And the search continues.....

So the last few weeks we have been searching for a caregiver for Wesley. When he turns 13 daycare's in the state of Florida will not take children over 13. I get that in a normal situation. But this is not the norm. None the less, I am not going to be able to change the law in Florida.

I was so excited, I placed an ad on www.care.com. I got so many responses. Everyone was so nice, I thought how in the world am I going to pick. Well then it came to the in person interviews. NOT ONE SINGLE PERSON has showed for their interview. I had one set for everyday this week and they have all either no showed with no explanation, found other positions (I understand) or cancelled.

I begin to wonder am a too honest on the phone with them that I scare them away! I have always told anyone who cares for Wesley the GOOD, BAD, AND THE UGLY. (see Trish it keeps coming up) I don't want them in over their heads. I want them to love him and care for him for everything he is. EVERYTHING! So I leave nothing out! I don't want Wesley to feel unloved or afraid if this person is not the right fit.

Then I start wondering...WOW...this really is a big responsibility. I don't think it is because its all I have ever known. Taking care of a special needs child really is hard and it requires someone special to do this job. What no one knows is.....It's not that overwhelming. My best friend said to me today, "I would rather watch Wesley then my own kids". Not that she doesn't love her kids.But she knows him. If these caregivers would just give him a chance rather than just hearing the words "Down syndrome".

So the search continues and we have do have an "Ace in our Pockets" and we meet her this weekend. I pray she is the right one. Who knows maybe all this happened to show me that my "Ace" is actually an "Angel".

Happy 30th Birthday

Yesterday was my 30th birthday. I wanted to Kareoke.....I have never done that a day in my life. So being it was the big 3 0.  I thought it was the perfect time. Well my family and friends put together a party at the house.....that included Kareoke!! We had a blast. The best part was I was surrounded by family and friends as I "performed" "Bitch" by Meredith Brooks. One of my all time favorites. I am sure I was terrible. But when I was all done. Wesley yelled...."Good Job" and gave me a thumbs up. He was so proud of his mom! For a moment the tables turned and he was cheering me on! I wish we would have gotten that on video! He also sang for us.....He is a born ROCK STAR!!!! You put a microphone in his hand and he goes to town!!!!!

I also "performed" Wonder by Natalie Merchant. This song was one of my favorites when I was younger and after I had Wesley it really hit home for me. Its such a wonderful song. I could bearly get through the song without breaking down. If you haven't heard this song before you should listen to it!!



Verbal Apraxia in Down syndrome

Wesley was diagnosed with Verbal Apraxia in Mid 2009 . Though I should be used to all the diagnosis, challenges, and struggles it still felt like a kick in the teeth!  At 10 years old my little guy wasn't talking. I knew that each child with Down syndrome had their own set of challenges. That not every child would have the same issues. But it still frustrates me when another challenge is put in front of him. So as a parent, you do everything in your power to make it easier for them to succeed. My way of coping was to learn as much as I could. I went into research mode. I had to know everything there was to know about this condition.  I Googled, I YouTubed, everything I could possible think of. If I found a term or therapy I didn't understand I would google that too. Until I had a clear understanding of what we were facing and what we could do to make the best of the challenge we were facing.


So almost two years into our journey here is what we have learned:

• Verbal Apraxia is a speech disorder where a child has trouble saying words they want to say correctly and consistently. Our SLP explained it like this: The brain tells Wesley what to say but the signal the tells him where to move his lips and tongue to say it goes haywire. Thus he can't say the word.

• Verbal Apraxia is also know as Apraxia of Speech, Dyspraxia, and Childhood Verbal Apraxia.

• Things we should have been looking at long before Wesley was diagnosed were his inability to put sounds together in the correct order, inconstancy in his attempts to say the words correctly, difficulty with longer words, slow rate of speech, omission of sounds, and the one that we knew about the longest and had no idea that is was a charaterististics of Verbal Apraxia was is expressive language was far lower than his understanding. In other words he knew exactly what was being said and what was going on but he could not effectively tell us what was on his mind. This in itself caused several behavioral issues. He was frustrated that he couldn't communicate to us what he wanted to say.  

• The key to success in treating Verbal Apraxia is PRACTICE, PRACTICE, PRACTICE! The harder we work at it the better Wesley does. Consistency is Key! No matter how many times you go to speech therapy each week you should practice at home too. Of course the more severe the case the more practice you need.

• Augmentative communication also know as alternative communication is very important! This can consist of sign language, picture system, voice output system or combination of all of these. This bridges the gap until the child learns to speak clearly and be understood. Imagine what it is like to know what you want to say but are unable to say the words. It would be frustrating! If you had a way to say what you wanted or needed to say it make your life a bit easier. I have also found that for Wesley if he learns the sign he learns the verbal word easier. He makes the connection easier when he learns the sign.

As we continue to use all of the techniques to help Wesley succeed, I hope you find some of this information helpful. From our journey to yours....we wish you the best of luck!

The Good, Bad and the Ugly

Its been awhile since I blogged! I really do have a lot to say! I have just been to busy to say it. It really is a roller coaster ride these days.The Good, Bad and the Ugly! Wesley seems to be having more good days than bad days lately. In all aspects of his life. He had tubes put in his ears a few weeks ago and I really do think he is hearing better. And his speech seems to be progressing better. The ENT says that its due to the tubes. I hope we continue to see such remarkable progress. All of Wesley's life I have been so excited for the day he would start talking. He is using his words more than ever now! Though it is still hard to understand it is amazing to hear. He is copying more words these days too. His newest word is "WOW". Thanks to the newest member of our house. (Samantha, Abe's little sister) It really is exciting to hear his voice!

Wesley started summer school last week to at his new school, Crest. Crest is a school for children with special needs of all kids and all ages. He is going into the 6th grade this coming year and with is small size and limited speech, we didn't feel middle school was the best choice for him. I was terrified of the things that might happen to him. Even in the 5th grade we were having some of the kids showing him not good things and laughing when he got in trouble for doing or saying those things. Things they knew better than to show a little guy who does not know any better. So Wesley will spend the remainder of his school years at Crest. It was one of the hardest decisions we have had to make so far. We want what is best for Wesley. We had to decide what environment we thought he would make the best progress in. Crest really seems to be that place. Time will tell! It seems in life you have to make the choice you THINK is best only to find out later whether or not it really was the best choice. Use your head, follow your heart, and listen to the wisdom around you. It doesn't hurt to add some prayer into that as well.

As special need parents we don't always have the answers. There are no books to tell us exactly what to do next. We rely on our families, our friends, our doctors, and our fellow special needs parents to help us navigate this road. They laugh with us, cry with us and all the emotions in between.

First Day Fiasco!

So today was the first day back to school for both my little guys! Memphis getting ready for first grade at his same school. Wesley getting ready for fourth grade at a brand new school! Now I am nervous to begin with because this year half of his day will be mainstreamed with "typical" fourth graders. This is what we want for him, but can mom handle it. Kids can be so mean. My stomach is in knots about our first day. He has been to this school one time before, Thursday for Open House. Well our nanny gets him on the bus and sends him on his way. She calls me to let me know he did not have an aide on the bus. No big deal, right, just feel sorry for the driver who has to stop 300 times to have Wesley sit down in a seat, any seat! Wait, that aide is suppose to get him to his classroom. He is going to get off that bus and have no idea where to go. Wesley isn't very verbal either. He can't tell anyone what his name is. As a mom, I hit hysteria. OMG, what are we going to do. I am an hour away from his school, at work. By the time I get there it will be to late. I am calling any and every person that will listen to a hysterical mother rant about her child with special needs that is going to get lost when he gets off the bus. Eight plus phone calls later, everyone under the sun knows Wesley will not know where to go when he gets off the bus. The ESE department calls me at work to let me know they have gotten the message and they will have someone to direct him to his classroom for his first day of fourth grade! And that they are working very diligently to get an aide for the afternoon ride home as that should have been the case to begin with. Now that I can breath again, I can continue to worry about how nice or mean the other kids are going to be to him. I think he will do wonderful in a mainstreamed environment. If there is one thing Wesley is, it's social! God help us through the rest of the day!

Ties That Bind, Connections In The Down Syndrome Community

Every one of US has been there......at one point the Doctor says those words that change your life FOREVER! Whether it be while you're pregnant, at birth or even months later. Your child has Down syndrome or Trisomy 21. Little did we know how those words REALLY change our lives. At first you don't know what to do, lost if you will. You are just trying to figure it all out. How? Why? What do we do now? Your head is swimming with questions and with information. Then it happens....That first connection, the first person that gives you comfort or insight on this life you have just entered. It could be a nurse, family member, friend or even a stranger. Little do they know what kind of impact that person will have on you for the rest of your life. It's the first step to the rest of your new life.

For me, it was my mother-in-law, (who has a child with Cerebral Palsy) saying to me as I weep in my hospital bed, "it all happens for a reason". Brings tears to my eyes as I read those words today. Those are words you hear all the time, I know but that day; it's what I needed to hear. As the years have past this has happened time and time again as we have traveled this new path given to us. We have met some amazing Medical professionals, families, friends, and strangers! Each one just as important as the next.

Our family albums are full of the usual stuff, family gatherings, birthdays, weddings. But as you look through our albums you will see what look like complete strangers. But to us they are far from that. Some have titles others do not. They are the many physical therapist, occupational therapists, speech therapist, cardiologists, nurses, teachers, aides, ESE Specialist, Coaches, other families (not in order of importance). Each of them saying or doing something a little extra, helping make this new path we travel a little brighter and happier. Having such an impact on Wesley's life or ours, far more than they might ever know. People our family have became so familiar with that we all know each other on first name basis'. That we have spent so much time together that they have been "pictured" in our families life. These ties BIND us for life. Even if they are not in our life forever. They have left a connection that will always be there. Wesley in almost 10 years old now and that list of ties is continuing to grow everyday.

The most resent tie for our family is CJ and her Traveling Afghan Project. Check out this unbelievable act of kindness and dedication for friends and strangers alike. http://www.thet21travelingafghanproject.com/ We are super excited about being a part of this experience. Again, a stranger (not so much anymore), has made an impact our path know as Down syndrome, helping make our path a little brighter and happier. And again pictures will be added to the family album.

T21 Traveling Afghan.....

I have to say I am totally excited about this project. If you don't know what it is click on the link to the side or go to www.thet21travelingafghanproject.com. I am glad that our family will partake in this experience. I am probably more excited about it than Wesley is. Who know's when we will recieve it but that will be a fun day when we do. If you have a friend or family that has family member with Down syndrome, please pass along this message......