Posts tagged ‘special needs’

A Promise Fulfilled

You may all remember my post from a few month’s ago called, “Can I Offer You a Kidney”. For those not familiar with it, here is the link:
https://thisausomefamily.wordpress.com/2015/05/12/can-i-offer-you-a-kidney/

Sometimes people say things they will do, as a kind gesture. Even if they never follow through, the fact that they offered is a lot to be thankful for. Freddy DID follow through.

Freddy and his wife, Chaquira, made the trip from New Jersey to fulfill the promise he made to us. This was after he worked in his shop all day, until 8:30pm. They left New Jersey at 9:30pm. They drove all night and arrived here, in Virginia, at 5:00am. They slept for a few hours and then he texted me saying he would be here when I wanted, because his day was dedicated to us.

When they got here, Jason gave them a tour of our new home. Then, Freddy got down to business. Even though the venue changed and he was cutting Michael’s hair in my backyard, nothing else changed. There were lots of laughs. Michael made sure to remind Freddy to not cut his ears off. That is a reminder Freddy gets every time from Michael, from day one. And he sat, as he has from their first meeting and let Freddy cut his hair.

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Of course, no cut with Freddy would be complete without a spray paint of color. That is Michael’s favorite part, and Freddy didn’t disappoint. Jordan also got into the act this time as well. ORANGE HAIR FOR ALL!!

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Freddy said something a few weeks back on one of my Facebook posts that really hit home with me. Freddy, I hope you don’t mind, but I am sharing it here.

He said:
“Some clients are clients, some clients become friends, some clients become family. I thank God I had the opportunity to meet Joan Leigh Flores and her family and gratefully consider them part of mine.”

Freddy..my friend..my family, I have said it before. No words can properly express my gratitude for what you have done. You are one of kind, you are generous, you are amazing and I I am forever grateful that our paths crossed.

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Can I offer you a kidney?

A few times in the past I have spoken here about Michael and haircuts. If you are an autism parent you already know how difficult and utterly exhausting getting your child’s hair cut can be. His first cut was a horrible experience, for us both. After that first cut, we were both ruined for a while. I decided I would start cutting it myself. He still cried. It was still exhausting, and it still took the rest of the day for him to recuperate….every. single. time.

Over time things got better with me cutting, but I am no barber. It always looked okay, but it definitely could have used professional help. One day driving through town, I noticed a barber shop I had never seen before. I took David first. I met Freddy. He did a really good job, and David was comfortable. I thought for a bit and decided I would TRY to take Michael. I expected to walk out in tears. When we got there, I explained that Michael was autistic and really didn’t like cuts from anyone. Freddy talked to him. He joked with him, and made him comfortable. I was in shock. We have always gone back. Michael actually asks to go back.

So when we decided we were going to move, it hit me. I would have to find a new barber for Michael. The thought turned my stomach. The level of trust he has built with Freddy is not something that comes easily. Now we would have to start from square one.  Last time I got Michael’s cut I jokingly (but seriously too) said that if I had unlimited funds I would fly Freddy back and forth just to cut Michael’s hair. Freddy and I are friends on Facebook, and he saw that post.

Well, this weekend I went to get Michael’s hair cut. As we were getting ready to leave, Freddy asked when we would be moving. I told him, in the the beginning of July.

He said to me…..ready…..I hope you are sitting….

He said to me, “My wife and I talked. We will go down to Virginia before the school year starts, so I can cut Michael’s hair.”

I thought I was hearing things. I must have looked like a deer in the headlights and I obviously thought that he was joking. As a matter of fact, I must have asked six or seven times if he was. He was NOT. He was dead serious. He also was not already planning to go to Virginia. The purpose of his trip, from New Jersey to Virginia, would be to cut Michael’s hair.

How do you thank someone for a gift like that? How do you make them understand just how much the gesture means? I still am not sure.
Dinner?
A gift certificate?
A kidney, maybe?

For now, this post is my thanks to you Freddy. You have no idea what that means to me…what it will mean to Michael. You have shown a level of kindness that I don’t know I could ever repay you for.

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Both of those pictures were taken after Michael’s very first visit to Freddy’s

This little girl

You all know I have talked so many times in the past about Jordan. She is Michael’s younger sister. Younger, but not by much. They are only 14 months apart.

She is truly an amazing little girl. I really am not only saying that, because she is mine. She has this quality about her. Is it because she has an older brother with special needs? Would she be this way if he was not autistic? I don’t know the answers to either of those questions. What I do know is that there are times that I am completely in awe of this little seven year old girl. She is wise beyond her years…exponentially.

Over the weekend we started talking about roller skates. She has never been on them, ever. However, she really wanted a pair. Jason and I discussed it, and decided I would take her Sunday to buy her a pair…with all the protective gear.  When we were getting ready to leave Michael asked for a pair too. In the back of my mind I kind of knew he was asking because she was getting them. I told him I would take him next time. Jordan said, “Michael, I will get them first and you can watch me skate. If you think you will like them after you watch, then mommy will get you a pair of your own.” She is wise.

We got home with all her gear. I took her outside to test them out. I held her hand and she was soooo wobbly. But, she was holding her own. Michael and David came outside to play. Michael was trying to keep busy. She wouldn’t stop watching him. She was throwing ideas out.

Jordan: Wobble wobble wobble, “Michael, draw with the sidewalk chalk.”

Me: “Jordan be careful and watch where you are going.”

Jordan: “I know mommy.” Wobble wobble wobble, “Or you could play tag. But David, don’t run so fast so he can catch up.”

Me: “Jordan, please be careful.”

Jordan: “I KNOW mommy!” Wobble some more, “Or play hide and seek, but don’t go behind the house because then we can’t see you”

….and so on and so on…

All the while, she was trying to learn to ride in her new skates. Jason took over for a few minutes while I walked away and when I came back, there she was. She was doing it, all by herself. She was rolling around the driveway, but those eyes were fixed on her brother. She was keeping close watch, until he had enough and decided he wanted to go back inside.

She is ALWAYS watching him. She is ALWAYS protecting him. She ALWAYS cares…about everything and everyone. Most undoubtedly the reason she got this in school on Monday.

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Here is a picture of her in her skates. They are already looking worn in, and she loves them.

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Do I have a future roller derby girl on my hands? Maybe. I don’t know.

What I do know is that we were so incredibly blessed when this little girl came into our world.

The view was amazing

Friday was “Dress up as your favorite book character day” at school. Michael wanted to be Baby Bird, from the book Are You My Mother. I posted this picture last week:

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He didn’t want a real costume so I made him that. He loved his wings, and was so excited to go to school and show them off.

What I didn’t realize until he got home from school, was that he really WAS going to get to show them off. Jordan began to tell me that there was a contest in school. Children were picked from each class and brought up on stage. Well….Michael was picked!

A friend of mine, Jessie, saw the picture I posted and sent me this message about what her son Owen said:

“I think Michael should have won the contest.  I dont know his last name, but he was at our bus stop.  It wasn’t just his costume, it was the way he walked across the stage, he did so well”.

As I read that message to my husband, I could not hold back my tears. What a sweet thing Owen said. He has a heart of gold. And…AND, I imagined Michael walking across that stage…beaming..so proud of himself.

I have been crying an ugly cry, with happy tears, while writing this.

I wish I had gotten to see that moment. But, thanks to Owen, I got to see it through his eyes…and the view was amazing.

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***Many thanks to Jessie for sharing her conversation with Owen, with me***

Life is a Wiggle

Yesterday was IEP day. It always causes me anxiety and stress. It was the reason that this meme was born:

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In the days leading up to it I try to mentally prepare myself for it. I have to admit, I can’t say I have really ever had a bad experience. For that, I am grateful. I really do feel that his team has always had his best interests at heart.

It is just the whole process that puts me on edge. It makes me feel..anxious, uneasy and uncomfortable. I have always attended the meetings alone. Unless of course you count last year. Jordan, my 6 year old at the time, had to come with me. I jokingly called her my “Little Enforcer”.

Yesterday’s meeting went well. He got the services I believe he needs.

The part that gets me, is hearing about where he struggles. It is not something I talk about here often. He does struggle, in so many areas. It is hard to listen to. I know it is coming, but it never makes it easier to hear. Of course I hear the good things too, but it is the struggles that stay in the front of my mind. I left and felt, for lack of a better word, Blah all day. I spent most of it in a sort of fog.

Then, he got home from school. He got off the bus and flashed his handsome little grin at me. “Hi mommy! You know, it is raining out!” He proceeded to walk to the car giggling, and trying to catch the raindrops on his tongue. I just watched him and smiled.

We got home from the bus stop. “Mommy, will you come watch Angry Birds Tunes with me?” Of course I did. And he laughed, his most contagious belly laugh. How could a person not feel better after hearing their child snort from laughing so much.

Yep…some things are more difficult for him, and they may always be. I don’t know what the future holds and I TRY not to think ahead too much. BUT, he works so hard. He has made such progress over the last few years. I have to remind myself of that on days like yesterday. There will always be hiccups, but he is healthy and happy. I really can’t ask for more than that.

As I was writing this, I saw my friend Jane post a picture of the fortune her daughter Janelle got in her fortune cookie. I loved it, and thought it was fitting here:

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Just a Boy

For some reason today, I decided to ask my almost 9 year old what his brother’s autism meant to him.

He looked at me puzzled for a moment and then said, “It means we take extra care of him.” That was it. That was all he gave me. I didn’t want to push and ask more. But, I couldn’t help myself.

“Anything else?”, I asked.

“Not really mommy”, he replied.

Then, quickly it hit me. As an “autism mom”, sometimes I get so wrapped up in it all. (the diagnosis, the doctors, the therapies, what others think…the list is endless)  I need to remind myself that autism is only a very small part of who Michael is. Because after all, I am not perfect either.

To David, Michael is just his little brother. Sure sometimes he needs to have some extra patience with him. But to David, Michael is the boy he plays with, laughs with and fights with. He is just his little brother, that needs some extra care. So profound. So simple.

I can only hope that as he grows older, that Michael will have the love and understanding of lots of friends who see him just the same way David does….as just a boy, and friend, that needs more care. ❤

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Inappropriate Hugs

Doctors..It can be tough to find a good one, or, dare I even say great doctors. When you have a child with Autism or special needs, I think that challenge becomes even more difficult.

Well…when we moved to this area my second little guy was just born days before. (this is the boy with autism,  but obviously we were unaware of that yet) So, I was armed with a referral from my current pediatrician for a new doc here in our new hometown. I went..office was ok. Always was seen right away, if needed. But, nothing spectacular. Fast forward about 6 years. Middle guy starts getting fevers 3-4 weeks. What do I get every time we walk in, without so much as a 5 minute visit…..here comes that word….virus. Several visits went this way. Blood work was run once and came back normal.  I just started feeling like maybe there was something better out there.  I felt that maybe they just weren’t taking the time or were to busy to possibly see that something else could be going on. So after a long time there…I made the switch. All along worrying if I had made the right decision.

Let me tell you…ALWAYS GO WITH YOUR GUT! What a difference. The very first visit there was once again a sick visit for the boy. I felt like I was in a different universe. I was in the office, the doctor asked questions and answered all of mine. AND get this, he personally called me the next day, Saturday morning, to see how the boy was feeling. Umm…I was speechless for a second, never once had I received a follow up call from the old office. Wow, I thought, they actually care!

I have 3 children and each time I am the new office, even though I don’t always see same doctor, they all give that same care and understanding.

The boy went went for his annual check up yesterday and I voiced my concerns about his fevers. For the first time since this whole saga started, I started to feel better. Not because I have an answer as to why these fevers are happening yet, but because I found doctors that are willing to take the extra step and time. He listened, examined the boy and gave me a few ideas of what he thinks it could be. We will monitor him and I will be in close contact with the doctor about the boy, at the doctor’s request…not mine. It was perhaps the best doctor visit ever for me. I could have hugged him on the way out, if it wasn’t considered inappropriate 😉

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We still have a ways to go to figure it out, but at least I feel like I have great..yes I said great..doctors standing behind myself and my children.

You are you child’s voice..if you feel in your gut you need to make a change..do it. As parents we know our children better than anyone…and sometimes we just need to remember that.

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The views expressed in this blog are opinions. This blog is not intended to diagnose, treat, cure, cause, worsen, or delay any disease or mental health state. To contact me, e-mail aspieblogger@gmail.com

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