Thursday, April 2, 2015

Brady's beautiful voice

Brady spoke a few purposeful words until 12 months - Mama and ball I remember vividly. And then I didn't hear his voice again for 3 years. As he was approaching age 4 I wondered if I ever would. But then Brady found his voice again, slowly but surely. And once he got going there was no stopping him! He sought out his favorite books and favorite songs. He filled in blanks when we paused our words. It was a dream come true. But the amount of work that little boy put into getting his words...wow. He started speech therapy at 15 months old and he continues to this very day. He started at once a week and then twice a week. Once we had enough funding in place he started doing speech therapy 4 times per week and that is what he continues now. He works SO HARD every day. Sometimes that breaks my heart, that he has to work so hard for language and other skills that come so naturally to typically developing children. But then to see the growth. It is astonishing. It blows me away. I want to show you just a tiny little peek at just how far Brady's speech has come. The first video is Brady reading his then favorite book "Chicka Chicka Boom Boom" years ago when he was 5 years old. He is beyond adorable, but his speech is still new and pretty difficult to decipher. In addition to autism, Brady also has speech apraxia which makes it difficult to understand his speech. This is one area that Brady continues to work on his speech therapy. The second video is just last week at age 9 reading a portion of the same book. You won't believe how much more intelligible his reading of the same book is! Brady...you blow me away every day :)

Wednesday, April 1, 2015

April is here

I am aware. Every second. Of every minute. Of every day. I am aware of autism. I do not need April to remind me about Autism Awareness. I see my boys struggle for communication and social skills every day. But I will use this opportunity to share, inform and educate others about autism. More specifically, I will share how autism affects my family. Tonight we changed our lights to blue outside our home. We didn't do this in celebration of autism. We didn't do it to support the national autism group who started LIUB. But we lit our home up blue because this could inspire one adult to learn more. And that could help one child and one family. And the possibility of helping one single beautiful amazing child who has to experience the struggles my boys do...well that is worth a million blue light bulbs. I plan to take you on a journey this month of what life looks like for my family. I plan to share some of the struggles my boys experience. But even more so I hope to share some of the obstacles my amazing boys have overcome. Come take a ride with us this April. I promise you will laugh. You will cry. You will learn.

Tuesday, April 1, 2014

Progress reports...it is love/hate.

Progress reports. It can be a love/hate relationship. Every time they come home I think "This will end in tears. Will they be happy tears or tears of disappointment?" My boys' progress reports came home over spring break and I didn't let myself read them. I wasn't anticipating greatness and wanted to enjoy their beautiful faces and their innocence over break, it is that simple. Once I sit down and read the reports I feel myself picking my precious boys apart, skill by skill, challenge by challenge. This weekend I finally sat down and studied them. Unbeknownst to me I had a GREAT surprise in front of my eyes! Brady's progress report was by far his best report in a couple years,with progress all over the pages! I saw the word "mastered" more times than I can count! I also saw significant improvement in several areas that he had been stuck in for so long. Sure...he still has plenty of room to grow in social skills, speech & reading comprehension, areas that are very difficult for him. Acknowledging peers and having any type of conversation or playful interaction is still Brady's biggest challenge. Brady is still apraxic and his speech is often difficult for strangers to understand. He also struggles to answer "wh" questions after a story without choices or prompting. So there are still areas he needs to grow, and we will support him in that. But my boy is adding. He is subtracting. He can tell time. He is reading site words off the third grade list only half way through second grade! He can tie his shoes. His strengthening goals in PT have really come along and it shows in his endurance. He is following multiple step directions. He can legibly write letters and words and even sentences. He is using new phrases in his speech. He is protesting verbally and appropriately. He has come SO FAR in SO MANY areas in the last few weeks and months. I could not be any prouder of my big boy second grader, he works SO HARD. He makes my heart smile. Now, having said all of this, no worries for my preschooler Ty. He has been my progress report MVP for the last year, and I will share plenty of posts to celebrate him soon! He is working off a brand new IEP, and admittedly has had a difficult month, so his work on these new goals has only just begun :)

Wednesday, April 10, 2013

Why a home team?

Sometimes people wonder why I have a home team. I am pretty sure my neighbors may think I am a drug dealer with all of the cars that come and go from my house in the evenings and on the weekends. Why do I need "aides" or "helpers"? Why can't I just take care of my boys myself? There are about a million reasons why I have a home team, so I am hoping to share a few of those with the world. When Brady was first diagnosed we ran a full in-home ABA program for his primary education. I hired two young ladies to do ABA 5 days a week with him in our home. One of those ladies...5-1/2 years later...is still on our team. The other young woman is doing great things as well, I have no doubt. My boys and I are INSANELY FORTUNATE to have the most amazing home team possible. I now have a total of 6 gals that work with Brady and Ty. Four of them have been a part of our team and our lives for several years, and just this year I added two new ladies to our team. When I starting sending my boys to Helping Hands full time for their primary education and therapies, I wondered what road our home team would take. We still do an ABA home program through our consultant that comes out from the boys school. But it turns out there is so much more than ABA that my home team can do for my boys. Things don't come naturally to my boys like they do to typically developing children. They have to be taught nearly everything. When it comes to meal time, my boys need to be assisted and taught how to use a spoon or a fork, or how to drink from an open cup. They need to be rewarded for sitting at the table for a meal so that they stay in their seat and actually eat their food. When it is time for a bath, we have to teach the boys step by step how to wash their hair, their bodies, dry themselves off independently, dress themselves and brush their teeth. Nothing comes easy to Brady and Ty...it is all hard work and it takes a hard working team to help them conquer these new skills and over time become independent in doing them. Our home team assists me in taking the boys to public places that they greatly enjoy - the Zoo, COSI, Buckeye Bounce, swimming pools, Zoombezi Bay, Recreations Outlet - and keep them safe and show them how to play appropriately. Even a trip to the mall to get fitted for new shoes requires a second pair of hands to keep my boys safe and make it a productive trip. Most kids can come home from school and play for the evening, but it isn't that easy for my boys. They only have a few "toys" they will independently seek out for appropriate play. We have an entire playroom full of amazing toys, but without the facilitation from myself or an aide, Brady and Ty don't know what to do with them. They can be independent with puzzles, their iPads, coloring and stickers. They also seek out gross motor sensory toys like the trampoline, therapy ball and swing. But to help them to grow in their play choices and play games or partake in any type of pretend play, adult help is absolutely necessary. My boys don't come home from school and ask if they can go outside to play with friends. My boys need help. My boys need help playing, they need help eating, they need help bathing, they need help growing. And my home team is the way I can make that happen. I feel very fortunate that my boys got the funding they have at such an early age to let me do that. I am fortunate to work on another family's home team myself for the last 2 years (that is a blog for another day in itself). I believe I know the keys to running a consistent and successful home team because I have found the most amazing team members and then I am sure to keep hold of them for as long as they will have us!

Monday, April 8, 2013

Why won't he play with me?

"Why won't he play with me?" This is a question I was asked by a little boy tonight at the playground, and it isn't the first time a child has asked me this about Brady (or Ty). Every time it breaks my heart a little more. Brady is 7 years old now. He doesn't have a friend. He doesn't even know what a friend is. He has never wanted to play with another child, and often resists their attempts to play with him if they try. He doesn't reciprocate another child's greetings. He doesn't try to join in their games. He doesn't want to ride bikes with the kids next door. He doesn't know the names of his classmates or try to play with them. He doesn't talk about who he played with today or who he likes or doesn't like. "Why won't he play with me?" Because he doesn't know how. He doesn't know he should or that he could. He doesn't know what fun it is to have a friend. He doesn't know what is expected of playing together or of being a friend. Making friends, playing with other kids, being social...these things don't come naturally like they do to typically developing children. They don't even come as easily to him as they do to some children with autism. Social interactions are definitely the area where autism affects Brady most. And as a Mom, it breaks my heart that he can't seem to progress socially. It isn't for lack of trying on my part or on his therapy team's part. Brady has been in typical preschool, special needs school including peers, he has participated in typical sports and special needs sports, he took place in social groups and many other groups to promote social engagement with peers. It just hasn't happened for him. And when there is zero desire from the child...its an almost impossible skill to teach. It takes incredible prompting just to get Brady to say hello back to a peer, and even more prompting to get him take a turn with them in a game or sport. I can't help sometimes but think about what he is missing out on. I remember my early school days and my first few friends and what those friendships meant to me. I remember playing at recess with them, sitting together at lunch, playing softball, having those first sleepovers...these are all experiences my precious boy is missing out on. This is the area where I find it most difficult to stay positive and keep hope alive. The one silver lining is that I have such great friends myself who have kids who just keep trying with Brady and never give up. Thank you Noah & Grace & Dylan!!! If your child wants to play with a child on the spectrum, and the play isn't reciprocated, talk to the parent about what could be done to best support a relationship between the children. Even if you aren't successful, your attempt and support will mean the world to the family. A friend gave me a great wish of encouragement this evening and she said, "I also struggle with this but I hope that one day you will see the same progress with social play you have seen with other areas, and you'll be able to mark this day as a place on your journey in how far you have come." I pray and hope she is right and that both of my boys see that day :)