Monday, October 31, 2011

Raising a Child with Special Needs

I've been looking over the fence lately at the seemingly greener pastures. I know. I shouldn't do it. But let me give you a picture of what last Saturday night was like for me.
There was a brownie and chili cook off at the church. Paul was getting ready to start working a 2 week stint of the Midnight shift so I let him stay home. The kids and I went by ourselves. This frequently happens as Paul is usually working or gone for work/training etc. I love to cook and even if I do say so myself, I'm a pretty good cook. So I was excited to compete. We arrived there and entered our food and walked around.
It was decorated in a western theme and what did my son spy immediately? A stick horse. He was in heaven. But wait a minute here, go back two sentences before this. "A stick horse." One solitary horse for many children... Yeah, you can imagine. All the other kids were sharing pretty well. They also had 3 cowboy hats and a lot of the kids were content with those. Daniel however couldn't handle that horse being out of his hands or out of sight for very long. He fell apart screaming multiple times. The family that was going to sit with us got up and left. At one point I took him out to the foyer and was holding him as he was kicking and screaming and he peed on me. Yep, you read that right my 5 year old peed on me.
I should have left at that point. I really should have. But those brownies and the chili were dinner and I really wanted to compete. I went in and got the kids some chili and some kool-aid. They refused the chili but were excited about the kool-aid as they don't get that at our house. It of course was red and was spilled everywhere. I finally gave in and let them have brownies. Couldn't get much worse. We were eating alone, no one would come talk to us.
My Sweet Cowboy
Later in the evening someone did come up and talk to me for a couple of minutes and when I tried to tell her about my lovely night I was having, her response was- "Enjoy it. This is the best time of your life, it just gets worse when they are teenagers." Definitely NOT what I needed or wanted to hear at that point in my night.
To top the night off I didn't place anywhere in the top contenders of the chili or the brownies. I was so glad to leave and just go home by the end.
I am seriously thinking of swearing off all public functions forever because Daniel just can't handle them. He loves them but they are too stimulating for him and without me being right by his side the entire time it's chaos. Now someone should have known better than to have only one stick horse. That was a recipe for disaster without having a child with special needs there. And when I saw how he was going to act I should have just left. But sometimes being a parent of a child with special needs you just need some time to feel like an adult and feel social. It's very isolating as people don't understand when your child all of a sudden has a major meltdown, they don't want to get involved nor do they want to be around it if they don't have to.  Hence the family that got up and left for another table. I can't blame them. But it doesn't stop me from feeling friendless, silently crying for help, depressed, and generally unhappy with the people around me. Do I want to stay that way? No. Do I keep picking up and trying again. Yes. Feeling isolated is a VERY common problem for parents and siblings of children with special needs.
I recently read a blog post from one of my favorite blogs, Dandelion Wishes. In it she quotes people from a foster parenting message board she is on and how isolated they feel as foster parents. It was a real eye opener for me to find that here was a whole other set of parents who were experiencing a whole lot of the same feelings and frustrations. Maybe I just need to hang out with some Foster parents instead...  But check out Jane's blog Dandelion Wishes anyway. She is a Homeschooling, Catholic, Adoptive and Foster Mother and I promise some of her posts will make you cry and others will cause you to have hope for humanity like this one about a modern every day hero .
One of my hero's is my sister in law Tiffany. Her boys both have Fragile X Syndrome and Autism. You should check out her blog as well which is located in the column on the right Making Life Work with Disabilities . Her patience with her boys and the way she talks about them is inspiring to me.
Some days life with the doctors visits, therapies, school, and well just life get overwhelming. But I am trying to find moments for me and to enjoy the journey. Gordon B. Hinckley, (former president of our church) said, "Life is to be enjoyed, not just endured." 
This should be my new life motto. I should make a sign to hang in my house to remind me like the one I made last year that says "Grant me patience to deal with my Blessings".
I'm not really writing this to complain. Please know that. I'm writing this more to get it out of my system and document what this experience is like and maybe help someone else out there know that they aren't alone. And so that the next time you see a child falling apart in a tantrum your first thought isn't; it's the parent's bad parenting, and you might offer to help. (Personally when I see another child falling apart, my first thought is, "Thank you Heavenly Father that it isn't mine this time!" I'm bad I know.)

Saturday, October 29, 2011

Learning Farm

One of the requirements with the particular Homeschool Charter school that Daniel is enrolled in is that they spend 9 hours of face time with a certified teacher in a class or tutoring of some sort during the year. This year for our 9 hours we have been going to the Learning Farm here in Anchorage and learning about animals and plants.

It has really made me miss Frying Pan Park back in Virginia. They are free. Luckily the school is paying for Daniel as it's about $20 a trip. Mom and Dad you should do something like this. Look at all the money you'd make!

 Last week Reagan got to come with us. She is usally at preschool during this time but it had been canceled and she was really excited.

 This isn't a great picture but there is a bird on Daniel's head. We got there a couple minutes late so I didn't hear what kind of bird it was but Daniel did really well letting it fly on his head. It also flew on my head several times as I was the tallest person in the room. It's a bit disconcerting to say the least...
This is a root cellar they had just finished digging. They had kids stand on top and one of the Mom's at the bottom to show just how tall it is.

Daniel's favorite part by far was getting to ride the pony. I've been seriously considering Hippotherapy (horseback riding) for him. He would LOVE it. If only there were more hours in the day!

See these worms? They are actually catipillars. They played with them for awhile until they fed them to this guy...

 Daniel certainly has no fear of animals. He didn't mind the Iguana at all.

 Reagan was a bit nervous of the horses at first but eventually she got used to them and would pet them. This Shetland Pony was her favorite, probably because he was a lot smaller.
 They got to milk the goats which they were pretty psyched about. Later that particular day they also made butter and carded wool and spun it with a drop spindle.
We have to watch Daniel with the animals carefully but he loves every minute of it and he's gotten to see and play with a lot of animals you wouldn't normally find at a farm. He can't wait until our next trip.

Friday, October 28, 2011

Hair Bows

Recently I had an oppurtunity to learn how to make hair bows. I don't wear them much but I have a daughter who does and after learning I'll never buy another one again. They are SO easy. All you need is a needle and thread and a hot glue gun, and of course the flower, ribbon beads etc you want to make them out of. This isn't the best picture but it's the ones I made that night. Don't be suprised if one finds it's way into a Christmas package coming to you.  

Thursday, October 27, 2011

New clothes

Recently we got a box of new clothes from Grandma Lois. As you can see they were a big hit.
 Reagan had to immediately put some of them on. My kids think new clothes must mean it's Christmas. They get SO excited.
 And here is a picture that should have been posted long ago... Sorry Mom. Reagan in her Princess dress that Grandma Lyman made for her. It actually sparkles!

Tuesday, October 25, 2011

Primary Program and Articles of Faith

Sunday was the Primary Program at church, and Reagan learned the 3rd Article of Faith to say with her Primary class. She also had a small part by herself which she did in Sacrament Meeting and she did a fabulous job. Here she is saying the 3rd Articles of Faith. Enjoy her pronunciation of the words!Daniel had a small part as well in the program and also did a great job. Of course his demonstration of throwing up while he was sitting up there was priceless as well... He also has been learning his Articles of Faith. Although really that has been for school to work on his memorization skills. Not that he needs much work on them. He hears it once and he has it almost completely, which drives me crazy as I can't remember anything. Here is Article of Faith #1.

Monday, October 24, 2011

School Fun

This was our art project and beginning of our science project a while back. I was hoping to find a kit for Daniel to make with Paul and then paint but we settled on this premade house from Michael's which the kids painted. It took me a couple of weeks to remember the bird seed... But it's finally in and on our balcony. We have so far only seen Stellar Blue Jays visiting it but we're hopeful that as time goes on we'll get to see some more and figure out what kinds of birds they are. This is our Nature Study as the weather gets colder and the days get shorter.

Daniel was very proud of his Liberty Bell. It's a dot to dot which we sometimes do to work on number recognition and sequencing. He remembered that it was the same as a Christmas ornament I had picked up in Philadelphia years ago, so it works for history too. I have recently started making him color things. Fine motor skills are hard for him and it is an extremely rare occasion that he will color on his own. We started just with writing letters, then moved to writing numbers, have now added coloring, and eventually will move to coloring in the lines and not just scribbling through as fast as he can. He loves dot to dots though and picks them out whenever the opportunity arises.

Swimming Lessons... They both love them. The school pays for Daniel's so that is a nice bonus. After tomorrow night we're taking a break for a month or two because I need the break but I still hope to get them to the pool a couple times a week. Daniel has graduated to the Advanced Pike class at the YMCA and Reagan is getting ready to go there as well. Having had a brother who drowned and a child with Autism swimming lessons are very important to me. (The number one killer of Autistic kids and adults is drowning.)

An important day in a young boy's life...

Today is an important day for young Daniel. He lost his first tooth! We had a visit to the dentist about a week or so ago and she informed me that several of his teeth were getting loose and ready to come out. Little did I know just how loose they were!
He's not even 5 1/2 but he already has 2 of his 6 year old molars as well as loosing his teeth so he is well on his way to having an adult mouth. Luckily so far he has not had his mother's teeth. We are praying that his mouth starts to grow soon and a lot as he doesn't have room for adult size teeth in his little mouth. The dentist said that in 6 months when he comes in again we may have to start pulling ones that haven't come out yet just to make room for the adult teeth.
Now that I finally have my phone's camera up and working I should be posting more often and with pictures. I haven't been posting because I had pictures I wanted to add and couldn't get them on here. So here's a picture of Reagan to brighten your day as well.