Welcome to my blog!

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!

Monday, November 14, 2016

Handicapped Parking

We got a handicapped parking tag this summer in anticipation for winter time. Lauren's a runner and I didn't want to chance her running off in icy conditions and cars not being able to stop, if they even saw her. Plus she tends to do the typical Down syndrome drop and flop at the most inopportune times. And carrying a squirmy, low-tone kiddo who's wearing a slippery winter coat while I am also wearing a slippery winter coat is a recipe for disaster.

I've been using it for restaurants and the grocery store lately. Lauren weighs 38lbs and has moderately low tone and places where I can't bring her stroller, like the ones I mentioned above, I end up carrying her because either she doesn't want to walk at all, runs off, or drops/flops and refuses to move.

Holy cow! It has made my life SO. MUCH. EASIER. It's generally a much shorter distance, so she's usually willing to walk it. And if she doesn't want to or refuses, I can actually carry her because I'm not schlepping from the back of the lot.

It's honestly been lifechanging because I really don't go anywhere without her except for work. She comes with me to the grocery store, to Target, to church, to restaurants, to the mall, etc. She loves to go places and I love taking her, and I found our parking lot struggles were making me feel too overwhelmed to leave the house with her.

I was so against it because I didn't want to be seen as someone abusing it, and if I'm honest I didn't want her to be handicapped. But I am so super glad we decided to do it. I am so thankful that it's available to us and it keeps Lauren safe and keeps me sane.

Monday, October 31, 2016

Struggle Bus

Time for a post to round out Down syndrome awareness month. Not that I've done any other posts this month. This is not unicorns and rainbows.

Lauren is riding the struggle bus lately with behavior. Part of it is because I baby her and she acts a totally different way with me than she does for other people. And I've spoiled her rotten and she wants to be held 24/7. My back hurts a lot due to the lifting. She's learned to jump as I'm picking her up so that's really helpful! It's also super cute so that's an added benefit.

She had a meltdown at Toys R Us this weekend of epic proportions because I dared to make her stop sitting on a ride on toy. I ended up practically dragging her to the car to get her adaptive stroller to contain her. My Ryan was so super helpful during this time, asking if he could unlock the car for me, carried the keys, etc. Yesterday at a birthday party she got upset and hit me because I was trying to move her from one place to another. This is tough for me because Ryan never did this. He was always a fairly easy kid to reason with. I've tried, it does not work with Lauren. When she is fighting me and trying to run away from me, I can't physically manage her anymore when she's literally kicking and screaming. As soon as I put her down, she's fine. But she's also running away from me. Thank God my dad was with us at the birthday party! And my sister helped me keep an eye on both kids, on top of watching her own two kids.

At one point he did sigh and quietly say, "Mom, it's really hard sometimes having a sister with Down syndrome.". It made me so sad! I just gave him a hug and said, "I know buddy. You are the best brother for her!" I was so glad he was able to verbalize his feelings. I'm sure it IS hard for him sometimes. And he almost never complains.

I'm not sure if it's just that she's a fournado or a developmental phase. But lately, This. Is. Hard. I feel like I'm failing her more often than not. I feel like motherhood is not something I'm good at anymore because I don't know how to parent her in public when she's misbehaving. At home I can put her in a time out, take things away, speak more firmly. In public she doesn't have a bedroom for time outs. I feel like I can't yell at her or people will think I'm abusing my disabled child.

I feel like I'm failing Ryan because he almost never comes first and that's not fair. I did sign him up for soccer on Saturday mornings and he loved it. Just he and I went and we got a Slurpee afterward.

My mom and I talked about this recently after another behavior struggle at a family party. I said it makes me upset when she misbehaves like that in public because I don't want anyone to think my life is hard. She said, "But sometimes it is. It's okay for people to see real life.". The hard part is that I don't want anyone feeling sorry for me or for us. I would choose her again and again and again.

Sigh. I'm thankful for my stash of Halloween candy and good wine.

Monday, August 29, 2016

Elopement-Awareness and Grace

It happened again.

Lauren eloped at a mall over the weekend. She was gone for an hour. The police found her. She didn't even know she was lost and was very excited to tell me that she got to see a police man. The rest of us were VERY shaken up, this will take us a long while to recover from.

We ordered her an Angel Sense GPS tracking system that should hopefully arrive very soon. I will be sure to post a review once we've had it and used it awhile. (Not sponsored of course, nobody cares that much about my opinion!)

This is something that has a lot of public awareness for kids with autism. Not so much for kids with other disabilities!

We need to all live in grace with this issue. A child can slip away in an instant. Especially a child with about zero impulse control and no sense of danger. When that little boy fell into the Gorilla pit at the zoo my mind immediately went to my Lauren.

We already have an Alert Me band with our phone numbers on it. It also says, "I have special needs" and "Please call if I am lost". Hopefully this GPS tracking device never needs to be used to locate her, but chances are it will.

This part of special needs parenting is hard. I am so thankful for our village.

Friday, July 8, 2016

She's learning so much

Lauren has been learning like crazy lately!

I got home from work today and I asked Lauren what she did. I do this every day and sometimes I get an answer. Most often she tells me "uh-uh" or "go away" or my personal favorite, "pee-pee", which are her go-to responses when she's not sure what to say.

Today, however, I got a real response! She told me "Renee house", "Renee dog" and "I pee my pants". I asked her where she peed her pants and she told me "Renee house". She did indeed go to Renee's house and saw Renee's dog! I don't actually think she peed her pants, Ryan said she didn't! She is apparently picking up potty humor and thinks it's completely hilarious to answer questions with inappropriate answers. This week at Kroger a lady asked her what color her shoes were and Lauren responded, "Pee!" Luckily the kind woman thought Lauren was trying to say pink!

On Wednesday for the very first time she asked another child their name without any prompting! She went up and said, "Hi baby! What name?" While signing "name". I was so super excited! Unfortunately the child she chose to talk to was really young and not able to answer, but still! That is a big development!

We have been going on bike rides lately because we bought Lauren a bike seat for my bike. She LOVES it and asks to go all the time. Her favorite thing to do is look for dogs. Today she wanted to look for dogs, cats, and babies. We saw a baby and 2 dogs so I'd call it a win.

I just feel like she's a little sponge lately, she is soaking up everything around her and talking so well. And so much. She says all of our names so clearly. She calls me mom, mama and mommy. She pronounces mommy like mah-nee, with an n. It is SO adorable. She can say daddy now, where she used to say da-ee. She says potty now instead of pa-ee. She will at least try to repeat almost anything. We have this one particular book of animals and she can say so many of them now! Kangaroo, turtle, dolphin, monkey, butterfly, camel, tiger, lion, hippo....and she says them spontaneously when she sees their pictures. She knows the animal sounds for a ton of animals and has a specific roar for the tiger, lion, and bear. She will tell me "bird fly in sky!" while flapping her arms and pointing the sky. On our bike ride today we saw an airplane and she said, "Mama! Airplane in sky! By airplane!"

We got a new playscape for our backyard! We got it used and it is amazing! The kids really love it. We had a party on July 4th and while we had everyone over, we made them work for their dinner! We'd had it in our side yard for a week but it was huge and heavy and we needed as many hands as possible to get it over our fence.

And this guy. He has been so sweet to his sister lately! He's been inviting her to play with him and sharing his toys so well.

Saturday, July 2, 2016

4 years of Lauren

I have fallen off the blogging truck. Its been months since I've written anything which us due to a combination of writers block and smooth sailing.

Lauren is 4 years and 4 months old. I could never picture her being this age! She is so much fun. And so incredibly SASSY. She is 4 going on 14! Let me just enlighten you on some of the funny things she is doing.

-If she doesn't want to do something she's asked to do she says "No ma'am!"
-She has a bike seat attached to my bike and she loves bike rides. She will just go get her helmet and put it on of she wants to go for a bike ride, then come find me and say "Mom! Want bike ride!"
-She loves to brush her teeth
-She loves to throw everything in the toilet. Recently this resulted in major plumming issues that resulted in 2/3 of our toilets having to be completely disconnected and removed.
-We are on our 4th pair of glasses since August. I'm sure you can guess why.
-She loves to sing. And pray. And talk nonstop every single waking moment of ever single day. Its so awesome and we know how blessed we are that she's so verbal!
-She is potty trained!!! This was a rough go at first. She was afraid of pooping in the toilet which resulted in even worse constipation than usual (sorry for the TMI but I know my Ds families feel out pain). Now that she's not scared and taking fiber gummies daily, she is having daily bow movements in the potty! PTL!

Really, life has been mostly good here. Lauren has been running/eloping which is absoluty terrifying. She can slip away in a second and while she seems momentarily afraid when we catch/find her, she truly does not seem to understand danger. She now has a bracelet she wears 24/7 that says "I have special needs" and "Please call if I am lost" along with our phone numbers. We're looking into GPS tracker bracelet systems. We've talked about a service dog but the cost is prohibitive. We double and triple lock our doors. Our outside gate gets locked. Ryan is always on the lookout. I feel bad because I know this causes Ryan a lot if anxiety too and he's only 6 years old. We were watching her at gymnastics this week and he briefly couldn't see her. He lanicmed and said "Oh no, I bet she ran. We need to find her." I explained that the gym was owed in and that she could not get out. This worry has become a way of life for us that is very stressful! She's gotten lost at a museum (briefly, with 2 adults watching her), escaped from our house (I found her 2 blocks over), runs from us at church, almost jumped in a swimming pool, etc. Its so scary. And Ryan kind of gets neglected while we're out because I know he won't go anywhere. We've started bringing her adaptive stroller pretty much everywhere to contain her. She would way rather walk, so this is not a fun option but it is a safe option. We bought a little backpack leash that we haven't used yet.

Mostly, 4 years into this journey I am still surprised at how fun it is. She has such a joyful spirit (which makes discipline so so hard for us!). I'd swear she is made if pure sunshine.

Last night I got home at 9:15 and she was still awake. She was so hyper and had the giggles. She is usually very lively but this was comparable only to a leprechaun on cocaine. My arms were weak with laughter while trying to escort her upstairs for bed for the millionth time. Then we were rocking in her rocking chair and she kept kissing me and then cracking up again! I was trying (and failing) to keep a straight face. All I could think of is that I know I never deserved any of this. And I am so so blessed.