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A blog about our busy family with two amazing kids, one of whom happens to have Down syndrome!

Saturday, January 21, 2017

A little bit overwhelmed

I have not been blogging much at all lately. Life is too busy and to be completely honest, I'm finding myself extremely overwhelmed a lot of the time. Greg's working 60 hours a week. I'm working 40 hours a week. The kids are both in (different) schools. There is grocery shopping to be done. Meals to be prepared. Homework to be done. Baths. Bedtime. Everything that comes along with a busy family and two working parents. Lather, rinse, repeat. I. Am. Overwhelmed.

Having a child with a disability is hard sometimes. It makes me feel guilty to admit that. I'm working on this in therapy, my feelings of guilt. I love her so much and I wouldn't change a thing about her, but love doesn't make it easy. She needs so much attention that I often feel like Ryan is neglected. I feel guilty about that. But in fact, I know he is neglected when we're out in public. The constant fear that Lauren is going to dart away and get lost, get hurt, get kidnapped...it demands 100% of my attention sometimes. Ryan is such an awesome kid and almost never complains about it. And when he does complain about it... I try to just hug him and say, "I know".

The kids and I went to a birthday party a couple weeks ago and it was so much fun. It was for one of Ryan's friends. We'd planned on dropping him off, but Lauren and I were invited to stay so we stayed. She did better than I expected, but at one point I was trying to feed our tickets into the ticket counter, Lauren was overstimulated, and she tried to run. I hear Ryan shouting for me. He had grabbed Lauren around the waist and sat down. He was yelling for me to come get her. She was crying because she was mad, he was getting upset because she was crying. But he was trying to keep her safe and he did. He kept his sister safe. I love that he is such a good boy but I sometimes feel bad because he's only 7 and I don't want him to feel so responsible.

Today, however, was a great day. The kids let me sleep until 9am. We played the game Sorry. We went to McDonalds (only the healthiest food for our family). I successfully used Netflix as a babysitter so I could take a shower. I took the kids to a play at a local high school. They did great at the play! Lauren didn't even just do good "for Lauren", she did awesome. She was totally enthralled and even shushed me for coughing. Ryan did great as well, of course. They both really loved the play. It was You're a Good Man, Charlie Brown.

It's not at all like things are all bad. They're not even usually bad. Ryan is doing awesome in school. He's been so sweet and polite lately. He lost another tooth today (and the Tooth Fairy had to steal a dollar from his piggy bank because she has no cash, haha). Lauren is doing so well and is speaking in full sentences. I made the mistake of trying to hurry her along when getting her in the car. She said, "Don't be mad mom, I'm trying!" Ryan said {insert 1st grade bathroom humor} in the car and she told him, "Don't say potty words Ryan, Daddy will spank your butt!"

The kids started swimming lessons this week and it was seriously so great. They both loved it and Ryan's confidence in the water has really soared. I'm so incredibly proud of him, water was a huge fear until recently. He told me he wants to try to put his head under the water soon! And he asked to go to an actual kids salon for a real haircut soon! He has sensory processing disorder, so this is MAJOR. He might not be able to do it, it might not work out. But he's asking to try. My heart is overflowing with love and pride for this boy.

So yep. This is me in a nutshell lately. I miss my blog. Writing is my outlet and I've been struggling to find time for myself that doesn't include sleeping.

Service Dog

Those of you who know us in real life or on Facebook know about Lauren's struggle with elopement. It's been absolutely terrifying. Words cannot even express the fear that comes when your child disappears. It's not poor parenting, it's not inattentive parents. It's a very real part of disability and something a lot of autism and Down syndrome families struggle with every day.

Lauren is getting a service dog this spring! He will be trained to prevent her from elopement. He is also being trained in search and rescue so he can locate her if she does elope.

It's all private pay. We were fortunate to find an awesome organization that while still expensive, is much less so than other larger organizations. Some service dogs cost around $30,000! Lauren's dog, Monte, will end up costing us right around $7,000. More including travel, as the program is out of state.

We've been there once to meet him, the program director, and his trainer. We'll travel again in late April to train and then bring him home. So you'll all be seeing us with a very important addition in the near future!