How Abigail Learns

We began occupational and physical therapy when Abigail was just 5 months old. At that point we had no idea what we were in for. We had no idea how our journey would proceed. We simply knew we had a little baby girl who the doctors were telling us was way behind in muscle tone. Abigail was our normal and still is. We had no idea a five month old shouldn’t be doing these things. Thankfully we had some great therapists who helped us learn what we should be doing with Abigail to help strengthen her little muscles.

Abigail has always been progressing forward but at the slowest rate you could ever imagine. The last time we went to see our neurologist she asked how Abigail had been doing. I was so excited to tell her about all of Abigail’s progress in the months we hadn’t seen her. But putting it in words seemed so dismal. “Well she can kinda roll over now and she is making more noises.” It just didn’t sound that impressive, but if she could just live with Abigail for a few days you can see her huge strides of improvement. But to strangers Abigail is still a two year old who can’t sit, stand, walk or talk.

So how does Abigail learn? How does she get stronger? Repetition. Repetition. Repetition. We have been doing the same things with her from the beginning it feels like. Sometimes things click right away. It only took her a couple of times to learn how to fist bump and wave bye-bye. Teaching her a new sign for sign language usually only takes a few times as well. Now she does not correlate that the eat sign means she is hungry, but if you ask her if she wants to eat she does the right sign so we are getting there. But feeding herself has taken 18 months. We have tried everything, and then one day out of the blue last week she just picked up her goldfish and ate it perfectly by herself. I am not sure why she catches on to some things instantly and other things she still does not get even though we have been working with her for months.

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Either way, we have to be intentional with Abigail. And slow. You cannot ask Abigail to do something and then walk away because she did not do it. Chances are she will do it as you turn your back. Her processing time is slow. So it takes her a minute to wave bye when you tell her to. You just have to give her a chance to listen and process what you said. I like this about Abigail because it has taught me slow down. I am a rush, rush, rush kind of person. Having Abigail has taught me to pause now and then.

Abigail is a smart cookie. I think my husband put it best. Abigail is more and less than meets the eye. Let me explain. When a stranger first looks at Abigail he or she probably thinks she is a normal child. Then I tell them that she has special needs and cannot sit, walk, talk, etc. So then Abigail becomes a special needs child who cannot do anything in their minds. But she is so much more than her disabilities. Sure she cannot sit up on her own, but if you ask her to dance, point, find her belly, or laugh she can follow your instructions perfectly. She understands what people around her are saying, and I swear she can sense people’s emotions. She definitely knows when Mama is leaving and her physical therapists has told me multiple times what an amazing little sense of humor she has. Abigail is pretty fun to get to know and everyone who has spent more than 10 minutes with her just loves her!

Abigail’s processing time may be slower than others, she may not be able to physically compete with another toddler her age, and she cannot communicate with words, but everyday she is learning and growing in her own way. At five months old Abigail barely even cared about the environment around her. She could care less about toys or food or anything really. But to see where she is today, even from where she was a year ago is amazing. She loves her toys and gets so excited when her therapists brings out her big bag of them now. She is ‘talking’ up a storm and is wiggling everywhere. Her head circumference is in the 94 percent tile (her weight is only in the 10th) and we always joke about her huge head. But maybe it is just holding all those smart brains up there. I love watching her learn and I cannot wait to teach her more!

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We are on a Move

Well folks she is off! Well kind of. Abigail will not be winning any races soon, but she is moving. It is exciting to say the least. She can flip herself over, and she loves tummy time now. That in itself is a huge deal. Tummy time has been a struggle for us from the beginning, but lately she will stay on her tummy for an hour at a time. She can pivot around any direction she chooses. And she can push herself backwards like a champ. We are even starting to see her wanting to come forward. Her little legs are trying their hardest to get under her, but they just do not quite know what to do yet. Abigail has never used her legs a day in her life, so the fact that her legs even are attempting to do something is a miracle. I know this does not sound that impressive on paper. I mean we have a two year old who still cannot sit, stand, walk or talk on her own. But if you could have seen her even 6 months ago, the fact that she has this much mobility is amazing.

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Our little leap frog, learning to push herself forward!

To say we are excited would be an understatement. We have been waiting for some mobility for, well two years now. And Abigail loves it! She rolls and scoots and pivots everywhere now. I love just setting her down with her toys and watching her play. Every parent loves when their child reaches milestones. You smile the first time they sit, and cheer when they take their first step. A sense of pride just wells up in your heart. But imagine that your baby never sits on their own even when they are 9 months old. Imagine seeing other babies your child’s age crawling and walking while you are still trying to just get your child to play with a toy for a minute. It is very discouraging. We have waited for this for so long, and to see her with this limited mobility is huge. It is even more rewarding when you have to wait for things to come.

And while we are excited about her moving and growing in strength, we are trying to teach her there is a time to play and a time to sleep. Abigail believes sleep time is play time. She wants to wiggle and roll and play when we lay her in bed. It is cute but when it’s midnight and she is still rolling around it becomes not too cute. I am exhausted. She is exhausted. These late nights are wearing on both of us. We have taken her mattress out of her crib and lay beside her now and literally hold her down to keep her from wiggling. We are trying to teach her that bedtime is bedtime. Last night it worked. She was asleep within 30 minutes as opposed to the 2-3 hours it takes usually. Now we just need to get a bigger mattress and I think she may just learn to put herself to sleep.

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How I found her one morning this week. She was dead asleep, but had managed to turn herself around and still perfectly land on the pillow. How?

If you would have told me six months ago that this girl would be keeping me up until all hours of the night because she would not stop moving I would have just rolled my eyes at your positive craziness. But that craziness is coming true! Just today I was talking with Jordan, and he said, “Maybe this girl will learn to walk after all.” Just maybe we will have a child who will be mobile. We still have a looong ways to go. Right now a snail could beat Abigail in a race, but the fact that she is so motivated and excited to move means she will keep trying. Abigail will keep learning. She will only continue to get stronger, and maybe just maybe we might have a little crawler in our hands.

Now here’s to baby proofing our house. Yikes!

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Baby Steps of Intentionality

Be intentional!

It has been one of my life mottos for awhile now. I think I picked it up while working on camp staff at summer camp for a couple of years. It applies to a lot in life. Be intentional with your relationships, your work ethic, your faith, your self-care. The list is endless. So often I tend to get into my routines and I begin to just float through life. But by reminding myself to be intentional with every moment, I am reminded that I need to be fully present and aware in everything I do. Floating through life without being intentional with your thoughts and actions quickly leads you to places you never thought you would be. It can lead to discouragement, defeat, purposelessness, doubt, and fear. A little intentionality every day can make your whole outlook on life so different!

If anyone has taught me to be intentional it is my daughter. From day one we could lay Abigail down on her play mat and just leave her. She was not a cuddly baby. She is still the same way today. Even as I type this she is laying beside me just playing with her toys as content as could be. If we are not intentional about playing with her and doing her exercises she would be fine just laying on the ground all day. We have to intentionally take time to do all the things our therapists want us to do and still have fun too. Of course, these things are not a burden and we love playing with Abigail and taking her places, but she is not the one begging to go or running around like a mad woman driving us crazy.

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Abigail pushing herself under the table. She is a mess!

We also have to intentionally teach Abigail everything! Most typical children do not have to be taught how to feed themselves or sit or move. They just somehow magical pick it up and before you know it they are off and into everything. It happens so fast that as a parent you can barely keep up with them. But with Abigail, and many other special needs children, this is not the case. We have to intentionally teach her how to sit. How to hold a spoon correctly. How to get hair out of her own mouth. How to play with certain toys. And most of these things we have been teaching her for over 18 months now and she still cannot do them, much less mastered them.

Just this week our therapist wanted us to start putting toys just barely out of Abigail’s reach so she could start learning to come forward instead of always pushing herself backwards. So I sat down with her and put a toy just out of reach while she was on tummy time. Most children would learn to push forward and grab the toy easily. But Abigail just cannot figure out forward motion. She always pushes backward. So I had to get behind her and tuck her stubborn legs underneath of her and make her propel her body weight forward. She got the toy! So we did the whole process again. The third time I let her try on her own again. Well, she knew what she needed to do, but those pesky legs just do not work the way she wants them to. I shared a video of her on my Facebook wall. Those legs will always be an issue for us! After you have not used a body part for over two years I guess it takes awhile to figure out how to work it again, but maybe one day she will get those legs working.

But for today we are intentionally learning how to crawl. We are learning in baby steps. First strengthening our core, then working on our arms, and then one day we can get those legs fully under us and everything will click. Baby steps are slow. Baby steps are clumsy. Baby steps are unsure. But baby steps do eventually get you where you need to go, and we are making intentional baby steps of progress. I am a proud mama of a little girl who helps me be truly intentional every single day!

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The Game of Life

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Our family Cribbage board

We are a card playing family, and Cribbage has always been a favorite. I grew up playing Cribbage and now when I stay over at my parents’ house for a long weekend we always try to get a game or two in. If you do not know how to play Cribbage that’s okay. This post is not about that. Basically, all you need to understand is that those pegs pictured are what you count with. You obviously want to have the most points, and have your pegs in the lead. A lot of times though you get dealt not so great hands and your poor pegs lag further and further behind everyone else’s. In Cribbage you can get so far behind the winner you get skunked. It’s a very technical term. Basically, if you lose you don’t want to lose so bad you get skunked. See, it’s really a rather fun family game! And two fun facts about this particular Cribbage board: 1.) my brother made this by hand (pegs and all) for my mom’s birthday one year, so it’s a very special board. 2.) See those words my mom wrote on the board, “Heater’s Curve.” It is supposed to be my name not Heater. This is the particular spot on the board I always began to lose, no matter how far I was in the lead. It became the family joke that when I was approaching this curve they knew I was going to start losing, so Mom nicknamed it Heather’s Curve, or at least she thought she did. Yes, my own mother misspelled my name, so now it’s affectionately called, “Heater’s Curve.”

The game of Cribbage, and many games in fact, is just like life. Sometimes you get dealt great hands that make you feel good and help you win, and sometimes you get awful hands that do not move you ahead at all. You feel like you are stuck in quicksand of life, and you will never catch up to the people ahead of you. This is often how being a special needs parent feels like. Every time your child does something good or conquers a task you realize that your friend’s baby did that six months or two years ago. As other children progress around you, you feel as if you are chugging as you hard as can and still are not able to gain any ground.

I am so excited, and so is everyone else because Abigail loves to give hugs now! It is precious and makes you feel extra loved when she wraps those little arms so tightly around your neck. She is truly the best hugger! She is beginning to eat better and better and even attempting to eat on her own in small ways. She is rolling from side to side and trying to sit up and move so much more. There are signs of progress everywhere. But right when we are gaining so much progress, I took her to the eye doctor because we have seen some small concerns with her eyes twitching, not focusing, and going cross-eyed. Well it is a good thing I took her because her muscles in her eyes are very weak. While the eye itself is as healthy as can be, the muscles are not controlling her eyes properly. So, soon Abigail will begin wearing glasses to try to strengthen those muscles. She has four months in glasses, and then if there is no progress the next step is surgery.

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When we feel like we are gaining ground with negative genetic testing and physical progress, we are hit with this reality. Our little girl may be faced with eye surgery at the end of the year. Oh, we are praying these glasses are miracle glasses!! But in our two-year journey we have seen this over and over. We gain some ground and are reassured everything will be okay and we will overcome anything, and then we are told she has very low muscle tone, it might be a genetic problem, there are still no answers, or that surgery may be the only solution. The life of a special needs parent is one big rollercoaster of emotion, filled with excitement, worry, and the unknown.

Through it all though I am thankful that life is not just one big game. We are not pawns being pushed around a board. Through it all God has a purpose for each and every person. He knows what we are going through, and He has a beautiful plan unfolding everyday. Is it frustrating? YES. Is it lonely? YES. Is it what I would choose? No. But it is still a beautiful plan, and I trust that with all my heart. In the end, I am thankful for this plan, this path of life God has set us on. It is making me a better person, a more trusting person. The last two years has changed me, and giving me a whole new perspective on life. Do I want this for my little girl? Never in a million years, but this is the life God has blessed us with and we will take each day and be thankful for the gift it is. We have so much to be thankful for, and I will not ever forget that!

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Our happy little blessing!

My Little Tortoise

I love recording memories during this time. Especially when Abigail is changing almost overnight! I have photo albums, an app, journals, and baby books (and this blog of course) that I use to record this time in our lives. It might seem like overkill, and I know if a second child comes along all that might not be possible to keep up with. Hopefully my poor second child will not be forgotten and left out of baby memories, at least I am going to try to do my best when the time comes. It is wonderful to go back and look at what was happening a year or two ago, and see where we are today. This time two years ago I was about 38 weeks pregnant, and ready to meet our little girl. How time flies!!

But as I sat filling out Abigail’s baby book last night in preparation for her second birthday, I came across blanks everywhere in the ‘Firsts’ section of the book. When was the first time your baby sat up? When was the first time your baby crawled? When did your baby take their first steps? When did your baby first hold their sippy cup? All blank. But, oddly it brought a smile to my face. I just wanted to ditch the baby book and create a whole new baby book unique for Abigail. The questions would read more like, ‘What brings a smile to your face when you see Abigail? What is she good at? What are some of Abigail’s skills?’

Abigail has the ability to do so much more now than she ever could! In just the last few weeks our little girl has learned so many new things. She is responding to commands. She can now lift her leg, blow kisses, clap, and lift her head when you ask her. It is exciting to be able to communicate with Abigail and know she is understanding what you are saying. She is also blowing tummy time out of the water! This baby used to hate, and I mean cry when ever you even attempted to place her on her tummy, tummy time. She could tolerate about three minutes and then she was done. She would lay her head down in defeat because she just did not have the strength to do it any longer. Today, she laughs and smiles and plays while on her tummy, and she never complains or lays her head down even after 10 or 15 minutes!!! Her physical therapist is even trying to teach her how to army crawl in hopes of giving her some mobility soon! It gives me hope for her future.

I believe Abigail will be able to talk, roll around and sit some day. It might be tomorrow or it might be 4 years from now but she shows she has the potential to do these things. Her trunk and arms are getting stronger each and every day. She is getting louder as she babbles to us. In the car I feel like sometimes I need earplugs with her constant squealing. She is rolling from side to side and flipping over from her back to her stomach and visa versa when she decides she wants to. I know we have the potential to have a roller soon and that excites me!!! My baby could be independently mobile!! Honestly, I would just love for her to be able to sit on her own. Then she could play so much easier and we could do so much more with her. We just have to get Abigail some abs!

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It is a s-l-o-w process. We have been working on tummy time since day 1. We have been working on prop sitting for almost 18 months. And we have been working on talking and babbling for about a year now. It has been a long two years of waiting to see what exactly this little girl is capable of, and it is amazing to know we still do not know. She has so much potential in her tiny little body. But that is what keeps me going – the potential for change, for improvement, for independence. To imagine Abigail one day being able to communicate with us or being able to move herself around brings tears to my eyes. I know this day might still be a long ways coming. I mean she has been able to prop sit for over a year now and not once shown any desire to even attempt to sit on her own. Did I mention she is also a little stubborn and independent? If anyone asks, she got it from her daddy. Unless Abigail wants to do something, she will not do it. Trying to get that child into her positions to exercise her is a trip. For a baby who seems to have no muscle tone, she is STRONG, and she will fight you with all she has to not be put into a certain position. But this is also good because at least she has muscles to fight with!

Abigail reminds me of the tortoise in the “Tortoise and the Hare” story. All the other toddlers her age are running laps around her right now, literally. But Abigail is not concerned with them. She is marching steadily on in her very, very slow speed. Still gaining ground everyday, but you wonder if she will ever get to the finish line. Right now it does not look like it most days. But I just think of the end of the story. It is the tortoise that wins the race. I do not say that to say that all the hares will lose, but maybe the tortoise had something going for him. He enjoyed every leg of the journey. He was not rushed or hindered by anyone else. He did not try to keep up with his neighbor. He was on his own journey, loving every minute of it and honestly he probably did not think he would even win himself. Maybe, as always, my little tortoise will teach me something yet. This life is not about how fast you get to the end. We will all get there one way or the other. But life is the journey. Am I enjoying each day? Am I living each day to the fullest? Am I doing my best in everything God has called me to? Abigail may be my little tortoise, but maybe that tortoise will be a winner yet!!!

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