Special Needs, from the Other Side

The central struggle of parenthood is to let our hopes for our children outweigh our fears. 

- Ellen Goodman

I consider my son to be an individual with special needs. Although he's never had any formal diagnosis, he has experienced many challenges in his four years of life. In addition, he has participated in various therapies and interventions in an effort to "treat" these challenges.

I mentioned in a previous post that it was early in O's life that I noticed differences. Although each one alone was nothing to be concerned about, when I put them all together, it created a very different picture. A picture that caused me to seek help from my pediatrician. Ultimately, I knew what I wanted. I wanted what I had given to many parents and students throughout the years.  I wanted him to be evaluated by various professionals in order to understand his areas of weakness, so that we could intervene.

We began with speech therapy, as O was unable to make any sounds without significant struggle. He was found to be developmentally delayed in the area of speech and language. He had limited sound production and, although he could follow any direction and understood many words, he could not produce any. He began speech therapy in December 2009 and soon after began receiving educational intervention, first in our home, and then within a parent-child group.

As a psychologist who works with parents of children with special needs, I had been trained in the "stages of grief" that parents go through when they discover their child has special needs. Personally, I don't recall experiencing any of these typical emotions. Maybe because I had known for a long time that something wasn't right, and I didn't feel any grief, just validation. It also could have been because I was so focused on lining up the evaluations, rearranging my calendar and scheduling the therapies, that I really didn't have time to feel any emotion.

Another thing that I didn't do early-on was pray about O or his challenges or how to handle them. Yes, we had people praying for us, but I rarely prayed about the situation myself. Maybe because I thought I knew what to do and could handle this special education thing alone. I was so caught up in the "to do" list, the things that needed to be done, that I didn't take the time to pray. There  was definitely a disconnect between me and God during this time, after all he already knew what was going to happen, so what were my prayers going to change? My only hope, I thought, was to do it on my own. I am so grateful now that others were praying, especially since I wasn't. This was not something I could handle on my own!

As time went by, I noticed more and more differences between O and other boys his age. He was not very active and resisted certain activities. He would not go near the swings and held on with all his strength to the wall when using the small step that led from the house into the garage. The bath water was always too hot, he wouldn't go near any stuffed animal, and it hurt for him to get dressed. He wouldn't use paint or playdough and cried to be changed if he spilled even the smallest amount of liquid on himself. And so much more. It was near his second birthday when we enlisted the help of an occupational therapist. It was here that I heard familiar terms like "sensory seeking" and "sensory avoiding" and was introduced to terms like, "motor apraxia" and "gravitational insecurity."

In my profession, I had had plenty of experience with speech pathologists, occupational therapists, special educators, etc. However, to experience all of those people from the other side of the table, as a parent, was quite different. I had heard the terminology. I knew the law. Now, I knew the emotion. It had finally become more than a "to do" list.

Although all of O's therapies and official interventions have ended, he will always have special needs. Although he does participate in many of the activities that he used to avoid, some of them he simply tolerates, but doesn't really like. And, although he now has excellent language skills, I continue monitor his language development, just to make sure he doesn't fall behind. Each day we adjust our lives to him and his needs. It makes ours lives easier to make that adjustment, to avoid meltdowns and crises. I am forced to think ahead, about every situation and how it might impact him and then I plan and hope that I did enough to avoid the negative effect.

The next big step is the one that I have feared the most, even since the beginning...O entering the public education system. I work in public education and I know that being different is difficult. But, that is too much for me to think about now. I still have a year to process all the implications. So, I'll have to save that for a future post.

I'll leave you with this...a link to a poem entitled, Welcome to Holland, which describes one mother's view of having a child with special needs. As someone who has worked in special education for nearly 15 years, I have read this poem many times. And, while this mother's journey is not the same as mine, I feel like I understand her journey a little more now that I have "visited Holland" myself.

The Big Picture

Last week was full of discouragement. There was nothing direct, no specific words anyone used, no specific event that occurred. In fact, I received many encouraging words from my husband, family, co-workers and friends. My discouragement was internal, a battle that I often wage, but this week seemed worse.

Mostly I struggled with letting go, not being in control. Especially, in the case of this blog. Although I know people are reading, as I have had several comments and "likes," I want to know who's reading, who's sharing, if I am making an impact.  I want to know if what I'm saying resonates with you or anyone you know. I want to know if what I'm saying sounds crazy to you. I feel like I need more feedback. Honestly, I want to feel like I have some sort of control over what's happening here in this space. And, even though I know that I don't, the illusion of control is sometimes nice.

Control. I think it's one of those things that we all want, that we all desire. I know that it's true for me. But, how many things in my life do I really have control over? Not that many. If I'm truly honest, probably none! And, I need to figure out a way for that to be okay, because if it's not, I will continue feeling like I did last week...discouraged, anxious and unworthy.

Intellectually, I know that I need to let go. Especially since I have someone, some thing that I know is in control. That should make me feel better, right? Honestly, sometimes it does and sometimes it doesn't. In particular, with this blog. It's one of the things that I need to just let go. Especially since I believe that these are really not my words. These are words that come to me while I'm walking or running, driving or when I'm trying to sleep. I write them down so that I can process through them, and in the hope that someone else might read them and be impacted by them. But, I have no control over how many people read or how many people are impacted.

Control. It's one of those things I think everyone wants a little more of. It's one of the top reasons why adolescents and young adults develop eating disorders, because something in their life has made them feel out of control and eating is the only thing they have control over. They can control what they eat. They can control how much. And, they can control what they do after they eat.

I think control is also one of the reasons that my son is restrictive with his eating. While there are many textures of foods that he avoids and is unsure about trying, it's also become about control. Because there are times that he may feel out of control, knowing that he can choose what he eats, when he eats, and knowing that he doesn't have to eat certain things, gives him control.

I think we're all searching for a way to be in control. Ultimately, though, we must realize that we are part of a big picture, a big plan, that started a long time ago, long before we were even born. That started with the beginning of time. And, God knew. He knows the whole plan, he sees the whole picture, even when we can only see the pieces. In Jeremiah it says,

"For I know the plans I have for you,” says the LORD. 

“They are plans for good and not for disaster, to give you a future and a hope." 

(Jeremiah 29:11 NLT)

And that is what I need to focus on above anything else, that I am part of a bigger picture. Part of a bigger plan. I do play role in it. And, I need to know that anything I do is a part of that plan. I may not find out how I fit in the plan today or tomorrow. I may even leave this world and never know what role I played. But, I know that I want to contribute to it. That's one of reasons I'm writing. That's one of the reasons that I'm trying to be a different person. To be someone who is a part of the plan, not someone who lets the plan pass me by.

I shared this verse on Facebook other day...

We can make our plans, but the LORD determines our steps. (Proverbs 16:9 NLT)

To me, this verse is about having a plan, without the knowledge of how I'm going to complete it. I need to rehearse this one everyday. Not knowing about the steps I'm going to take, but knowing that there is a route and a plan. And, trying to follow it the best I can, which means praying and seeking answers and guidance. I feel that many of the things that have come to me lately have been as a result of being more connected to God. So, I need to keep striving for that. I need to remember that it's not about me, it's not even about you, but about being a part of the big picture.

On the Right Track

"Well, well, anyway, blue is the only color for a really useful engine. 

Everyone knows that!" - Thomas the Tank Engine

O loves trains! Actually, O is obsessed with trains. It wasn't until he began attending preschool that he started to explore the fact that toys other than trains exist and might actually be enjoyable to play with. Even so, more often than not, the trains win.


He is particularly fond of Thomas the Tank Engine, as so many boys his age are. However, he also has a detailed knowledge of how steam engines work. He knows things about pistons, fire boxes and drive rods. He also has an unlimited knowledge of freight cars and coaches, mail cars and diesels. While I am proud of all the train knowledge O has acquired, I do recognize that this is not typical of many 4 year olds.

Trains are also O's comfort item. He uses them to de-stress, much like I use a hot bubble bath, a good book or now, this blog. He could, and has, spent hours organizing and creating stories with his trains. He likes to be alone with them, to get lost in his imagination, where he is in control. This comfort and control, along with his knowledge and obsession, does not make sharing or socializing with his trains very easy.

Several weeks ago, we had another family over for dinner. They have two boys around O's age. This took a tremendous amount of courage on my part, not knowing how O would handle having other boys his age at the house, playing with his toys. When prepping him for the evening, we discussed that the boys would be coming and that he would have to share his toys. I wish I could accurately describe the look on O's face...it was pure anxiety. Not because he doesn't enjoy the boys or that he hadn't played with them before, but because he would have to share his toys, more specifically his trains. I know that all 4 year olds struggle with sharing, but I would argue, for a different reason.

My son is truly afraid that someone will use his trains incorrectly. Even adults are typically not allowed to touch the trains, but rather watch as O explains the story the trains are telling that day.

So, back to the prepping...we talked about what toys we would share and what special toys we would put away. I must admit, I struggle with this. How will he learn to share if we don't require it? But, in our journey, we take baby steps. Sharing the dinosaurs and toy cars was hard enough, but the trains would have been too much...at least for now.

The evening went well, sharing and all. It wasn't until the end of the evening when the boys were helping clean up that O had a minor meltdown - after all, they weren't putting the toys away correctly! Again, the word obsessive comes to mind. Like I said before, it's a journey. But, I think we're on the right track!

Happy Birthday O! I love you!!

The Golden Egg

It's the most sought after prize in the Easter Egg Hunt, at least in my family. It's the Golden Egg. It only contains five dollars, but compared to the other eggs, which only contain less than fifty cents a piece or some kind of candy, it's the one to find. And, it's always the one that is hidden in the best, most obscure place.

At our egg hunt this year, O found the Golden Egg. He didn't seem to recognize the importance of finding this egg. Although he did notice that it was bigger than the other eggs he had already collected, he wasn't all that impressed. In fact, when he shook the egg next to his ear, he was disappointed that he heard no sound. 

"Mom, there's no sound," he said to me, as if I could give him some explanation as to why his big egg was broken.  I told him, "It's okay, there's something inside." Obviously it wasn't okay to him, as within the next minute he had traded the coveted Golden Egg to his sister for one of her eggs, that actually made noise when he shook it.

Although I hate to admit it, I have probably done the same thing. How many times have I traded away a "Golden Egg" because it didn't make enough noise? How many times have I been dissatisfied with something and not bothered to take that extra look, the one that would have told me what a treasure I already had?

Maybe we do this with church, or even with God, Himself. We give our "God egg" a little shake, and if it doesn't sound the way we think it should, we trade God in for something else, something that gives us immediate feedback or gratification. Do we also do this with our relationships with others? If something needs investigating, if we need to actually open the egg in order to determine it's true value, do we do it? Do we take the time? Or, do we base our relationship or impression on that initial shake.

Here are some lessons I learned from the Golden Egg:

• I need to take time, to invest in others in order to realize their true value.
• I need  to trust that the egg I've been given is truly my treasure and stop looking for other eggs that only provide temporary satisfaction.
• I need to appreciate and see value in what has been gifted to me by God.
• I need to to see value in my relationship with God and stop expecting Him to "make the sound" I want to hear.

Although I don't always need to be searching for a "Golden Egg" or the highest prize, when I find it or it has been gifted to me, I need to see its value. If not, I may lose out on one of life's greatest treasures.

From Pieces to Peaceful

Do you ever feel like you're in pieces? Like the whole picture is not clear? Do you struggle to understand  how the people, circumstances, and emotions of life fit together?

If so, you are a lot like me. I  go through each day with a desire to fit the pieces together, to make peace with all the pieces of my life. Although this is a daunting task, it would be a lot easier if I understood what that word "peace" really means!

My 9 year old loves peace signs. She has them hanging all over her room, has them on her t-shirts and earrings, and spends time doodling them in her notebook. When I researched the history of this symbol, I found that it originated in 1958 by the Campaign of Nuclear Disarmament. I'm pretty sure my 9 year old doesn't know anything about nuclear disarmament. (Even I don't know anything about it!) She just thinks peace signs are cool.

Other symbols of peace include a dove and olive branch and the v-shaped hand signal. Although these are widely known symbols of peace,  are they really helpful in explaining what peace means? There are also various sayings that have recently become more popular that have to do with peace. I've seen countless t-shirts with the saying, "Peace, love, (fill in the blank)". And, although originally produced by the British government as a propaganda poster in 1939, variations of this are now all over Pinterest:

Still confused about peace? I was too. So, I decided to look up some synonyms for the word "peace". Here are some of my favorites:  calm, ease of mind, reassurance, imperturbability, stillness, unconcern. Need more clarification? Sometimes knowing the opposite of what you want to achieve helps make a goal clearer. So, here are some of my favorite antonyms for peace:  uneasiness, restlessness, anxiety, apprehension, fearful expectation.

After all this research, I determined that peace is difficult to achieve. It's a lot easier to be filled to anxiety or uneasiness than it is to be filled with peace. Then I realized, peace is only difficult because I frequently attempt to gain it on my own. Doesn't it make more sense to go to the one who is called the "Prince of Peace" to ask for help? Jesus said in John 14:27

"Peace I leave with you; my peace I give you. I do not give to you as the world gives. 

Do not let your hearts be troubled and do not be afraid." (NIV) 

I read once that this "peace" does not mean an absence of conflict or trial, but rather the ability to "keep it together" during those times. That is what I desire, the ability to exhibit calmness and confidence during times of trouble, whether big or small. And, that kind of peace has been given to me. All I have to do is accept it. 

My favorite synonym for peace is imperturbability. Lord, help me to be imperturbable today...

The Family Behind the Blog

“What can you do to promote world peace? Go home and love your family.”

- Mother Teresa

My family is one of the main reasons I wanted to start this blog. I hoped that by writing I would find a way to escape, and, with that opportunity for escape, would hopefully be more prepared to take on the daily challenges of raising a family. Since I know that I will be writing a lot about my family, I thought it would be fitting to give you a glimpse into their identities, as I perceive them, of course.

A is 9. She is a confident, over-achiever who has so many interests that she has trouble deciding what she should do. So much so, that, when she was in first grade, her teacher told us, during the fall parent conference, that all she wanted was for A to stop taking things so seriously - she was 6! She is brainy and athletic and, much to our horror, is entering tween-hood. She loves singing, dancing and drama. This girl lives for the performance, whether on stage or off. I love A!

E is 7. She is in the middle. I see her constantly struggling between following and leading, traditional and unconventional, and dependence and independence. She is talented in music, but would rather compose her own songs than learn the notes. See what I mean? She is extremely sensitive and loves deeper than anyone else I know. She is a model student and her teachers adore her. I love E!

O is almost 4, but he is still the "baby." The only boy. From the very beginning I knew he was different. There was just something about him that made me crazy with worry . . . maybe it was the fact that he hardly slept, unless cradled in my arms, which I tried very hard not to do. Since, he had to be "trained to sleep on his own," right? It had worked with the girls, so why not with him? Probably because every time I laid him down, no matter how gently, he would wake with terror, his whole body reacting to the release. From diaper changing to bathing, speaking to eating, everything was different. Boys are different than girls, right? But my instinct told me it was more. By 18 months he was in speech therapy, was receiving early intervention through our local Regional Center and he began occupational therapy around the age of 2. Although, now, in many ways, he is like any other preschooler - he loves to learn, make us laugh and ride his tricycle - he also experiences this world different than most. I anticipate most of my writing will be about O. About his journey, and ours, as his parents. About his experiences, and how we struggle to make life easier for him. I love O!

I also have a truly amazing husband, who is extremely supportive of me. I do have to say, though, that the first time I mentioned to him that I wanted to write a blog, he looked at me like I was speaking a foreign language. But, once I translated my crazy idea into a vision, he could not have been better at pushing me toward my goal. He even offered to push the "publish" button on my first post when I couldn't bring myself to do it. (Incidentally, I did end up pushing the button myself...it just felt like it was mine to do, but I really appreciated the offer). Most days I don't know how he puts up with all my insecurities and obsessiveness. But, everyday, I am grateful that he does. I love M!

So, there you go . . . that's my family and I love them!

The Birth of this Blog

This blog was born out of a time of prayer and fasting. Now, don't get nervous, thinking that I'm some super-spiritual being who has it all together. Let me explain...

Several weeks ago I was challenged, along with others in my church congregation, to enter a time of prayer and fasting during Lent. As is typical  with me and challenges, I first decided that it would be too difficult and, since I would likely fail, I didn't even want to try. However, it became obvious to me, as my thoughts frequently returned to this challenge, that it was something I had to do. So, I did it. I picked a meal each week to fast and pray. And, after hours in prayer, reflection and stillness before God during that time, I believe I was given these three tasks:

1. Do More - To me, a professional, busy mom of three who works outside the home and volunteers weekly at church, those two simple words sounded daunting. Maybe any woman or person who feels like they are already spread too thin would feel the same. How could I possibly do more? How do I fit that in? I still don't know exactly what to do or how to do it,  but the words were clear:  Do more.
2. Set Goals - This has always been a difficult thing for me to do. Difficult, not because I don't have things I want to accomplish or areas in which I want to grow. But, difficult because of the fear of failure. What if I set a goal and can't reach it? What would that say about me? Well, I have been pushed to a place where goals aren't just recommended, they are necessary. It's time for me to set goals, whether I reach them or not! I still don't know exactly what or how, but the words were clear:  Set goals. 
3. Use Your Creativity - I was much more comfortable hearing these words, since I've always enjoyed creative tasks. When I was a teenager, I wanted to be a writer. I often used my own dreams and circumstances to construct stories. Over the years, I've dabbled in graphic design, scrap booking, decorating and many other things creative.  As I reflected on my recent lack of motivation and interest in anything outside of the routine of life, I realized that I had let my creative side lie dormant. I had forgotten how to create. How could I re-build that part of me? When would I find the time? I still don't know exactly what creative tasks lay before me or how I will get them done, but the words were clear: Use your creativity. 

Although the season of Lent has come to an end, this blog is the beginning of a new season for me. I have not started this blog in anticipation of becoming a famous blogger or even with the idea that I will have dozens of people "following me". I write with an anticipation of exploring my creativity and releasing all of those ideas and thoughts that swim wildly around in my head everyday. I write because it's a goal and I suspect it will enable me to do more. I write for me, and for you, if you choose to follow me in this journey!