A Trip to Chili’s

How do you explain to a two-year-old about special needs? How do you explain to her that a little girl her own age cannot do the things you can do because her legs don’t work quite right? We came face to face with this situation this weekend, and I have been pondering these things myself.

My mother-in-law and her husband took Abigail and me out to dinner Saturday night just so we could get out of the house for a bit. We had been home for over two days and I was going a little stir crazy, so we all packed up and went to Chili’s down the road from our house. Well apparently everyone in town was stir crazy or didn’t want to cook (or couldn’t because they didn’t have power) because everyone was at Chili’s. So we sat with another family that came in before us in the waiting area for about 15 minutes. What a 15-minute wait that was!

The family consisted of a young mother, her two children (a little girl we soon discovered was only two months older than Abigail and her little brother who was about 6 months I am guessing), and the mother’s parents. They were a sweet family and we instantly started talking about the snow and road conditions and power outages. My mother-in-law was holding Abigail, and I was across from them in the other seat. They were sitting right beside the little girl and her mother.

The little girl and Abigail were having a staring contest. You see Abigail loves watching children. I think they fascinate her. The little girl finally got brave enough to ask Susan (my mother-in-law) what Abigail’s name was, so Susan told her and asked her name. She was the cutest little girl with light up rain galoshes on. Susan asked her how old she was and she said three, so the mother had to chime in and say she was only two. We couldn’t believe that she was Abigail’s age. Her mother said she was in the 97th percentile. Abigail is in the 10th, so you can only imagine what the size difference between them was. I explained to the adults that Abigail had special needs, so that might be one reason she seemed so tiny. Well the little girl couldn’t comprehend Abigail was two just like her. She kept saying she was only one, and Susan kept telling her, ‘no she’s two just like you.’

Well everything was going peachy until the little girl asked if Abigail could get down and play with her. Susan told the little girl that Abigail couldn’t leave her lap. Her mother tried to tell her that Abigail’s legs don’t work like hers and of course the why question kept coming. You could tell everyone was getting a little tense with not knowing what to say. Then the little girl asked if Abigail could sit beside her. Of course another round of ‘no’s’ and ‘why not’s’ commenced. So Susan finally told her she could play with her but Abigail would have to sit in her lap. I knew this was going to go poorly the moment that little girl stepped towards Abigail. Abigail loves looking at kids, but she does not like kids in her bubble much less touching her. Well that sweet little girl so lovingly held Abigail’s hands. It truly was the cutest thing, and I wished I could have taken a picture. But all the touching was way too much for Abigail.

I calmly got up from my seat anticipating Abigail’s freak out, and it came quickly. Her bottom lip quivered (a sure sign tears were coming). I scooped Abigail up, and the mother was like did my daughter do anything? “No, not a thing. She was the sweetest to Abigail, but Abigail cannot tolerate children. I am so sorry.” The little girl’s face crumbled. I told her she did nothing wrong and that Abigail was going to be okay. I had to walk away to calm Abigail down and when I got back the family had been seated. I told my mother-in-law everything was good. Abigail was back to laughing and dancing to the holiday music in no time. And when we left we stopped by the family’s table and wished them a goodnight. The little girl waved good-bye, so I knew she was okay too.

But goodness, what a situation! It really was not a big deal probably to anyone else, but those 10 minutes rocked my world. This is my life. No one knows how to react when you say special needs. I felt so awful for that little girl and her family. I know they had no idea what to say or do to explain Abigail. I was no help either. Looking back I should have taken Abigail and showed the girl how Abigail’s legs don’t work right. I should have held her and had a ‘dance’ party in my lap while the little girl stood beside us. There are 15 different things I could have done now looking back. But I sat there and watched this family meet a special needs little girl for the first time with no explanation.

I know it’s not a big deal. They probably won’t even remember us tomorrow, but I will never forget this. I know situations like this will come again. Children will ask questions, and I will have to answer to them and their families. I will have to explain why at two a little girl cannot walk or talk or even sit. I don’t know if I will have all the answers, but I hope to help and encourage as we go. Explaining special needs to a two-year-old is tough, but I hope that little girl stays as loving and sweet as she was that night. And I pray that one day Abigail will accept a sweet handhold from a fellow pier. That little girl’s hand in my child’s hand tonight meant the world to me. I know it was brief, but it shows bridges can be gapped and my daughter can be accepted. Such a simple thing, but such a huge Christmas blessing – a simple hand hold from a sweet little two-year-old girl at a Chili’s restaurant.

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You Would Too

Do you remember that oldies song “It’s my Party”? The lyrics go, “It’s my party and I’ll cry if I want to. You would cry to if it happened to you.” I know it’s a weird connection but that’s the song I thought of as I began to write this blog last night. So many people say how I’m a great mom or how Abigail’s blessed to have me. Maybe I am. Maybe she is. There’s a ton of special needs parents and care givers that are amazing!! I’ve met only a small handful and their stories need to be heard by everyone. Special needs parents are some of the most amazing people I’ve found out. But like the song goes, if you had a special needs kid you’d be pretty amazing too.

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Just a few days after we got home from the hospital before we found out about this journey we were about to be on.

Let’s face it. If you’re a parent you are amazing. The responsibility God has given you to raise your child or children is one of the biggest under takings you’ll ever have. You are raising the future in your home right now. It’s huge!! It’s scary!! And often it’s a rollercoaster of emotions. Parenting does not come with rule books and how-to guides. And as soon as you kind of think you have one kid figured out another child comes along who is completely different. Parenting is a privilege and a blessing, but one that should not be taken lightly. So every parent who loves their child unconditionally is amazing in my book!!

But as a special needs parent you just have a few extra responsibilities. You often have a list of doctors to call. Often you have to deal with insurance companies and other financial assistance companies and organizations. You grow to realize there are not a lot of helpful people out there to assist you, so you learn as you go and learn to be assertive and to be your child’s biggest advocate. You are your child’s voice in a medical field, which is often full of people who are just after the next dollar or who think your child isn’t as high a priority. If you had a special needs child you would learn all about the ends and outs of the medical field too.

 

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Then at two months old we got the news about how our perfect little baby may have some vision issues, and our special needs journey began.

A special needs parent often has to be more accommodating and a quick problem solver. A lot of special needs children have physical and social limitations that you have to work around. I know a lot of children with sensory issues who cannot handle loud places, even crowded restaurants. Parents bring noise canceling headphones to help them in those situations. For us, Abigail cannot sit up. For the longest time we carried our own chair for her to sit in when we went out. Now she is stable enough to sit in high chairs at restaurants. But often the hostess will not ask us what we need, so she will get a booster seat for the booth. Abigail cannot sit in a booster seat because she would slide right out. So then I have to go chase down someone to replace the seat with a high chair. It’s a mess. But if your were a special needs parent you would learn to accommodate in a world that is not often accommodating to people with special needs.

Often a special needs parent has to deal with medical issues with their child. Whether it is seizures, a g-tube, or a host of other symptoms, parents have to walk through these scary things with their child. Not to mention the surgeries that often come with these medical issues. We have been blessed not to experience any medical issues with Abigail, but I have talked to many a mother who has and it is always an awful part of their story. One mom even said they feel as if they are going through it with their child. As moms we are often more scared and hurt and worried about our children than they are. But if you were a special needs parent you would do all this too if you knew it was best for your child.

 

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While we don’t have any medical issues, Abigail has done a lot of testing. This was taken at the lab while we waited for her blood to be drawn for about the fourth time. I was over it – she was as happy as ever.

Often as a special needs parent you have to help your child in ways you don’t expect or teach them things that should come naturally. They are much more dependent on you. Special needs children need help doing even simple things like getting dressed and using the bathroom. I still have to feed Abigail all her meals and give her every sip of water or juice she drinks. We aren’t even considering potty training, and diapers may be forever in our future. We still carry Abigail everywhere she goes. I have to teach her how to play with new toys and how her hand can make a fist. But if you were a special needs parent you would do all this too.

Lastly, often our dreams and expectations of our children crumble before our eyes. No one plans to have a child born with autism or Downs or a genetic disorder. Often parents do not know anything is the matter with their child until they are months, if not years old. So by that time you have planned for them to be your older child’s best friend, or a star athletic or a well-known doctor. Every parent dreams about their child’s future. And often as a special needs parent these dreams are broken as diagnoses come along. But that doesn’t mean we don’t dream. It is just that our dreams and goals are very different. My dreams for Abigail has changed dramatically in the last few years. Now I want her to be able to walk, to have accepting friends and amazing teachers and doctors. Things I would just take for granted when I was pregnant with her. But if you were a special needs parent your would adapt your dreams and expectations too.

The fact is that I am not anything special. God didn’t gift me with any extra abilities to care for my daughter. I am not amazing in any way. In fact I mess up a lot. I am lazy and don’t do everything I should. I don’t want to deal with doctors so I don’t call all the time when I should. I want to do my thing sometimes and not spend every waking moment helping Abigail. I am selfish. But I am a mother of a special needs daughter, and I will do anything I can to help her achieve her very best. Yes, we have to do things a little differently, but this is my normal. Abigail is my normal because I have no other typical child to compare her to. I would be scared to be around typical toddlers because I don’t know what they do. Around here we just take one day at a time and enjoy the small victories. I am thankful for my daughter and for being allowed to be her mom. Abigail teaches me more than I ever thought she could. Her joy and determination are contagious!! I am thankful to be on this journey with her and if you were a parent of a special needs child you would be blessed in ways you couldn’t imagine too!!

 

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Her Stubbornness

Stubbornness runs in our family. My grandparents were and still are entrepreneurs, making glass wind chimes now for over 40 years. Jordan’s grandparents are still active and going and his grandfather still works 8-5 at his job at 72 years old. The stubbornness shows itself in our parents as well. And goodness does it show up in us! We can never decide on who is more stubborn between Jordan and me because we are too stubborn to admit who is more stubborn. We are a mess! So then you have two very stubborn people make a baby, and guess what? That baby is as stubborn as both parents put together.

Stubbornness is often seen as a bad thing, and often it is. It prevents you from seeing the other side of the argument.  It keeps you from listening to wise council. It stops you from enjoying things you could otherwise enjoy. But as stubborn as Abigail is, I am very thankful for that quality in her. Sure it is annoying when you try to tell her no and she just keeps doing what she was doing while laughing in your face. Sure I would like her to actually do what I say instead of what Abigail wants to do all the time. And sure we butt heads a lot and I get very annoyed with her. But that stubbornness in her is what makes her a little miracle child.

Let me explain. So our journey all began at Abigail’s two month check up. Everything was great and we had a perfectly healthy little baby in our arms, except the doctor told us he was very concerned with her vision. We knew she had wonky eyes, but we figured all newborns had poor vision, well apparently not this bad. Here are some pictures from Abigail’s first year. You can see how she constantly looked up.

We saw two eye doctors and one neurologist at this point and none of them could explain Abigail’s vision. But by 18 months her eyes had corrected themselves with no help from anyone. Her eyes simply came down by themselves. We worked on some tracking exercises and things like that with her OT, but that’s it. Her eyes still get cross eyed and a little shaky today so that is why Abigail wears her glasses, but compared to how they looked when she was 3 months old her eyes look perfect.

Her stubbornness is vital for Abigail because without her motivation to want to move and play and be little Miss Independent she would not be improving. Yes, her therapists are amazing and I am beyond grateful for each of them. Yes, working with her at home helps. But it is Abigail who wants to pull herself around. It is Abigail who wanted to start feeding herself. We tried for almost two years to make that kid feed herself and she never would hold a scrap of food, and then one day I just laid some goldfish on her tray to feed her and she picked them up and put them in her mouth like she was a feeding expert. Until Abigail wants to do something she does not do it. I know she can get herself around and I try to make her pull herself if I just go in to the next room. But she refuses to move until she wants to.

I truly believe if Abigail has a will she has a way. If she is willing to work and move and play then she does. She has shown that these last few months. Her awareness and wanting to move around has come out of no where and now she scoots and pulls and plays like never before. I still do not know where the motivation to move came from, but I wish I knew! But when the day comes for her to be ready to stand on those wobbly little legs of her I know she will be stubborn enough to figure out what she needs to. I always tell people that for being one of the most dependent toddlers in the world, Abigail is the most independent little thing you will ever meet. I know that spells trouble for Jordan and me as she gets older, but for now I love that she is a little stubborn, independent little blonde headed ball of motivation.

 

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Finding Our Voice

Last night we went out to dinner at a local Mexican restaurant (a family favorite around here). After Abigail finished eating, she played in her highchair and talked and talked. And boy, is that girl getting loud! At one point I went to the restroom which was in the back of the restaurant. I could still hear Abigail as I walked into the restroom, and she was in the very front of the room. I told my mom the other day that Abigail does not understand what an inside voice is. I think she has discovered she can make noises and she loves to hear herself. But we like it too! They are just baby babble noises, but they are cute and happy just like Abigail.

The funny thing about Abigail is that she rarely talks while we are out and about. Most people would think she was shy, but I think it is because it is such a big world out there. There are lots of people to take in and things to process, and her little eyes and brain love to observe and take everything in. There is no time for talking when you have so much to observe. But even though she does not let her little voice ring everywhere, she still flashes that cute little Abigail smile to all who talk to her. She’s got the head tilt/smile down pat!

As she gets comfortable around you Abigail will talk more and more. So I know she feels the safest at home. But the most amazing thing was that this week in Music Class she actually talked some. It was just one quick loud babble. I’m sure no other parent even heard her, but I did. She was down on the floor wiggling around and let out a cute little noise while we were all singing. It made me so happy because it means she is getting more comfortable there even among crazy little toddlers. That’s a BIG deal!! I’m excited to see if she will keep ‘singing’ and talking more as we continue to go every week.

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Playing in Music Class.

Abigail is definitely the loudest at home. After dinner is her crazy time, and she loves to wiggle around and talk to us. I just cannot believe how loud she can be! She is truly finding her voice, and hopefully that voice will turn into sweet little words one day. I want to hear all she has to say and see what she is learning. I want to see her explore her world and watch her express her emotions (yes, even the bad ones). I want to know what she is talking about and what is going through her head. It is funny how what you say and what you talk about shows so much about your personality. I have had lots of time to observe a little girl who has no communication. I can tell you a lot about her and her little joyful personality, but I really don’t know how completely because I can only presume to know what she is thinking. There’s a 50/50 chance I am right or wrong. That’s a scary thing.

So far we don’t have any real words. There’s some ‘ma ma ma ma’s’ and some ‘da da da da’s’ mixed into the babble. Every once in awhile she will say bye at the appropriate time. That’s the cutest with her little backwards wave! But that’s it. But goodness the babble talk is exciting. She wants to talk so bad and she loves to hear herself. But while we wait for words to come we will enjoy the babble. Our speech therapist is helping us learn sign language and giving us ways to help with her speech. When they are this young with no sounds, speech therapy is a lot of simple play. I am so excited for Christmas this year and all the new toys we will get. I think she will love having new things to play with even though I’ll have to teach her how to play. But all these toys will help with her speech and that’s exciting. So here’s to learning new things every day and to trying to get this cutie to talk more and more!!

 

Toddlerhood

I love this stage with Abigail. She is learning so much, and she wants to learn. I often feel inadequate to teach her because I don’t know what she is capable of, and I often don’t know how to teach her. But I am glad she is willing to learn with me and be patient as I learn with her. She picks up things so quickly whether it’s a new sign for communication or how to make her body move the way she wants it to. Her therapists are so pleased with her progress, and they are working just as hard to get her to sit and grow too! I mean just look at her sitting on the steps. She looks like such a big girl now, and I love it. My little baby is growing up slowly but surely.

As much as this is an exciting time for us all, it is also a frustrating time. We are at a weird stage right now. Abigail wants to be a toddler so bad. She wants independence and freedom. She is smart and growing everyday. From the outside she looks like a big girl. But physically she is only at about a 8 month old level (well an 8 month old who can’t sit or stand yet). It’s tough. It’s frustrating. Do you know how hard it is to play with toys when you can’t sit yet? We are limited by what we can do. Even as I took the picture of her sitting on the steps, looking so big, she fell over before I could catch her and hit her head pretty hard against the wall. That’s our life. A mix of wanting to be a big girl, but being limited by what she can do. I am just glad she has been a champ so far and is taking things so well.

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Yes, that is my toddler lifting a 2 pound weight. No, I do not let her play with weights. She just happened to find them during one of my workouts. But she can lift 2 pounds!!

I think the worst thing for us right now is not the lack of physical ability, but the lack of communication. Because we have no way of communication we get frustrated at each other. She’s beginning to want certain things or not want certain things but I’m not sure what she needs all the time. She is becoming more and more aware of her environment which is exciting, but that means she is almost waking up cognitively. She can get sassy sometimes with what she wants or does not want, and I am struggling to keep up with all her new awareness. Since I’m with her all day I can usually keep up with her needs, but there are times I have no idea what she is thinking. Thankfully we are slowly learning signs, and I pray her speech continues to improve so I can help her. I do not want her physical handicaps to slow down her cognitive development.

Bed time is another frustration for us right now. She seems to never be tired, so at 9 we make our way up to her bedroom. We read a book or two and sing a song then it’s to bed. I have to lay beside her because she scream cries if I leave her side. And I swear she has no idea how to cry because she never does, so she then gets all chocked up and it’s just a big mess. So I lay beside her and she wiggles and tossed and turns. It takes about an hour for her to finally go to sleep. So now it’s about 10:30 and I’m tired and frustrated. I miss time with Jordan in the evening. It’s just a big mess. So we are attempting some changes this week to see if they help us all. I hope they help!!

But even with all this newness and learning going on Abigail is so happy all the time. Sometimes I wish she was not. I know that sentence is weird, but sometimes her constant good moods are a detriment for her. For example this past week was r-o-u-g-h. But she seemed like a champ the whole time. Unless you know her super well you would have no idea anything was wrong with her. We started the week off constipated. It’s a struggle we often have since Abigail doesn’t move a lot. But she hadn’t gone to the bathroom for a week and the pediatrician put us on Miralax. So now I’m a worried mama about that, but of course Abigail just continues to eat like normal and not cry. I could tell she was a bit off because she was clingy and not as talkative but no one else would see that. Then this weekend we had a wedding in our family and her whole schedule was thrown off! She did not sleep much. She did not eat like normal. She was cooped up a lot. Nothing was normal on top of being constipated. What a weekend for us all!! But through it all she just laughed and was her normal self. Only at the wedding reception did she start showing the wear and tear from the long week. And then she simply just wasn’t smiley. She’s a mess!

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Her sleeping off her hard weekend. She slept so much after the wedding, and I am so thankful!

But that’s toddlerhood in our house. It’s a weird mixture of growth, excitiment and frustration. I have a two year old who has a lot of struggles other two year olds have, but they cannot be treated the same way. I have a two year old who wants to learn and be independent, yet is highly dependent on me. I have a two year old who wants to be social, but cannot express her needs. I have a two year old who often is tired or hungry, yet is laughing and smiling so most people have no idea that she really needs a nap. This is our life in toddlerhood for now. I hope Abigail continues to progress and grow. I love seeing her personality bloom. I love seeing her explore and learn. And I love that she is becoming a big girl day by day. But I also hope her limited communication and physical ability does not slow her down. I think every parent of toddlers would tell you every day is a rollercoaster, but to see that tiny little one grow into a little person is something I would not miss for the world!

My Man

Back when we were just children in the stages of liking each other I once told this boy that I thought I could follow him anywhere. After just knowing him for a short period of time I knew this kid could be trusted. Then less than two years later I was looking at that kid right in the face and promising to be his forever until death do us part in front of God and man. I call us kids back then because even though it has only been three and a half short years I feel ancient. We have always been two mature individuals, but the last few years has aged us.

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My handsome groom on the day I married him! I am so thankful he picked me!

I met Jordan at college when we were both resident assistants. I caught his attention with my weird testimony and he caught mine when he paid attention to my amazing athletic skills on the volleyball court. I am kidding about the athletic skills by the way, but when there’s a cute boy out there who is willing to laugh at you then you go play whether you stink or not right? Well at least he saw something in me, and to this day I am still not sure what that is. Our relationship moved fast. We lived on a tiny school campus and within two months we knew we would be married. I had a near death experience and that boy I only had been dating for maybe six weeks stayed by my side in the hospital. It truly was the experience that changed our relationship I think.

But here we are almost four years into marriage and he is my best friend. I have learned a lot about him and a lot about marriage. Things like we cannot have the same blankets and that he is truly a nerd on the inside. Things like boys and girls are very different. Things like what unconditional love truly is, and how it feels to be in a partnership with someone. Things like how selfish I am, and how Jordan never cries even when Mufasa is plummeting to his death. And so many more things I could not even begin to list.

This man is loyal through and through. He works so hard for us so I can stay home and take care of Abigail. But even after a long day of working two jobs he still comes home and spends time with his family. Jordan is not a man of much emotion, but that little girl

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One of my all time favorite pictures of these two. They used to look just alike, but he just adores her!

of his brings out the worst in him, as he would say. I have seen him cry over her (which is a truly rare event). I have seen him laugh and smile like he never does with anyone else. She may not always reciprocate the love, but I know that man would move mountains for his little girl if she needed him to. Jordan is our strong rock, and when my emotions are everywhere I know I have him to steady me. He is my encourager and my personal comedian. He can make me laugh more than anyone.

Most of all though Jordan is my race buddy. The Bible tells us we are in a race. In Hebrews 12 it reads, Therefore, since we are surrounded by such a great cloud of witnesses, let us throw off everything that hinders and the sin that so easily entangles. And let us run with perseverance the race marked out for us, fixing our eyes on Jesus, the pioneer and perfecter of faith.” And I am thankful I do not have to run this race of life alone. I have a partner every step of the way. He has experienced the same exact things I have and we have held hands through every disappointment, every failure, and every step along the way. I am excited to continue to run along beside him. Sure we will see a lot together – the good, the bad and the ugly, but I am so excited to grow old with my best friend. I once told him I could follow him anywhere, and that’s what I plan to do. I will follow him as he follows God. And wherever God may lead us we will be together. 

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Miracle Glasses…Maybe

The last month we have seen some big things happening with Abigail. She can now roll from her tummy to her back and her back to her tummy with ease. She can pull herself forward with her arms and push backwards, and she’s actually getting faster everyday. She wiggles around in circles and plays with her toys. This weekend she even tried to pull herself up on the furniture. Her progress is amazing! And it has happened over night. I mean a month ago she couldn’t even roll over by herself, and now she is scooting all over the living room and into everything.

Jordan and I were talking the other day about Abigail’s progress. Do you know that in a year or two she could be walking? She could be caught up physically. Watching her progress these last few weeks has given us hope that maybe she will be able to catch up eventually. We are working on getting her some kind of equipment piece to help strengthen her legs. Her arms are so strong now and we just have to get those legs to catch up. Jordan told her she needs to stop skipping leg day.

We still have a long ways to go. She still isn’t sitting on her own. Her legs don’t do much at all so she isn’t crawling or standing or walking of course. But these things have a chance of coming along as she continues to learn what her body can do and as she continues to get stronger. She’s growing mentally too. I know even if she started walking tomorrow she still would be very far behind. Her speech is coming along. She loves to babble and ‘talk’ to us. But she still cannot communicate at all. Compared to a normal 2.5 year old we still have a long ways to go. But this journey is taking a turn for the better and it is exciting to have a front row seat to Abigail’s growth.

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So why is she progressing so fast now? Why has it taken over two years for her to just begin to want to be active and explore? Is it the glasses? Because her vision is straightening out is it helping her to focus and move better? Weirdly enough about the time we got our glasses and started patching her weaker eye is the time she started to massively improve. It could be just a coincidence but who knows? Is it because her arms have been getting stronger so now she can move? Did something just click in her brain and now she wants to discover? I have no idea. It probably is a combo of everything plus therapy. But for whatever reason she is improving and I love it!

We may never find out why Abigail is the way she is. She might be the world’s most average and normal eleven year old and we look back and tell her she was the weirdest baby. But today she is an amazing baby with a willpower and drive like non other. And I am a proud mama. Abigail encourages me to not give up daily. I’m a quitter at heart. If something is not easy or I’m not good at it I would rather just quit. But Abigail’s strength and motivation to keep trying inspire me to work harder and try things that are hard. Today I am thankful for progress. Even slow, baby steps of progress are amazing to watch! I am thankful Abigail is not a quitter, and that she wants to learn and grow too. And I am thankful for those little pink glasses that might or might not be helping her, but they are the cutest things!

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