We've been on our journey of being "parents-of-a-child-with-special-needs" for over two years now. The first year didn't seem that much different than raising any other child, but for months 13-24, we definitely started to feel the stretch. The first year was so easy because raising a baby is raising a baby. For us, Em was never on feeding tubes, or oxygen, so aside from the fact we did physical therapy weekly, there really wasn't anything different.
After that first year though, Em got bigger, her physical disabilities started to become more noticeable for strangers, and the fact that she's so big (tall), started to make it a little draining and taxing when we had or wanted to do things. All that paired with the fact that it felt like she was never sleeping meant that we were practically avoiding the outside world as much as possible. However, after living like a hermit for a solid 10 months, I realized it wasn't fair to her, Jay, or our entire family to avoid doing fun adventures, or going to fun activities just because things would be more difficult. So today I'm going to share with you a few things that have made all of this just a little bit easier for us over the last few months.
A Portable Sleeping Tent: Because Em is so tall, she fully outgrew being able to sleep in a pack n play at about 20 months. This meant that if we traveled anywhere, we didn't really have a place for her to sleep because beds aren't safe for her, and she would just roll all over the floor all night and never sleep if we tried that, so we needed something that could confine her a little more. We've been loving our PeaPod Plus tent that we got from Sear's in May. I love that it's super compact, so when we're not using it, it folds up into a small disc, but that the actual tent is 52'' in length meaning that it should be long enough for Em for a few more years. It's significantly less bulky than a pack n play, and there is a padded mat on it that makes it just as comfortable.
Bigger Hotel Rooms: This last year we've kissed goodbye the idea that we can all sleep in one room together and have it work out. We have officially moved into the realm of two bedroom suites which seems so unnecessary, but because Em has such a hard time falling asleep, and she's often pretty noisy until she falls asleep, it's nice that we can stick her in her own room, and then Jay can sleep on the pull out couch, and Derek and I can have a room to ourselves, where we hopefully can't hear anything that our kids are doing. To me, it's worth the extra money while traveling to be able to get a good nights sleep and not hate everyone during the day when we're trying to go places and do things. Plus, we just reserved a room for $149/night at a Marriot for when we're in NC in a couple weeks, which is almost what you'd pay for a normal room in some places... so... worth it.
A Good Stroller: When Em was born we bought the Baby Trend Sit and Stand Stroller on Amazon and it was horrible for us. I know a lot of people love their sit and stands, but I'm pretty small, and not incredibly strong, and it was so large and bulky to push that it was really straining my wrists every time I used it. I wound up giving that one away, and used a $20 umbrella stroller from Target for about a year. Then finally when we went to Florida this year, I wanted to get a stroller that could convert from a single, to a double, in case Jay wanted to ride, and then when Jay no longer wanted to be in a stroller, I could have it as just a single for Em. I found a 10 month old Phil and Teds double stroller on craigslist for $300, which is more than half off the original price, and jumped on the deal. It's been one of the best parenting purchases I've ever made, and and I love that it will work for us for years and years to come. Em is in our stroller 90% of the time when we go places, so it was really important to get one that would last, and that would function for our needs.
Babysitters: You have to tell yourself that you're not the only person who is capable of taking care of your child. When we lived in NC and Em was a newborn, we left her with young women from church all the time because they were all obsessed with her, and enjoyed watching her. When we moved to Georgia and didn't know anyone, it was hard to feel comfortable leaving her with other people because she was so limited in her mobility, and I thought that the sitters would accidentally hurt her, or try and have her sit and she would fall over... but then this summer I just got over myself and started ditching her with every babysitter I possibly could, and you know what? She was fine every time. She would cry for five minutes, get over it, and then happily play until whoever was watching her put her down for a nap, or put her in bed. After going from zero dates in an entire year, to more than 10 in the last three months, I can say Derek and I like each other ten times more than we did during our non-dating period. I realized in some cases, some kids may have more needs, like oxygen, or a feeding tube, but I really can't stress how important it is to train/teach at least 2-3 other people how to care for your child so that you can have a break.
Get a Gym Membership: This kind of goes in the same vain as the babysitter, but we recently got a gym membership at the YMCA, which means I can drop my kids off at the daycare for up to two hours (though I never go more than one hour) each day, and get a well needed break from my kids. Not that I don't love them, but being the primary care taker, and having no other family around... it can feel daunting at times. I love that my kids will happily go do something fun for themselves while I work out and have a peaceful shower when I'm done. Also, if you can't afford a Y membership, look into their financial assistance program like we did. We wound up getting our membership fees waved due to Derek's income and the high amount of medical bills that we pay for Em.
Have a Friend Who Really Gets It: All your friends with typical children are great, and they're supportive, and loving, and we need those friends too, but having a friend who is going through the same things as you on a daily basis is invaluable. We met a family when we moved to our new house who has a son with autism, and they've literally been through pretty much every single thing that we've been through with Em. I've loved being able to bounce thoughts and ideas off of her, especially since her son is older than Em, so she likely has all the good answers for things before I get to that next phase in our lives.
A Sensory Blanket: I've talked about how much I love our sensory blanket in this post here. But it really has been life changing for us, and if you're on the fence about making one, all I really have to say is just do it! You're 4 hours of moderate labor away from the most joyful nights sleep you've ever had in your child's life.