Reacclimating

I am trying to re-acclimate myself with my blog.

When I started this blog, I was in a place of crisis. One of my coping mechanism was to write.  As I wrote, I started to put some of my thoughts down in this blog.  As I moved out of the initial crisis of having two children identified with autism in less than a year and what that meant for our family, I moved on from writing as much. I continued to journal my thoughts, but not here. My energy moved to maintaining our life, working and carrying out therapies.

We are now entering a new path on our journey. Our almost 15 month old, third-born son is scheduled to be evaluated by a neuropsychologist at the end of this month. She will be administering the ADOS on my baby in just over a week. I am terrified. I can feel myself moving towards that place of crisis again.

I really can’t put into words how I am feeling right now. I am on autopilot and I have a wall up. I think I am not letting myself feel until I can make it through this appointment. The stuff he is doing, well it is one red flag after another and it is scary. I am trying to make myself feel something, anything and it just isn’t coming.  So instead of feeling, I am just doing. I can feel later.

As a coping mechanism, I find myself writing more. So I am here, to write and to cope and to re-acclimate myself with this place that was such great solace to me not that long ago.

Tears in my Chicken Soup

I cried last night.  I cried hard.  I cried like I have not cried in a long time.

I cried over a bowl of chicken soup.

My two picky little eaters have taken a liking to a certain brand of canned chicken noodle soup.  Although I am able to buy it in bulk, the spot on the shelf for the soup empties weekly.  In an attempt to save some money and offer a slightly healthier alternative, I decided to buy a few rotisserie chickens, carrots, celery, onions, rotini noodles and chicken broth.  My dad (because my time is very limited lately) graciously offered to make us a bunch of soup and portion it out so we could freeze it and easily serve it for lunches to the boys.

The soup arrived last night, and I excitedly warmed up a bowl for the boys to try.

It was a huge failure.

B took one bite and refused to eat anymore because, “the broth tastes different and the chicken is kind of….oodily.”  The soup was not exactly the same and therefore, he did not want it.  I got down on his level and acknowledged his feelings.  I let him know that I understand that he likes things to be the same and when they are not that makes him uneasy.  We talked about that we might not always get what we expect, but that we will be OK.  I asked him if he thought the soup being different was a big deal or a small deal, a technique we are implementing in day treatment and at home. He responded, with tears in his eyes, “It is a big deal.”  I gave him a questioning look and the tears started rolling and he said, “I know you say it is a small deal, but it is a big deal to me.  I makes me feel like I have lots of energy because it isn’t the same.”

I couldn’t respond in that moment.  I was so proud of him for being able to acknowledge those feelings, but so sad that he was having such big feelings about something so small.  I gave in to him and popped a bowl of oatmeal in the microwave and moved on to feeding A the soup.

He got a big smile on his face, pounded his little fists on the table and yelled, “Soup, soup, yummy!” He took one bite and quickly cringed and spit it out.  Second bite, same result.  He tried one more time, and started whining and saying, “Icky, soup icky.” For him it was the fact that the chicken was shredded up and sticking to the carrots and noodles.  His oral defensiveness does not allow for multi-textured foods to pass his little lips.

He became mad and I became even more sad.  Why does something as small as a bowl of soup have to be such a big deal?  Why do I have to see these little guys constantly becoming anxious and upset? Why does it have to be so hard, all the time?

After everyone was asleep for the night I sat down and my mind began replaying these questions over and over.  My heart was heavy and the tears started.  Slowly at first, but as the questions kept replaying in my mind and I pictured the anxious looks on my boys faces when the soup hit their lips, the tears turned to sobs.  My whole body shook and my tears stained my cheeks.

Once the tears subsided, I felt a little better.  I stopped and reassessed the situation and marveled that B was able to articulate so well why he didn’t want the soup and that A was pairing words together.  I decided that just because they didn’t eat the soup, didn’t make it a failure.  They still showcased some other really great skills that we have been working so hard to achieve. They did well.

I am becoming more at ease with this stuff most of the time, but every once in a while, it will hit me like a ton of bricks.  And boy do those bricks hurt.  I do wonder if that will ever go away, or if there will still be tears in my chicken soup twenty years from now.

Climb Up and Walk On

During the months leading up to and following A’s diagnosis in December, I hit a very low spot in my life. It has been coming on for quite some time now, but this was a breaking point for me.  I slipped into a dark place.

I am trying to climb up and walk on.

At the end of December, I started seeing a therapist for me.  Did you hear that? That is right, I said m-e, ME.

She is a wondering, caring, insightful woman who has special needs children of her own.  She is helping me to climb up out of the dark place I slipped into.  It is not a quick process, nor an easy process.  I am being helped along by a good new friend of mine, Zoloft.

During the past year, and especially the past six months or so, there are many areas of my life that have really taken a beating.  My home, my marriage, my job, friendships.  I could continue, but I won’t.  The important thing is I am working on building those things back up.  I am climbing up and walking on.

One of the things I am working on with my therapist is working on these things for me.  Her theory with me is that I am so busy taking care of everyone else that I have totally forgotten about me.  Not an uncommon thing to have happen to a mom of two young children.  Probably even less uncommon for a mom of two young, special needs children.

That being said, there is not reason to neglect me.  My husband, my children, my family, my friends and my coworkers all need me to take care of me.

There was a time in my life when I worked hard to find ways to get my husbands head to turn.  More recently, I quickly find my ugliest pair of sweatpants in hopes that at the end of the day he won’t want anything to do with me and I can just be left alone.  In the past I prided myself on always being responsive to my friends and family.  Now emails and phones calls often times go unanswered.  My job used to be a very important part of me.  I was always proud of my work because I worked hard to make a good product.  Lately, I find myself doing the bare minimum and spending a good part of the day just staring at my computer screen not knowing what to do.

I need to shine again.  I need to be a good wife, a caring friend and a successful worker.  Not because it is the right thing to do.  Not because someone told me I need to.  I need to do it because it is part of what makes me the person I am.  It is what makes me happy.

Going forward I am still going to be an awesome mom and a huge advocate for my children.  I will do anything to make their lives a little bit easier.  However, I am going to keep reminding myself to be me, to make myself happy too.

I am climbing up and walking on.

 

Another Little Boy, Another Big Diagnosis

On one hand, I cannot believe I am about to write this post.  On the other hand, I knew it was just a matter of time.

We had a medical evaluation for A yesterday.  I am numb with pain.  I am gripped by fear.  I am angry at God.

I am a mom to two boys with an Autism Spectrum Disorder.

Alex is only 20 months old.  Due to his age,  the evaluation team decided to use what is called the DC: 0-3, for children birth to three years old, instead of the DSM-IV criteria for ASD diagnosis.   Alex was diagnosed with Multi-System Developmental Disorder (MSDD).

MSDD is considered a “crosswalk” diagnosis to Autism and PDD-NOS. Had he been a little older, the psychologist said she would have diagnosed him with PDD-NOS.  We have to have him reevaluated in one year at which time they will determine how he will qualify under the DSM for an ASD diagnosis.  As A matures and we are better able to understand him, his diagnosis will be changed to either PDD-NOS or Asperger Syndrome.

I am happy to have some answers, but heartbroken to know his life is not easy and won’t ever be easy. I knew that, but it is just so definite now. It is a lot to take in.  It is just so unfair.

In Their Eyes

Whenever I hear someone say, “the only kids I like are my own” it makes me cringe.  You see, I have one (or two) of those kids that sometimes melts down in the middle of Target, has an insatiable need to touch everything and everyone in sight, is powered by the sun apparently, because they never run out of energy, will talk your ear off… You get the picture, I am pretty sure my kids are the type that make people make this statement.  In their eyes, my kids are not likable.

In my eyes, my children are perfect.  I have been working hard to gain a more realistic view of my children compared to their peers.  I have only ever known how to be a parent to my children, my adorable, sweet, high maintenance children.  I have grown so accustomed to working with, or sometimes around, their difficulties, that I lost sight of what typical development looks like in a child.  Through the process of having my boys evaluated, I thought I was gaining perspective on this.

As a part of the medical evaluation that we are having done for B next week, we needed to have some paperwork completed by his teacher.  She quickly got it done, and sent in back home in B’s backpack, sealed in an envelope.  Since I have become quite anal about organizing the mountains of paperwork, I make a copy of everything that we fill out to keep in my file as a reference. Yesterday, I brought that envelope to work with me so I could make a copy.  Bad idea.  Bad, bad idea.

Seeing your child in another person’s eyes can be quite painful.  Especially when you have an impulsive, high energy child that does not understand socialization, but yearns to make friends, doesn’t quite understand how to control their body and becomes grossly overwhelmed when their senses are stimulated.

I, apparently, still do not understand the extent of differences between B and his typically developing peers.  Almost every question on the form was answered on the extreme ends on the rating scale.  The questions that particularly started my heart on fire were: is disliked by other children, answered pretty much and makes friends, answered not at all.  The knots are twisting in my stomach and tears welling in my eyes again as I write this.

Not only did I have to see B in her eyes, but I caught a glimpse of B in his peers eyes.  It hurts my heart.

Hurting or not, I am trying to take the positives out of this situation.  A few things I have come up with:

  • When asked if B teases other children or calls him names, she answered not at all.
  • His teacher wrote that his strengths are being highly intelligent and articulate.
  • B’s teacher is very interested in learning new ways to help him in the classroom.  She asked to receive practical applications for behavior and sensory strategies for the school setting.
  • I have learned to fill out evaluations based on the worst day.  I assume his teacher uses this same practice, which is for his benefit.
  • Most importantly, B loves preschool.  He does not notice the differences, or dislike by his peers, yet. We are being handed the opportunity to help him before he starts noticing.

Today is a new day.  I am re-framing my thoughts.  My heart may still be smoldering from the fire yesterday, but the flames have gone out.  Today, I am thankful for his teacher’s honest opinion. For without her eyes, B may not get the things he needs to grow into the beautiful, compassionate young man I know he can be.

Thinking and Crying

I spent my evening last night beginning the long, emotionally draining process of filling out the Infant/Toddler Sensory Profile and the Bayley Social-Emotional and Adaptive Behavior Questionnaire.   Those 300+ questions have the ability to make a grown man, or woman in this case, cry.

I was doing just fine as I was filling out the Sensory Profile while B and A happily played away in the basement.   I was able to go through and quickly answer many of the questions and then went back through and thought intently about the rest and made some comments at the end of each section.   I started working through the Bayley Questionnaire, but then had to stop to go put A to sleep.

This is when things got hairy.  My husband and B left to go to Target to pick up a few things and I was alone in the quiet of our house rocking and nursing my baby to sleep.  The familiar tune of twinkle-twinkle was playing on the sound machine, the room had a warm glow as the sun set, A was softly stroking my skin as his sweet little body drifted into slumber and I started crying. The crocodile tears were a flowing.

I sat in A’s room rocking and crying and thinking for a long time after he fell asleep.  As I studied his perfect little silhouette, I was thinking and crying about many things.

What did I do wrong?

What can I do to just make this go away?

What did they do to deserve a more difficult life?

I know the answers to these questions: nothing, nothing, and some more nothing, but I still think them and cry over them.  I think and I cry because I feel so helpless, yet at the same time so overwhelmed and overworked in all of this.

By going through this process, I know in my heart that I am doing the best thing by having A evaluated.  He is so much like B was at this age; I know what I am seeing.   But then the mother’s guilt sets in and I think I may be selling him short by focusing on all these signs.  And then I cry.

I think and I cry.  I cry and I think.  I can’t stop thinking.  I can’t stop crying.

I know we haven’t been officially riding this roller coaster for long, but when does it get easier? Does it ever get easier?  Will I ever stop thinking? Will I ever stop crying?

EI

I had my first experience with Early Intervention today.  It was good… I guess.  I thought it would be easier to go through this process the second time around, but it is just as difficult.  My heart hurts hearing that the professionals can see in a short, 90 minute visit where my concerns are coming from.

I hurt.  This hurts.  I am trying to be strong and I know that I am, but this is hard. This is painful.

This morning, the county EI worker (who will be our case manager) and a school district representative came out to our house. They interviewed us and went through the initial paperwork.  They also observed A and tried to get him to engage in some age appropriate behaviors.  He did not play appropriately, but they were, as I knew they would be, impressed with his language skills.

A is not feeling well today so they were also able to see his difficulties with coping mechanisms and also some of the stimming behavior that he engages in (head shaking, spinning lids).  They agreed that he seems to have a lot of sensory processing issues, and has many red flags for autism.

My case manager was very up front and before we began she explained that they would score him, but if we felt strongly about taking the next steps with them, we would. We agreed to that and they will call to set it up in about 2-3 weeks.

He scored a 42 today and the cutoff for doing the next step is a 40. They said that even if we did not push to do the next evaluation they would have encouraged us to, based on the behaviors they did see that decreased his score.

One of our more immediate concerns is with A’s eating.  He is very sensitive to texture of food and does not have a very large palette.  He is consistently below the 10% mark for his weight, even though his is just as consistently above the 85% for his height.  Due to my concern, my case manager is also going to put me in touch with a public health nurse to see if they can help me out with his eating. They said the PHN would have good suggestions for us and could help us to monitor his food intake, weight, etc. more closely.

The nice thing, I am finding, about the birth to three program is that the child does not need to qualify under as broad of an umbrella to get services. I am fairly certain that will not matter in our case, but it is nice to know.

During our next evaluation, we will work with a school psychologist, an OT, an ECSE teacher and the case manager. All of the evaluations and therapies will be done in our home. That is such a relief as we will be able to do it when B is at school and not have to upset his routine or day any by having extra people in our home.

I just didn’t think this would be as tough the second time around. I initiated this process.  I am the one making the observations.  I know what I am seeing.  This should not come as a surprise to me.  Our case manager and school district representative are agreeing with me, not pointing out new revelations.

It still hurts though.  My heart is aching and the tears are flowing.  I know they will both be fine and do great in life.  I know that I am providing them the opportunities they need for success.   I just wish it didn’t have to be so difficult for them to get there.

Today I am letting myself hurt.  I am letting myself cry.  Tomorrow though, tomorrow is another day and I am going to try my best to get up and keep fighting.  Fighting to take as much of the pain and frustration that will come to them from this diagnosis away. Fighting to make their world as easy as it can possibly be.

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