Celebrating

Today we celebrated the kids’ birthdays. We held the celebration at a nearby park. I was hoping that this would be beneficial for Gage. I’m not sure I fully thought that out. After several days of “cold” weather, I think everyone was at the park…ok not really. However, there were several parties going on at the same time as ours. This turned out to be very interesting. Gage had no problem going into all the pavilions and helping himself to what they had.  He ran up to virtually everyone at the park and interacted with them on some level. For his dad and me, we cheer this. Luckily, there were understanding people at the park. To everyone at Royal Palm Beach Commons Park today between the hours of 1-4 pm, I thank you from the bottom of my heart. There is always so much anxiety that I have going out because I never know how Gage is going to react to situations.  I mean I can try to anticipate and control for as much as I can but I am not always able to do that 100% of the time. So, to all those people sitting on the grass as Gage came running onto your blankets – Thank you. He loves to run and be chased. Unfortunately, he doesn’t always understand when to stop. To the couple with the bicycle who allowed Gage to play numerous times with the bike never becoming frustrated with him – I thank you. To the party that was going on in Pavilion 19 – thank you for allowing him to “crash” your party. I cannot begin to explain how thankful I was for all the understanding.

Gage has been doing amazingly well. The words that he is using every day have multiplied. I can’t even begin to remember all the words. Some I didn’t even realize he knew. While this helps with us being able to communicate with him, he still has his moments where we have no idea what he is trying to tell us. He has also started to be more social. He will tell me “hold hand mommy”. This generally means he wants to show me something. Just hearing my sweet boy say “mommy” will never get old. I waited almost 3 years to hear that word. I had said I wouldn’t complain when he started talking and I won’t. I love every word that comes out of his mouth.

Jillian turns 1 tomorrow. I am not sure I will have the time to write this tomorrow so I am writing this tonight. I can hardly believe that my little girl is turning 1. She truly completes our family. I will never forget the day I gave birth to her. When I looked at her, I knew immediately she was “Jillian”. I will always remember calling Jill after her birth to tell her the name. She had taken such interest in naming this little bundle of joy…She even mailed me a long list of names. In the end, we decided that Jillian was what suited her. Jill’s reaction was normal Jill and will stay with me forever. While she never met Jillian, I know she is with her every day. I miss her.

Until next time…

It takes a Village

I have learned a lot throughout my life. As a rule, I try to learn something new all the time. However, what I don’t like learning is things that affect my life negatively. One of those things is that I can only rely on myself. I know I say that with the absolute word “only”. I don’t mean 100% of the time. I would say 98% of the time. I haven’t been able to figure out why that is exactly because I always try to be supportive of others. It’s why I do what I do for work.

Personally, I have always had a difficult time asking for help…in other words I pretty much don’t ask until I am hanging by a thread and it is unraveling. I understand how important it is to take care of yourself and your relationships. I also know that divorce is VERY common among parents with children that have special needs. We have a child that needs extra support and understanding. Therefore, it makes it difficult to leave him with “just anyone” for extended periods of time. With Gage, things have to be done differently. You can’t reason with him like every other 3 year old. We pick our battles with him and usually those battles are for BIG things. For instance, right now we are focusing on potty training. That is the one area I don’t back down on with him even if it results in a 45 minute (or more) meltdown because he does NOT want to sit on the potty.  Anyways, I seemed to have digressed. My ADHD is kicking today.

I realize that support is imperative when raising any child, especially a child with special needs. It can be very stressful and you need that reconnection with your spouse. For example, Gage just started Pre-K (which he is adjusting fairly well…that’s a whole new entry) this week. It has been very crazy getting him adjusted to a different schedule. It has been nothing short of a miracle that I have been able to have him in bed AND asleep before 9 pm every night (thanks Melatonin). My point is during our days there is never really any time for my husband and me to connect. He leaves the house early for work and usually is gone until late in the evening. By the time he gets home, its dinner time and then he is ready for bed to start the whole routine over again the next day.

My question is what do people do if they have limited support? Because I am trying to figure it out.

Until next time…

Happy Birthday Gage!

Well I am 2 days late posting this but better late than never. January is my month of birthdays. It all starts off with Gage, then David, and finally Jillian. I am seriously considering celebrating the kids half birthdays.

I can't believe that my little boy is 3 already. I don't think I will ever forget his birth. He gave me quite the scare breaking my water 6 weeks early. Luckily, he only had to spend a few days in the NICU. At the time, I would have told you I was not going to go through that again. I have never been so scared. There were seriously more hospital staff in my room that day that I wasn't sure if we could fit anyone else in. If there was one thing I learned that day is that God is definitely in control. Well maybe I didn't learn it just then, but I was definitely reminded of it. I am not sure I have ever prayed so hard. My little guy came into this world all 4 lbs 14 oz with his own agenda and he has lived up to that. He definitely is not taking the road more traveled. He is carving his own way and teaching me along the way. He never ceases to amaze me. He has gone from not saying anything at all to saying words that I didn't even think he knew. He can count to 20 (with a little help). I would not trade it for anything in the world. He may not look at me all the time but when he does it makes me all the more happier. I never take for granted the little things. I waited to hear him say "Mommy" for almost 3 years and now I can't hear it enough. I always smile even when I feel like I could lose it. He does the sweetest stuff and says the most adorable things.

This week marks another chapter beginning for him. He will start a Pre-K class at an elementary school. He will be in an Autism class and I only hope that it helps him socially. I am starting to see him interact more with us and with other children as well. But he continues to stay to himself. He is also engaging in more pretend play.  David got him a little grill for his birthday and he immediately started to play with the food and prepare it. I know that God has great things in store for him. He has certainly already taught me a lot.

Until next time...

Eligibility

So today was Gage's eligibility meeting for services through the school board. David and I were very happy with the results. He will be going to a PreK program at an elementary school for a full day starting in January. He will also get speech during his day. This is a huge relief to me. I know that he will get what he needs on a daily basis and hopefully he will start to interact socially more. Overall, Gage is in the average range for his intelligence. He continues to have a big discrepancy between is receptive and expressive language. He understands far more than he can express. Every day it is getting better.

I know that we are lucky. Gage is not severe. This has definitely opened my eyes not only as a parent but as a clinician. I am very careful not to label anymore. The diagnosis does not define who you are as a person. Gage is not autistic. He has autism. There is a big difference. Gage is an amazing child who loves cars, trains, and planes. Autism never will define him as a person. He will learn to cope with the symptoms and do great things in life. As will every other child with Autism.

Until next time....

Little things

Well November is over and of course I failed to list what I was grateful for daily. I realized that even though I didn't acknowledge out loud (or in writing)  what I was grateful for didn't mean that I wasn't thinking about it. Actually I thought about it all day pretty much everyday...I was just too Exhausted to write it out.

I think this is the most valuable thing I've learned an I am thankful for.  I've learned to stop and notice the little things. Gage has taught me that. Tonight I was brought almost to tears by Gage. We were driving (ok I was driving) and all of sudden he says "red light stop" "green light go". I couldn't believe my ears. You see Gage never says anything when we are in the car even if I try to engage him. Most times I end up having a conversation with myself. So hearing him say 3 words together brought tears to my eyes...to be able to communicate with my son is so precious to me. I don't take that for granted. So to carry on any type of conversation with him is more valuable to me than anything else in this world.

November has been an eye opener for me. I have done a lot of soul searching and realized a lot (although I could do without the anxiety and mini panic attacks). I know that there are lessons to be learned in all of my experiences and I am trying wholeheartedly to open myself up to it. I am really trying to let go of what I can not control. It is definitely a daily struggle. I just know that is have to live with myself and my decisions and if I'm ok with that then nothing else matters. Life is constantly changing. We all have our paths that we must take. Just remember to try not to judge others unless you have walked in their shoes. I am trying to remember this for myself.

Gage has definitely taught me so much more than I have taught him and I am so thankful for this gift. Life is short and I have been reminded of this all to much recently. Make the most of each day given to you.

Until next time...

Grateful

I just got home from Trick or Treating with Gage, Jillian, Brionna, and some of her friends. I have to say as much anxiety that I gave myself over it, it actually turned out pretty good. Gage was bug. He doesn't like anything on his head or his face so we had to get creative. His grandparents (David's parents) got him a shirt that had a hood on it and it was a bug. So we used that and put him in black pants. I was not really caring what anyone thought and I dared them to say anything. I was very surprised and happy at how the whole experience went. We went to the first house and Gage wanted to just run right in. He eventually figured it out and it was really cute. He would run up to the door and put his pumpkin down. Then he would knock on the door and wait by his pumpkin. He would then attempt to say "Trick or Treat". If the people would let him pick the candy he actually would only take one piece. Everyone was so nice and would actually give him more. I am so relieved. I was afraid I was going to have to "educate" people. Luckily, it went smoothly. The plan was to only go for a few houses and we ended up going for almost 2 hours. There were no meltdowns and he followed directions.

I am one happy momma. It's the little things. Things that not every parent thinks about that mean the most to us. It's put life in perspective for me. We only have one life. We need to make the best of this journey. It's very easy to forget that with the hustle and bustle of life. But we need to remember to SLOW DOWN and take time to smell the roses and everything else around...even if it's not pleasant. Life is about the experiences and the memories...good and bad.

So with that I want to say Thank you to all those wonderful people we came across tonight that were understanding when Gage tried to come into their home, when he didn't look at their faces, when he used his sign for "thank you" instead of saying the word. I am grateful that this was a good experience for Gage and his sisters. That is what it is all about.

Until next time....

Perfection...

As I sit here trying to think about what to write, I want to say Thank You. Thank you to all that have reached out to me and said kind words. Thank you for supporting me and my family through this. Thank you for not saying anything because sometimes there are no words and just acknowledging that can go a long way.

Life is about all the moments we have and experience. Every path we walk is put in front of us for a reason. Sometimes we just have to get out of our own way. We spend (myself included) so much time holding on to crap that just needs to be let go of. That crap only hinders the person holding on to it. It has absolutely no effect on the other person. Gage has taught me so much and I am continually learning from him. I realize that this path we are walking down is full of unknowns and I'm learning to be ok with that and to get out of the way.

We were carving the pumpkin last night and David asked me if I had the stencil. I looked at him and replied. I'm not perfect and neither is Gage so we are going to have an imperfect pumpkin. He proceeded to draw the pumpkin face with no stencil and you know what...it's PERFECT! Gage smiled and laughed when we lit it up and that my friends is perfection. That is what it's all about. I was not really into Halloween this year and that changed it right there. Who cares if Gage is not wearing costumes like all the other kids. He's doing his own thing. I a going to cherish every moment and educate all I come across. If they want to be judgmental, that's on them not me. 

This journey is not at all what I expected but in life do things always turn out how we expect them to?   I am going to learn to let go of my expectations and I will follow his lead. After all it is his life, I am merely the guide God chose to help him along the way. Ultimately, Gage will do what he was sent to the Earth to do...not what I want him to do. I ask for strength on this path because I know it's going to test me, but I am ready

Until next time.....

The Appointment

I woke up this morning wishing I had slept more. It seems Jillian is liking to wake up for a bottle in the middle of the night or like last night 2 bottles. Luckily, Gage slept great. He also woke up fairly easily (usually he is a grump if I have to wake him up). So I got everything together for the appointment. I got Gage up first and made sure he ate breakfast. I wanted no issues.

We left right on time and made our way down to the Dan Marino Center. We got there early because I'm afraid of being late. I had packed everything I could think of to entertain Gage. It seemed I didn't need any of it at first as there was a train on the wall and he played with that for awhile. We were finally called back and met with the neurologist, Dr. Carlos Gadia. He immediately started to try to interact with Gage. He was even on the floor with him! I was very impressed.

After observing and interacting with him for a bit, it was time to talk. Gage was diagnosed with Autism Spectrum Disorder. The doctor said he is high functioning as he is very intelligent. He pointed out the decreased eye contact and him wanting to really play on his own. These are all things I see. He did order an MRI, EEG, and some blood work to rule out anything medical. We will see him again in January after he starts school.

I haven't really had time to process it all. It's overwhelming. I realized today that this isn't about me. This is about making Gage's journey through this life his! His path is just going to be different. I know that God doesn't give us more than we can handle. He also has plans for each of us. I may not understand now, but I trust Him. I just ask for strength on this journey. "Sometimes what we can't change ends up changing us."

Gage will always be my perfect little boy. I wouldn't change him for anything in the world. I love seeing the world through his eyes because it's different than my view and I learn new things. Thank you to everyone who reached out to me today. The support really helped.

Until next time...

Signs

I am just jumping right in today. It's been a crazy couple of weeks. I don't want to seem like I am complaining because I am not. I just wonder when I will get a break. Today I would have given anything to be a stay at home mommy for no other reason but to be with my children and help Gage. (I really need to win the lottery but that is another topic for a different day).

Let me start with work today...Thursdays are usually a day full of meetings for me. I started with my morning meeting as usual. At this meeting there is usually a video of some sort shown. Today it was about Richie Parker. This guy was born with no arms. Just watch the video. I wouldn't do it any justice trying to explain it. Well with everything going on in my home right now with Gage, it totally hit home.  Then I go to my office where I have another meeting with all the managers. Just like the first meeting, we generally watch a video of some sort. Today it was Kathryn Schulz talking about being wrong. I know the video is a bit long but take the opportunity to watch it. It took all my power to not completely lose it at work.

 OK I GET IT!!!!!!!! I just need a break. I totally felt like Jill was with me all day while all this was going on. I know what the message is. I am just not sure I am able to fully accept it without further evaluation. I have to remember that the things we can not change end up changing us. I know I am being presented with this path for a reason. I need to stop fighting it and open myself up to it. I am still going to have him fully evaluated by a neurologist and I also think I am going to get a Sensory Evaluation. I just want to make sure there is no other possible reason.

When I got home, it was time to get ready for the weekend. I am headed to Orlando tomorrow for Jill's Memorial at UCF. I know it is going to be good. I am just afraid that all the strength I have had in the last month is not quite there. I think this is going to be one big giant cry fest for me. I am ok with that. I think I haven't allowed myself to grieve fully. I have so much swirling around my head right now.

I know that I am not the only person to have shit (for lack of a better word) happen to me. I know it makes me who I am. I am trying to look at these situations differently. I am not perfect...I am human...I am a mom and I only want what is best for my children.

It's late and I could ramble on for hours about the same thing so I will stop now.

Until next time....

Coping

As I sit here, I've been trying to figure out what to write. I've had a rough couple days....not that I am complaining I am alive and relatively healthy. I guess I am just tired and really wish God would give me a time out. I know that he doesn't give us more than we can handle but right now I feel so overwhelmed.

I've been thinking a lot (which for me can be a double edge sword). The other day after Gage's evaluation I picked up the phone to call Jill. I knew she would know what to say. Then I realized she wouldn't answer. She always knew what to say...even if I didn't want to hear it. I respected her opinion. I would give anything right now to hear her tell me to stop feeling sorry for myself and to put my big girl panties on and advocate for Gage. I know I don't like what is in front of me but it is the path that God has given to me. I can accept that.

My little boy is special this I know as every parent knows that their child is. I wouldn't want him any other way. He just has a different path to walk. Life was not meant to be a straight a narrow path...that's not interesting enough. He will carve out his own way and create a path that is unique like him. I only hope and pray I can guide him along the way.

Until next time....

Labels

So my 2 1/2 year old has been work with Early Steps for the past year. Early Steps is Palm Beach County's early intervention program for developmental delays. Gage was delayed in the area if speech. He has made a lot of improvement but still struggles. I see him trying to communicate more often.  At his first evaluation last October, we were told that he needed to be further evaluated for Autism. Here is where I am going to go off on a tangent.

As an LMHC, I understand what a diagnosis or label means.  I am starting to think that society has forgotten what it is like to be an individual. This goes for so many other things outside of a diagnosis. On sports teams, I have heard of occasions where everyone on all the teams are getting trophies, schools wearing uniforms...those are just a few. What happened to the days where we were able to have our differences. Because a child doesn't act like the "norm" does that men there is something wrong with them. Couldn't there be another explanation?! Why are we so quick to slap a label on people nowadays. I hear all the time "my child has ADHD" or "I'm bipolar". News flash these are not great labels to have.  I feel like people want a label so that they have an excuse a reason to blame their behavior on.

I am in no way undermining the diagnosis or saying that people don't really suffer from these disorders. I am just saying that how can one be diagnosed with something after only seeing someone for a very brief time (1-2 hours). I understand what goes in to gathering the background information. I am just not sure we mental health providers have it right. Shouldn't we be using the least severe diagnosis until there is more diffinitive information. I mean at least see the person or child more than once and in different settings. God made us all unique and we seem to be taking that away from our children.

Ok I think I've said my peace on this for now. I will continue to fight for my child and the services he needs with the least severe diagnosis possible.

Until next time...