An Eye-Opener

I have to be brutally honest about something.

Yesterday, Colt and I were out running errands and we had just parked at Academy when a truck pulled in and parked in the handicapped spot beside us. I was trying to finish my coffee before entering the store, so I was just sitting. I glanced over, noticed it was a young couple, maybe late 20s or early 30s.  I watched them get out (the woman closest to me) and thought to myself 'Boy, they sure don't look handicapped to me' and carried on finishing my Starbucks and trying to talk Colt into finishing his milk. The longer I sat there, the more they annoyed me because well, I didn't have anything better to think about, I guess.

Finally, Colt and I got out of the car, distractedly passed by the back of the truck, and went inside. We got what we needed and came back out. This time, we walked in front of the truck. This time, I noticed a tag on the front of the truck stating something about the US Army. As I walked between my car and this truck, I noticed a knob on the steering wheel and an extra "gear shifter". At that moment, I started to get it. I put Colt in his car seat and backed out. I went behind the truck and actually looked this time. He had a tag with some kind of award hanging between the numbers. It honestly looked like a Purple Heart, but it was covered by a plate around the edges saying "United States Army" so I couldn't be sure.

This was the day after Veteran's Day. Suddenly, I was so ashamed of myself.

How could I be so judgmental?  I wish now that I had parked the car again and waited on the couple to come out so I could thank that man for his service and his sacrifice.  I wish I could thank him for being able to sit in my nice warm car, drinking overpriced coffee, without worrying about being blown to smithereens.

So, to that man, his wife, and every other Veteran - Thank you. Thank you for fighting for me, for my son, for my family, for our freedom, and our safety.

Thank you, God, for allowing us to be born into the Land of the Free, BECAUSE OF THE BRAVE.

A Big Win!

Well after a re-evaluation and two meetings with a bunch of school-system people,  it has been decided that Colt is "Significantly Developmentally Delayed" (or SDD). This will qualify him for physical therapy and occupational therapy, along with the speech therapy he is already receving, through our school system. I am very happy. Don't get me wrong, I am not happy that he needs it, but I am happy that he is going to receive the help he needs. The first time I was told he wasn't "bad enough" according to the "system" but everyone who evaluated him agreed that the system is flawed. The county school psychologist went to work on Colt's case and figured out a way to get him the services he needs, in a way that had never been used before. I appreciate her hard work and the rest of the therapists and teachers/administrators that helped us. I am hopeful we can catch Colt up in gross and fine motor skills before he starts Kindergarten with their help. Yay! It means three different therapies a week, but that is a win in our book.

Real talk.

Nothing major has really changed since my last blog post, but I have found myself in an ugly, discouraged state. I am struggling. Part of it is Colt - he is an incredible gift but he is exhausting and difficult at times. Part of it is just me.

What I am struggling with most is just being a mom. It's hard. Especially when something is wrong or different about your little one and there's just nothing you can do to help. It's been mentioned to us by a few different people (teachers, the school psychologist, physical therapists) that he appears to be ADHD. I have no doubt about this, but he's also 3 years old. (4 next week) I do see it, though. Every day I see it. At nap time and bed time these days especially. He just absolutely cannot shut his brain down. It's exhausting. Have I mentioned that? Someone else (not just a regular Joe, this person is legit) mentioned they believed he had Asperger's. We've looked into this, but I don't think it's the case. There are some definite similarities, but some of the others, I think absolutely not. It's frustrating to hear this stuff and know that there is definitely still something going on (especially when you see him with his peers) but no one can seem to put their finger on it. He is "just Colt".

He is crazy smart. CRAZY smart. He can sight-read words that no one has ever sat down and "taught" him. He just remembers them - from books, street signs, commercials, and store signs. He can tell you directions to places because every time we turn, he wants to know the name of the road. This week in the car, he has been making me spell words. While on the phone with my mom, she asked me what we were getting him for his birthday and I spelled, "B-I-K-E" and Colt said, "A bike?!?" Dude. He shouldn't know that, right? When he wants you to talk, he'll ask you to talk about weird stuff that kids shouldn't find interesting, for example yesterday at lunch he said, "Tell me how we got to Myrtle Beach." So I said, "Well, we started on 75 south to Atlanta" and he said "Then we got on I-20 east to get to South Carolina!" Um, yes we did. Last month.

With all that being said,  he still isn't even close to being potty-trained. I am beating myself up over it. I feel like I have done something wrong and missed our chance. He will go when you take him, but can't seem to stop what he is doing and go himself. We put him in undies because people say he won't like being wet. It doesn't phase him in the least and I wash a lot of clothes and couch cushions. I spent a ton of money on rewards for a reward box and sticker chart and he doesn't care. I downloaded a "potty app" but he would still go between our set times. I am absolutely at a loss. Colt is awfully big for his age (he wears size 6 clothes) and I can FEEL people judging me when his shirt comes up and they see he is wearing a Pull-Up. What do I do? :(

Maybe this has nothing to do with me, but it feels like a mommy failure. I just try to remind myself that he is truly his own person and doing his best.

I never imagined this amazing, talkative little boy would be the same boy that didn't speak until well after his third birthday. As we were leaving his speech therapy yesterday, I overheard the school principal telling someone, "That little boy is a miracle." and it brought big fat tears to my eyes. He is just that. A beautiful, brilliant, miracle baby. Those moments, those proud, long sought after moments are what help to slowly but surely drag me out of this ugly hole I get sucked into so easily. 

Bad News.

Today we had our usual 6 month visit to the pediatric eye specialist. I had a couple of concerns going in and left with more coming out. Not what I was hoping for, I have to say.

Lately Colt hasn't wanted to wear his glasses in the evenings,  saying his "eyes are tired". We have also noticed one eye starting to turn in a bit. If you remember,  Colt has had three surgeries to correct this already.

Well, Dr. Peterson noticed it immediately. It really is turning in. Also, the vision in that eye has gone from 20/40 to 20/70 in the last 6 months. He is concerned about the crossing mainly because when there is one "good eye" and one that crosses, the brain will stop using the "bad eye". This is what leads to the vision loss and this can be permanent.  Now Colt's glasses are not strong enough,  but Dr. Peterson wants to wait to change the prescription.

So. Now, we are supposed to patch the good eye for two hours a day, which will force his brain to use the bad eye. We have been through this before but only for one hour at a time. If the patch helps,  great! If it doesn't, we are looking at a fourth surgery. We have to go back in two months, rather than our usual six. This is not what I wanted to hear and really breaks my heart. I really thought that door was shut for good.

Three Year Old Responsibilities

Things at the House of Doo have been kind of hectic lately. Summer is winding down but it is still miserably hot out, so the family ice business is crazy. There are also about to be some changes, so Ryan works a lot. Colt and I spend A LOT of time together when Ryan is working. That is a good thing, however, some days I LONG for Colt to go to bed. Don't act like you don't know what I mean.

Anyway. Colt seems to go through cycles of really great behavior, followed by really terrible behavior. It seems the latter stage has been lasting a few months, but I was starting to notice it was worse after eating certain foods. Especially fruit snacks. He was a monster every time he ate them! About a year ago, I took foods away that contained dyes. It helped tremendously. Then i got lazy and let him have them back. Well, I have taken them away again. It seems to be working, or maybe it is a coincidence. Either way, I am happy.

Colt is also VERY strong-willed. I have been reading articles and blogs about parenting strong-willed children and have found them very helpful. One thing that really seems to work with Colt is to let him have responsibility. We have been to the mall twice this week and both times,  I let him walk. I LET MY VERY DEFIANT THREE YEAR OLD WALK THROUGH THE MALL. WITH NO LEASH/STROLLER/BACK-UP PLAN. ALONE. (Me, not him) If you are a parent of a very defiant, stubborn, clever three year old you know what kind of disaster could have ensued.

Guess what. It worked like a dream. Now please know I threatened the devil out of him, but it worked. I let him know what a privilege it was to be allowed to walk and not ride in a stroller but if he even thought of running away or grabbing anything,  his little hiney would ride in a stroller forever. It worked. It worked. It worked. We went in stores, we walked long hallways,  we went in a "cafeteria style" restaurant and he pushed his tray down the line and chose his food. He even went in the bookstore, chose 2 books, and patiently let me pick one! I am so proud.

Tomorrow is a new day and things may change,  but for now, I am thrilled. I love allowing him some freedom and responsibility and he loved it too.

Now, if we could only get him potty-trained

Reaching Out.

Following our geneticist's recommendation, I am now trying to get physical therapy through the school system for Colt.  Here is my latest email (minus names) to the county Special Education Services:

Ms. I.,

I have a little boy (Colt D., 3 1/2) that receives speech therapy through Cherokee Ridge. He was tested by T. C.  in October 2013, after aging out of Babies Can't Wait. We were assured he would qualify for Special Ed Pre-K because of his delays, but indeed, he did not. I was told his cognitive ability was too high. I realize that is a good thing, but it left us with a lot of problems and no solutions, also nowhere to go. We ended up at Siskin Children's Institute and love it, however, because we live in Georgia he cannot receive therapy through them. I mentioned we get speech and I am thankful for that, but he was receiving PT through BCW and wasn't approved for it through the school system. I was very unhappy with this testing and I feel that because he DOESN'T have a diagnosis, he is allowed to let "fall through the cracks." Luckily, we see some amazing doctors that are trying to give us direction, but none can seem to figure out why our school system isn't helping us more. We recently saw Dr. Stevens, our geneticist, and she strongly recommends Colt receive PT again. Can you please help me? What can I do? 

I was referred to you by C. H., a dear friend and W. County teacher. She has a son that has some similar issues to my son now and she has been a wonderful resource and sounding board. 

Thank you in advance for any help or direction you can give. I refuse to let my precious boy fall through the cracks. He doesn't deserve that.

JBD

 So, here's hoping we can get a little help and hopefully add PT back in to our life.  Wish me luck!

One Year Genetics Follow-Up

Today was our follow-up with Colt's geneticist,  Dr. Cathy Stevens. If you have been following Colt's journey for the last couple of years,  you will know he has been through lots of testing to try to find the root of all of his developmental delays. We had two rounds of genetic testing done with no answers and decided to stop for a year and see what happened. Colt was having nightmares and it was getting harder and harder to watch him scream and fight while they put him to sleep or poked him with needles.

So, it's been a year and here we are, a whole year of unbelievable progress from our precious boy. We have so many people to thank for that - therapists, praying friends, fantastic teachers, and a very supportive family. Dr. Stevens was VERY pleased with Colt's journey. She couldn't believe how much he can say, when only months ago, he communicated with signs and very, very few words. She says he is still terribly large with a large head, but now thinks the head size may be genetic. Thanks,  Ryan. ;)

She is still a bit concerned with his low muscle tone. She thinks we should get back in with a physical therapist and is writing us a recommendation. She thinks that should also help with jumping, climbing steps, etc. The speech therapy should continue for enunciation/clarity purposes.

She also would LIKE another MRI to check his brain damage and see if it has changed at all. However,  we are going to wait. It really won't change anything for him right now,  so maybe if he is still behind his peers before starting Pre-K, we will have another one.

So, there we are!  Continue therapy and wait it out. Now though,  I have no idea how to go about getting PT started again without the help of Babies Can't Wait.

I am very happy with the visit and thrilled to know she doesn't think we need to pursue any more testing for now. Our hard work and awesome support system is paying off.  I can see that in Colt every day.