The Up's & Down's of 1p36 Parenting

Alayna trying so hard to sit. She is now 19 months old.
Alayna continues to love toys that play music or light up. This bus was one of the boys baby toys and it has been a life-saver. She loves it.

Alayna smiling in the stroller at Adventureland.
This is another toy that Alayna loves. We have 2 of them - one for the diaper bag and one for home. I used one of Alexis's hair ties to strap it to the stroller so she could hit it herself and we wouldn't drop it.
Alayna is becoming better with the self-feeder. She still drops it, but holds on to it longer than before. Here she is having some green grapes.
It was funny to see her face when she bit down on the grapes and they "popped." She likes to hold things and as you can see is still making the connection that it is actually her holding it. It's like she enjoys checking herself out and is starting to realize those are her hands and they have a greater purpose other than being sucked on!

Finally a smile....because we haven't had too many of them around here lately. I'll explain later!
I had to sneak a picture of Douglas in here. This is one of the many frogs he has found over the past week. He tried to bring it in the house, but fortunately I went to the garage at the right time and stopped him. I told him I'd go get the camera instead and take his picture with Mr. Frog. As you can see, he is so proud! We have so many tree frogs around here and my boys are ALL BOY and will pick up just about anything. Douglas did sneak a little tree frog in the other night while I was on the phone and it wet itself all over him. it wasn't too funny at the time, but now I laugh!

My dear friends, it's time for another heart to heart. Remember, you are my scapegoats and I'm sure I'll feel better after I'm done typing what I need to say. Like I said in my early days of blogging, this is my therapy and you read at your own risk.

I'm going to start first with the "down's" my family has been dealing with lately. It's always better to end with the "up's." Raising Alayna has been by far the biggest challenge I've ever faced. I do consider myself a mentally strong person, however, having Alayna has put me to the test and I often doubt how mentally stable I really am. Lately, Alayna has been going through periods of constant crying and/or hand and arm biting. These instances just pop up without any warning. A little one's crying for such long periods of time each and every day can wear on anyone. I don't care how strong you are, it is tough to listen too. And to some of you, that might sound minor or silly, but I'm not kidding when I say it is driving my entire family crazy. It's not fair to my other three kids that I have to devote so much attention to Alayna. It's not fair that they have to put up with the crabbiest, short fused mom in Illinois City. Alayna's behavior is so unpredictable. It makes it tough to go anywhere because we never know how she will behave. So, our house is pretty darn loud and chaotic until they are all in bed. It's a challenge helping the older two with homework, keeping Douglas busy doing something, all at the same time dealing with an extremely fussy, high-maintanence Alayna. Sometimes I just join in with her crying.

So, you are probably asking yourself "is she is teething or does she have something wrong with her?" The answer to that is "no" and "no." I have tried to document when these "outbursts" occur and see if there is a common trigger and I haven't found anything. We've been to the pediatrician for a complete check-up and all looked good. We tried putting her on an oral antibiotic for a possible ear infection, but that has not been the solution. She went back to Iowa City this past week and they also say her ears look good. We have also increased her food intake to make sure it wasn't hunger and that isn't the answer either. I think it's just Alayna.

After reading posts on our 1p36 Support Group site regarding this topic, I just think it is something many of the 1p36 kids go through. They sometimes cry a lot and the reason is unknown to the parents. Being unable to communicate may contribute to part of it and also being somewhat immobile. I am glad to know that we are not the only 1p family going through this. I am praying it is a phase and that "it too shall pass." I'm truly at a loss and it is very frustrating. I want a smily, giggly, happy baby and lately that has been a rare thing at any time of the day. Today, on the way over to Lexi's softball game, Alayna was crying pretty hard for the duration of the ride. Douglas was in the van with me and I could tell he was getting frustrated too. He said "Mom, we need a new baby." I said, "Why do you say that Douglas?" And he responded, "Not this one. This one cries all of the time." It is just as hard for our other 3 children to deal with this as it is for Dana and I. My heart gets sad. Sometimes, my world feels like a very lonely world. No one quite knows what we are going through.

Alayna has cried so much lately that her "voice" is horse and her arms are bruised from biting at them. Thankfully, she hasn't bit them hard enough to draw blood, but her bruises are pretty noticeable. And that is so hard to explain to people who have no idea what 1p36 Deletion Syndrome is. All we can do is reinforce not to do that and pull them our of her mouth. Let me tell you though that it is tough sometimes because she is strong and she gets really frustrated and nothing stops her.

Another issue that I've been dealing with is the feeling and knowing that we are a "different" family. I'm not sure if that is the right word, but you get my drift. I'm well aware that I'm still dealing with this process of acceptance. I thought I had that taken care of, but obviously not completely. I've noticed the last few times that I've been around people from our community or other families, I tend to withdraw. And especially around those families that have children close to Alayna's age. I'm just not my chatty, out-going, talk to everyone self. I say quick hellos and keep conversations short. After coming home from "Bookbag Night" at the kids elementary school I told Dana about this realization and how I don't mean to do it, but I think it's just my defense against becoming upset, crying, or facing the fact that Alayna is not developmentally appropriate for her age. He validated this feeling by telling me that he too has had difficult times. One occuring while at a close friends house watching their little girl a month older than Alayna run around and carry on. It is so hard and I'm not sure it will ever be easy. It's something we will probably deal with the rest of our lives. So, I would like everyone to know that if Dana or I seem distant sometimes, it is probably those defense mechanisms kicking in to help us cope. We do not do it intentionally, but please understand it is part of raising a child with special needs and the process of completely coming to terms with that.

On the "up" side, however, are the cute smiles and short, little giggles from Alayna. We love singing Itsy-Bitsy Spider to her because of her instant recognition to the song and the grin that comes along with it. Even during her fussiest, temper-tantrum moods, this song has been known to be the only cure that will snap her out of it. When she makes eye contact with her sister and brothers, Douglas especially because he is always in her face, and lights up with a grin, it melts my heart. When Alayna does something to surprise us and her siblings are the first to see it and they scream "Mom, look!" it is a very exciting moment. They too long for those little accomplishments that require so much hard work from Alayna. Watching her hold her sippy cup or self-feeder and see her excited that she is doing it herself is cool. We can't wait until she is totally cup feed and no more bottles. One of my favorite times is when Alayna is comfortable enough to be held over my shoulder and as I gently rub her back she just cuddles up and every one of her muscles relaxes.

There are many rewards that come along with raising a special child, but lately it has been tough. I am always the one saying take one day at a time. But in reality, that is a lot to ask of me sometimes! I am human and normal, daily activities are enough to trigger a thought into our families future. I can hear a wedding song on the radio and it's enough to send tears pouring down my face. I can see an advertisement for a college and that will also make me cry. I watch my daughter, Alexis, pitch her first ASA softball game and while I am so darn proud of her I can't help but cry and think of my little Alayna. Don't get me wrong, I am proud of Alayna, but in a different way. And it's this "difference" that I have to get past, again, not really knowing if that will ever be possible.

The emotional side of raising a child with any kind of disability is indescribable in words unless you are the one in that situation. No amount of money or services would ever be enough to ease that part of it. It can be a lonely place sometimes and societies ignorance sure doesn't help the matter. I've said it before that God has the ultimate plan. I wonder what that is every single day and I ask him every single day. And I sometimes ask him if he was sure he picked the right family for Alayna, especially during my crazy moments. And, yes, I still cry. As a matter of fact, as I type this, tears roll freely without effort down my face. I'm not sure whether I cry more for me or more for Alayna. I say my prayers every night asking for guidance, strength, and patience to get through the next 24 hours. I pray that things will eventually get easier and we will begin to be able to enjoy Alayna more and that her "moods" will pass. It truly is an effort for my entire family to just make it through each day. I pray to God that someday each one of the older kids will look back on this time and realize that all of the sacrifices made were to benefit the entire family and I hope they will understand the "hidden" stress their parents were going through. I pray to God to help me be a good mom because I doubt my effectiveness more than ever before. And I pray for all disabled children and their families, especially those on my 1p36 Yahoo support group, because without them I would be lost. They are my "people" who help me keep going. And lastly, I ask for forgiveness, because I'm the first to admit I'm far, far away from perfect.

I am sorry it took so long for a new post. And I just realized this is a long one. I hope to get things going again and I'll try not to keep you waiting and checking so long this next time.