Category Archives: Holiday
As I sat last month and watched JD perform with his kindergarten class I couldn’t help but think once again about how much he has progressed. I filmed his little show, zoomed in on his fidgeting and spinning, thinking it would be so fun to show all of you how well he is doing. When I came home to put it online I somehow accidentally deleted all the video and was so darn upset about it I didn’t post anything at all.
With my nursing program starting at the university it hasn’t left much time for blogging. I really do like to spend all my extra time with the kids. Lets face it, if I don’t even do the laundry or clean house when I’m in school then things like blogging are really not going to get done. I decided however that since we are halfway through the school year and our little guy turns 6 next week it is time to dust off the old blog page and post a quick update. I can’t believe it’s almost been 3 years since that horrible burn but oh baby how we’ve grown since then.
Here’s the skinny on Deeds and Magpie:
Deeds is now as tall as some of his cousins were when they were almost 8 years old. The sweet boy is really a gentle giant just like his daddy and I’m sure will one day tower over his mommy (and it’s not like I’m a small fry). He has been
liking LOVING kindergarten and academically he’s doing amazing. A far cry from being told he probably wouldn’t be able to speak, now we can’t get him to stop and we love it. He is an amazing big brother and while he still has some very autistic moments that little sister doesn’t understand they get along quite well and love to play games together.
Our latest bit of fun combines my love of Disney and his love of video games. They got the Disney Infinity play set recently and Deeds loves to ask me to play with him. It’s so fun to connect with him on a new and unexpected level. It is really something I look forward too. Even on days like today when I could only play for 10 minutes with him.
Magpie is still feisty as ever and such a good girl. Since Deeds has been seizure free for a couple of months I think she was getting bored. That is until I did respite for a family who had a special needs son and we had him at our house for a few days over the holiday break. Magpie LOVED IT! She followed his wheelchair around, responded to his seizures and was on her best service dog behavior the entire time. It was fun to see her snap back into things. She is quite the fixture at church and everyone is so used to her now she gets told hello as much as the rest of us do. Lately we have seen quite a few dogs in public places that aren’t service dogs and it has caught her off guard when another dog barks in a store or something but she’s such a pro at this point it’s usually no biggie. Sure she still has her teenager days, but most of the time she is her spunky self.
I hope it isn’t as long between updates next time, but with the fun of Nursing school I’ve learned that my life isn’t always my own right now. Hope you enjoy the pic’s and know we still love and think of all of you often! You helped our guy and changed his life, it’s something that won’t ever be forgotten by us.
I’m posting this on Deeds blog because he is the one that originally told his little sister to be Captain American for Halloween. I didn’t think she would take it to heart but low an behold she decided that she was no longer going to be cinderella, and she was going to be Cap instead.
I showed her pictures of the female Captain but she wanted nothing to do with it and was determined to wear the muscled up kid costume she has seen all her boy cousins wear. I asked if she wanted me to make her a skirt and she replied, “No mom. The Cap doesn’t wear a skirt!”
Then she wanted sparkly shoes, ruby slipper style and next thing I knew she decided a tutu would be just the thing to complete the costume.
I ran to Hobby Lobby today and got the tulle for the tutu (yeah for no sew tutu’s) and then decided to get some sparkly felt like material to make little embellishments to hook onto her sunday shoes. I have a handy dandy circle cutter so I figured it would be an easy task when I bought the stuff but then I couldn’t find the cutter. I just printed out a logo online and then traced the shape and cut out each layer then hot glued it all together. Since the middle is actually 5 pieces thick it turned out to be really sturdy and I may make a smaller set at hair bows and then put her hair in low pony tails in the back for trick-or-treating.
Thanks to the tulle being 50% off the entire costume only cost me $15! WAHOOO! The eye holes on the mask really drive her nuts so I think I’ll just sew them up and out of the way so she wears it all like a hat instead.
I just have to say. Deeds is one awesome big brother and his little sister adores him, and all of his little quirks. Deeds is going to be the Red Power Ranger and now they are plotting what Magpie is going to be…it’s going to be a fun Halloween this year.
It’s that time of year again. The magical time when we deck the halls. Run to and fro to parties and Christmas activities and watch school programs. We have really learned through the years how Deeds handles the chaos of the holidays best. Lets be honest, if he is having a rough time, we are all having a rough time.
Sister helped surprise Deeds yesterday by putting up the Christmas tree for the first time in a couple years. Since I’m usually stressed about finals and then trying to handle how Deeds is going to deal with the holidays we haven’t put in the effort to put it up recently. This year we think we are better able to handle how things go. We have a plan. Our holiday game plan involves the unconventional skipping of opening all the presents Christmas morning. Leading up to the “big day” when we get a visit from Santa we open a present each night. Doing things this way keeps Deeds interested and not too overstimulated. Last night our first gift opening began with the kids giving each other the gifts they picked out. It’s the first year we’ve done a sibling exchange and it was a huge hit. Deeds was bouncing and flapping to his heart’s content as his sister opened the gift he picked out for her. The only hick-up we had, was when he felt the need to pick up each shred of paper and run it into the garbage, screaming for Gwen to “WAIT TILL I’M BACK!” before she could continue opening it. Since she is three years-old you can guess how well that went. Once we explained that we could just pick up all the paper at the end he stayed next to her squeaking and jumping for joy as she opened her prize. It was adorable.
Today Grandma, a cousin, Gwen, Magpie and I went and watched Deeds school concert. He was adorable. Even when he just laid down at the end before it was all over. He said later it was just too long. After we got a visit in his classroom from Santa. This year there were no tears and both him and sister loved getting a sucker and being able to tell Santa what they want for Christmas. Even Magpie got a chance to visit the big guy.
Last night Daddy sat with the kids and they did Christmas letters to Santa too. Thanks to the magic Gwendolyn sees this year in the holidays it’s become contagious for Deeds and made everything so fun! So different than any other Christmas we’ve had before.
Magpie did much better with trick-or-treating this year than she did last year. I’m sure it’s because she has been with us for longer than just a couple of days unlike last year when we were in the middle of training in Ohio with er. This summer Deeds decided that he wanted to be Hercules and then proceeded to say what everyone else would also be from the movie. Little sister was Meg, Magpie was Pegasus, mommy was a Muse and poor daddy got stuck as Hades. By the end of the summer, thanks to ebay we had all the costumes set and it was really fun. Granted no one really knew who we were but the kids didn’t mind explaining to them.
In Halloween’s past we have learned that Deeds loves the holiday but it can be incredibly overstimulating for him. His favorite thing to do was to make sure people shut the door so he could then ring the door bell and even if it was obvious no one was home we couldn’t keep him from continuing to go up and ring the door bell of each and every house. This year was a bit different. We went with some of his cousins and soon our group got separated. Deeds, Magpie and I headed off with the older cousins while daddy and Gwen hung back with the younger.
At first it was great, lots of fun and laughter as the boys ran from house to house but soon Deeds would lag behind and then start to melt-down when he realized the boys were already at the next house. Even when they stopped to wait for him he was getting pretty upset. Finally I figured out that it was because once at the door people were often letting the kids just pick out their own candy. This became quite time consuming for Deeds because he would put a lot of thought into which piece he was going to pick and heaven forbid they then told him to take another.
At one point apparently Deeds wasn’t a fan of any of the candy in the bowl and I overheard him saying “Do you have any candies? I just really don’t like any of these kinds in here.” I quickly stepped in and tried to explain to him that it’s not polite to say and you should just take a piece anyway and say thank you. We intentionally go trick-or-treating in grandma’s neighborhood where they all know Deeds and Magpie just in case situations like this arise. Thankfully they were quite nice to my little dude and he was soon racing off to the next door.
As Deeds gets older we see some amazing progress in how he is doing but then there are times where the more autistic tenancies come to the surface. Holidays have become a bit of a dance for us and while we never know exactly how something is going to go from year to year we are thankful for an amazing supportive family (including his fantastic cousins) that always rolls with the punches and helps us out.
Deeds wants to wish everyone a very Hoppy Easter! He came home from school looking like the cutest bunny in the world yesterday and wouldn’t let us wash his face until bedtime. We had to go somewhere last night and he screamed in the car for almost 20 minutes because I wouldn’t turn around and go back to the house to get his ears. It was a long drive, it’s amazing how he attaches to things sometimes. Even when he headed off to the bus this morning he had to wear his ears.
We decided it was the perfect time to color eggs as well since Daddy now has Thursdays off and was home. I didn’t have food coloring like I thought so I ended up using a little icing gel paste coloring and it worked out really well. I almost wish I’d boiled more eggs so we could have tried out more colors. They were really vibrant and we had only let them sit for a second or two in the colors. I would squirt a bit of the coloring in a cup then use 1-2 tablespoons boiling water and stirred until the color was dissolved. Then we added 2 tablespoons white vinegar to each color and filled the cup the rest of the way up with hot water. I probably could have used 1 tablespoon vinegar but I’d read that someone else online said that they had the colors stain everything so I was hoping it might help to add more. It didn’t stain anything but we were also pretty careful. Deeds would freak out if he got any on his hands so daddy and mommy did most of the coloring and he would supervise. I also used our cheap little children’s Ikea cups for the colors which worked perfectly since they were just the right size to cover the entire egg AND I put the corresponding color in the matching cup so the kids could really tell them apart. We’ll be doing that again next year and as a matter of fact when the kids outgrow the cups I think I’ll just put them in the Easter box to use from now on.
Daddy now works during the weekends so grandma and grandpa are going to go to the egg hunt tomorrow with us. Grandpa is going to bring his nice camera so hopefully we can get some fun pictures. We woke up to snow today but it’s suppose to get nice again tomorrow so we will cross our fingers and toes.
Deeds, Magpie and mommy also get to go to a Neon Trees benefit concert for his school tomorrow night. If you are in the area come have fun with awesome music and support our little dudes school! Click the link on their name for tickets.
Once again from our home to yours we wish you a Happy Easter. Gwen and I found this video and I hope it touches you the way it touches us.
We are still here! Between Christmas excitement and then sickness hitting our home after sadly you have all been left hanging. To make up for it we have a lot of fun pictures to share with everyone.
Christmas was amazing. The highlight for Deeds was the giant Sock Monkey holding the stocking from Santa and the handmade Sock Monkey blanket my cousin made for us complete with hood and built in mittens. We went to church with Grandma and Grandpa and then enjoyed Christmas dinner over at their house. The kids did fantastic and Jeremy and I were really happy about how well the entire day went. When we got home that afternoon I sat with Deeds and did the new puzzles he got. He was a BIG fan and we already picked up another new one for his birthday in 2 weeks. (SHH DON’T TELL)
The next day is when the over-stimulation and meltdowns hit hard. He’d calmed down a bit by that afternoon but we had another family dinner and it took almost the entire time for Deeds to relax and interact with people. It was even family he knew well and usually adores to be around. The low point was when his uncle said hi to him and he screamed and curled up under a chair. Thank goodness for Magpie, the iPad and wonderful family.
Now we are getting things cleaned up and all the Christmas decorations are being put away. I think our little guy will be happy to have things organized again.
Today was a pretty relaxing day. We let Deeds open a present from his cousin this afternoon and then this evening he got some jammies and books from Grandma and Grandpa. All my siblings were with their in laws this year and since Jeremy’s family lives in Houston (WE MISS YOU) we spent a very quiet evening with grandma’s and grandpa’s. Deeds Great Grandma even helped him decorate his cookies for Santa.
When we got home a special package had arrived in the mail for Deeds and Gwen. Mommy quickly wrapped what was inside and let the kids unwrap this special gift before bed.
I love how at the end of the video he says “Magpie that’s you and that’s me.”
Thank you to the amazing Animated Woman for not only doing the original for deeds but for updating the picture to include our miracle Magpie. It was wonderful of you to take the time to do that and he is SO proud of his new shirt. (PS if you guys haven’t seen her blog before it is a lot of fun, you really should go check it out.)
Tonight before bed we drove around and looked at Christmas lights. Deeds even told me that there were so many because “Santa turned them all on.”
Could it be, did my little guy with autism actually grasp the whole Santa thing? I mean we watched a nativity story tonight and he understands who baby Jesus is and he knows Santa is someone who you sit on their lap and gives you candy but that’s about it. I explained that we open presents from Santa to celebrate Jesus’ birthday and a he understood that. Birthdays are something he has always adored. I’m just worried tomorrow he is going to ask where the cake is.
When we got home he would not go to bed so Jeremy found a link to make a personalized video from Santa. We did it and played it for Deeds and it actually worked. It was so cheesy we tried not to laugh too hard while he watched it. I think at first he thought he was in trouble when Santa called him Jacob. Honestly I couldn’t get it to say JD or Deeds and since his first name is actually Jacob we went with that. He changed the milk we left out to chocolate milk and then went RIGHT TO BED because he wanted a surprise.
Sometimes things surprise me. Tonight was one of those times, I never would have thought he would react like that. It was pretty awesome.
I mentioned before that with Christmas we have learned that Deeds opening presents with everyone Christmas morning leads to an entire day of meltdowns, stimming, and over-stimulation. This year we are doing presents slowly and one at a time.
Today a box came for Deeds from a dear friend in Ohio. He was very excited when I told him he could open the wrapped gift inside and proclaimed “It’s my birthday, I’m 4!” I had to chuckle since I can tell he is more excited for his birthday in a few weeks than Christmas. I explained that he is still 3 and it’s a Christmas present but at that point he just wanted to open it. I took a video of it so that our friends could see how excited he was. I was trying to help Gwen and film at the same time so it’s a bit shaky but thanks to YouTube’s editing features I tried to stabilize it a bit.
He sat an played it a dozen times before nap time and it was perfect for him. I love our new plan for Christmas of doing it slowly. Sometimes you just have to find the right balance to make things work out.
I’ve already mentioned how hard the holidays can be for us, and many families that have children with special needs in them. Changes of routine, over stimulation everywhere, lots of visitors, outings, parties, presents… you get the idea. With school being out we’ve been trying to keep Deeds occupied at home, some days are better than others. Thankfully he actually enjoyed himself at a Christmas party the other day. A friend of mine invited us up to have waffles and share Christmas stories.
Jeremy had to work so I got the kids and Magpie ready to go and we headed up to the party. It was about an hour from home and Deeds decided to spend that hour screaming. Once I got to the party we sat in the car for a good 5 minutes while I decided if I really wanted to go in with both kids and Magpie by myself or just go back home. I decided to at least go in and say hello and was pleasantly surprised when Deeds calmed down. At one point I heard him talking quite a bit to some people there. I walked over and asked if he was talking about Little Big Planet and they told me he was. It wasn’t hard to guess since he was actually conversing with them what the topic would be. Little Big Planet, Angry Birds or the alphabet are all his favorite topics to talk about right now. Catch him at a good time and ask him about one of those things and he may start talking your ear off. Catch him at a bad time and well, he’ll yell. We are working on it.
My friend let me know that Santa was going to be stopping by. I let Deeds know and he wasn’t so keen on seeing Santa again. This Santa however was different. It was the first time he’d seen a black Santa and he was so much more comfortable with him than any other Santa we had seen (including Grandpa Claus). Even little sister sat on Santa’s lap. The day before she literally made Santa toss her the candy he had for her since she wouldn’t get too close to him. What a change.
We stayed much longer than I expected too, Deeds even laid down with his blankie and Magpie at one point to listen to some stories. Feeling the normalcy of the evening after hearing him scream all the way up there was wonderful. I’m so glad I didn’t turn around and go back home. I’m thankful for loving friends who open their homes to us and take us as we are. When an entire roll of toilet paper was found unwound (we still aren’t sure who’s child was the culprit) she didn’t even bat an eye as she wrapped it around the tree to make it look like ribbon. Even Magpie got a warm reception. Thank you. It was a fantastic evening.
Yesterday we started working with Magpie full time again and she is doing fantastic. She was very tired at the end of the evening but we couldn’t be happier with her recovery and willingness to get back to work with Deeds. It’s warmed my heart every day when Deeds gets home that he gives her a hug when he sees her waiting at the door for him.
As this coming week approaches we wish we could share the love in our hearts and home with all of you. It is a Christmas we will never forget and has shown us the amazing spirits in this world that we are honored to know, and that we have just met. Thank you. From our home to yours, may your days be merry and bright. If you are alone this holiday season please know we are thinking of you and you are forever in our prayers.