glimpse at our future and a reminder that soon we will be able to carry on full conversations with our baby boy. He does answer questions and he has been stringing words together more and more. We love the progress and will not soon forget his very first question!

Proud and Inspired

As the mother of a special needs child and just as a mother in general, this story is all you could ever ask for. abcnews set up a scenario with an Autistic child played by an actor quite well if I do say and they hit a cafe. Here is what they found! Ever inspired I am :)

Click here

Role Reversal

Just before my older son started his early intervention classes and therapy, his receptive and expressive speech delays were so severe that even when I would tell him "let's go bye bye" he would just stare at  me blankly. People would say "don't worry, he will talk" but I would tell them that it wasn't the speech or speaking delay that bothered me as much as the fact that he had NO idea what I was saying. I learned how to simplify my words so he could better understand me and I started shaking the car keys so he knew it was time to go.

 Here we are 4 years later... Yesterday I spent the morning repeating everything I said to my younger son at least 7 times. He just was not in the mood to listen and would sweetly tell me no mom I'll do it this way, (We tell him daily how lucky he is that he is cute). At one point he came to me and told me that his big brother had climbed up on the dining room table and was sitting there playing his Ipad (as if he doesn't do this once a week, himself) and that he could fall. I stood up right where I was, looked over and called to my son and asked him to please get off the table and sit down. AND HE DID!!!  My first time asking, from 2 rooms away and he not only understood but happily complied.

I was very happy. I then instantly turned to tell little brother that in a million years I never thought that he would be the one I had to ask to do things 7 times and that big brother would do it after the first request!!

Early intervention works. My hard worker is chugging away at his mission and is clearly succeeding :)

Ever Grateful for Support

I have said many times that our son has a wonderful team of teachers and therapists and we know every single day how lucky we all are to have such devoted and talented professionals on our side.

 Each year in school there is a IEP meeting (Individualized Education Plan) and then every 3 years there is an assessment meeting that probably has a fancy name but I don't know what it is. Anyway, we had our 3 year assessment this week and it's always a little hard because while you know you are meeting with many of his supporters, sometimes it's not easy to look at the things that he isn't quite doing yet. I admit that I dreaded the meeting a tiny bit but from the minute we got there all of that worry went away.

We sat at a table filled with speech, occupational and physical therapists. Our son's teacher and the social worker and psychologist. He doesn't work with all of them generally, but some had done the evaluation that we were receiving results for so they were there to share their findings with us. I truly have a wonderful relationship with his teacher and the rest of the team and this is super important because things tend to creep up when you're in a situation like ours and support and communication are key.

For example, this year our district is closing 2 schools which actually shuffled tons of students around, so at the suggestion of someone on our team, I sent an email to the superintendent asking him to keep the special needs families in mind when he was making the big announcement about which schools all the students would be moving to.I was worried that they would make us wait longer than the rest of the district when they shared where everyone would be going to in the fall. It was a short, sweet email and I didn't need or expect a response. To my surprise, instead of a simple email reply, I  received the kindest and warmest phone call from the superintendent himself assuring me that we would be included in the big announcement. He did not disappoint as 6 months after our call, last week, he was sure to make our classes known at the exact same time as the rest of the district.

Recently we experienced a small bump when my husband and I felt that there was a slight conflict with one of the therapistst that was assigned to perform this big evaluation for our son. We don't work with her so it doesn't usually come up but when I was told she was going to be on the team for this I was a little uneasy. It was nothing major but trust is extremely important to us and I just didn't have that with this team member.

 I would say that within a half an hour literally, of expressing my concerns to the teacher she had gotten in touch with the director of special education and a new (and adorable if I can say) therapist had been assigned to stand in. This was done without even a touch of drama and we are sincerely grateful for how smoothly this went down.

So in addition to this wonderful team attending the meeting, we were humbled to see that the director of the special needs department for the entire (huge) school district had come to observe our goals as well.  I have a different perspective than many parents, I think, and I also am a sweet but outspoken advocate on behalf of our son so I believe she wanted to meet us in person and I loved hearing her personally offer her support.

The goals didn't change a whole lot because we just met with a smaller group this past October but it was truly amazing to look back at where we started and see the progress our little man has made since he started his school journey 3 years ago.

There are up's and down's for sure but having a team of supportive professionals rooting for and appreciating our baby is all we could ever ask for. We are sad to leave some of the team behind when he moves to a new school next year but we are forever grateful to have worked with them and our friendship with each of them will continue for sure!

We know how lucky we are to have such a sweet and amazing son and we know how lucky he is to be supported by some of the very best in the business!

Love and gratitude!

Wow. Glad I Caught Idol Tonight

I don't watch American Idol generally. Tonight I watched it for a little bit and while all the little stories and successes are wonderful, the last clip on this episode pretty much said it all. As a mother of a special needs child, I live everyday full of hope for my son and know that his future will be bright. But still, worry is part of this game. Tonight a man auditioned and told his story of how he was born with no ears and that as he got older he was able to have surgeries to allow him to hear because he did in fact have ear drums etc. His family waited outside the audition room and his father was weepy as he waited. Every parent wants their child to succeed but this dad was coming from a very different place far deeper than a place of hope for a golden ticket. After the man sang his beautiful song and came out to show his family his ticket, his father was pretty much balling in the background. He said " I remember when the Doctor said "he won't speak, he can't hear he's not well.".. "Now I am happy." I of course lost it at this point because everyone loves a success story but really I'm thrilled as a special needs mommy to see the unbelievable miracle that I was able to see tonight. These kids are amazing and it turns out, they become amazing adults too!

What a Team Means in Our World

I had a reflective moment today and it was regarding the type of Developmental Pediatrician we went to back when our now 5 year old was only 15 months old, and how if he had been any different than he was, who knows how our path would have unfolded. He was supportive and positive from our very first meeting and I truly believe that he helped shape the course for us because of this outlook. We happen to be optimists so I think that even if he had been a downer, we would have resisted following that lead because of the type of people we are. Having said that though, the early intervention journey is a draining one at times so the more positive and optimistic people you have on your team, the better. As we started meeting therapists and forming our team we made sure to keep people with similar attitudes with us. Now after 3.5 years we have formed an unbelievable team full of supportive and hopeful members who care so completely for our son. His teacher for the past 3 years has done so much more than I will ever be able to thank her for and just today when she had to go to bat for us yet again, she did it without giving it a second thought. As always she got the exact result we wanted. Each therapist we have works so hard every week to help our son progress and they are as excited as we are when they see the results of all of these efforts. We are so beyond lucky to have the team that we have and not a day goes by that we don't appreciate each and every member!

Go Team!



 

 

 

Up and Down

For the first time since we started our therapy/intervention journey 3.5 years ago, we took a true break. Every holiday break we still continue with therapies so there isn't regression and to keep the little man on somewhat of a routine. During this holiday break we took the two weeks to just relax and enjoy. We kept one speech therapy appointment because she comes to our house and it was easy enough so he met with her two times and an OT student who used to be his shadow at a typical preschool, came one time to play for an hour. Aside from that our routine went out the window. It was actually kind of nice to just relax at home, go to bed late, sleep in and spend time together. I always joke that I'm "greedy" when it comes to my son because every time I want a milestone to come so badly, by the time it comes, I'm so anxious for another that I recognize that the old goal has been reached but still it's on to the next. At one time I just wanted him to say "hi" and now I want him to master potty training which by the way,the fact that he hasn't yet is completely his choice. He just can't be bothered but knows exactly what he is supposed to do and will do it when he told but doesn't care enough to initiate it on his own. I have "hi" now though, all the time. No prompt required, if someone says hi to him he says hi back.. it's the best.. but here I am focused on that potty thing ;). So over this vacation we have had up's and down's because during the entire first week at home, potty training completely regressed. He was loving his free time so much and the fact that for the first time since he was 1.5 years old, he didn't have to be somewhere at all times. He finally got control of  the bathroom deal again during week two (phew, I thought hubby was going to jump out the window ) and even had some great gains while we were home. He started saying yes and no consistently which again he knows how to say and do everything but it's getting him to do it on our terms. So overall vaca was a great success. Slight regression and major verbal improvements. I was so excited for this time with the family, with two days left of break I'm starting to get pretty excited to get back into a routine again. Up and down, that's the way the special needs road goes.