Wesley has Down syndrome but Down syndrome does not have him! He is a son, a brother, a nephew, a friend, a pretty awesome "shake your groove thing" dancer, a singer, an artist, a teenager, and an all out boy who happens to have an extra chromosome.
Why March 21? Its the 21st day of the third month...It was selected of course to signify the third copy of the 21 chromosome, which is the cause of Down syndrome! This World Down Syndrome day will mark its 8th Anniversary. This year the IDSC, a grass-roots non-profit group has joined in the celebration and challenged all the bloggers out there to blog today and help spread the word!
So today WE will not just celebrate Wesley! WE celebrate all the Wesley's out there! And of course not just today but especially today! We want to show the world that their lives have meaning! We want the world to truly value, accept, and include all the individuals with Down syndrome! We do this by not using the R-word, welcoming and including those with Down syndrome into our schools, communities and workplaces, and last but not least advocating for the individual's with Down syndrome! This can be as simple as sharing a link, photo, or video promoting awareness to Down syndrome, wearing your blue and yellow ribbons, or as dedicated as rolling up your sleeves and helping individuals and families with Down syndrome.
So today we wear our Yellow and Blue and our Crazy Socks!! In hopes that someone will ask "What does that mean?"
Grumpy....Moody.....Mouthy......I know that describes just about every teenager...but in our house there is an extra chromosome to take into consideration! Wesley is normally a loving, easy going kid who's smile lights up a room. But as with any puberty ridden child....that fades away and transforms into a huge ball of hormones! Of course we still see that loving,easy going kid every now and again...but the visits are fewer than we would like....so that inspired me to write a blog to help all those mom's out there get through those years. Here are my top 5 tips....
1. First and foremost....don't lose your sense of humor! You may want to cry right now but I promise tomorrow, next week or even a few years from now you will laugh about the situation you are in! There is nothing fun about hair growth in unusual places with Wesley, who can't even stand a tag in his shirt...but you and your child must learn to manage these changes and make the best of it....for me it was learning the hard way to make sure my razor is not left in the shower when Wesley gets in. Luckily he did not cut himself (I know) and I caught him before he got rid of too much hair!
2. Take Time for yourself. You are no good if you are running on Empty! It may be something as simple as a hot bubble bath, a trip to the grocery store by yourself, or a nice walk on the beach! (Yes I'm in Florida and that's as easy as going to the grocery store) But the important thing is to find something to recharge you batteries! For me I try to take a hot bath, have a girls night out, or run an errand by myself to give me a break! I don't have the luxury of a long break but even a minute break once a week is better than nothing.
3. Make special time for you and your child. It can be a elaborate as taking him to Disney just the family or as simple as sharing a jam session in the car with your child. Do something that your child likes! Anything just do it together! Wesley and I spend Thursday morning together riding to speech and then to school. Most mornings we jam to Big Time Rush. That is a special time for us and me make ton's of memories and laughs!
4. Connect with other parents with teens with Down syndrome (or your child's specific disability) They are a wealth of information! It's OK to Google and to research. But I have found more comfort and tried and true advice connecting with mom's who have been there or are there. Find a local support group! The National Down Syndrome Society has tons of links to local support groups! If there is not one, then start one! Facebook also has tons of groups with real people going through the same things you are! I have had the recent experience with some wonderful mom's sharing with me the tricks and tips that are working for them and have already started implementing them into our lives! Just being armed with their knowledge gives me strength! Even if just to vent about the situation. (Don't dwell on it though, that's not good, just get it off your chest!) But don't just vent about it...ask questions, ask for advise, ask for strategies...Then you are armed with knowledge and experience beyond your own! What more could you ask for!
5. Last but not least, REMEMBER your teenage will come back around...as Phil and Claire Dunphy put it in their most recent episode of Modern Family...Haley, their teenage daughter found her way around the "dark side of the moon" of teenage-hood and wanted to be "cool and friendly" with her mom again! Just remember that....this too shall pass! It's just a phase! It's normal! It's just a part of growing up!
I hope this reaches and helps someone out there who was feeling like I was and you take to heart these tips! Yes, you Welcomed Holland but that doesn't mean you don't need help and encouragement along the way!
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".
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!!
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!
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.