Friday, April 26, 2019

So that is what is wrong with him...

Seriously, I could not believe what had come out of this guys mouth standing behind me at
Chick-fil-a.

To begin, After a trip to the library we ventured out to Matthew's favorite place Chick-fil-a. We were standing in line and a guy saw that Matthew had on Manchester United and Liverpool. He proceeded to let me know that I should not allow Matthew to wear both at the same time. Ummm thanks for the advice. Now I get it, and believe me when I say Eric has had to learn to deal with this at home. But Matthew is Matthew, he LOVES European soccer and wears ALL the teams jerseys. He now has his favorites but he still supports all teams. This Guy could not let it go. After letting me know I should not allow him to wear them together he went on to say that Matthew's dad needs to do a better job in helping Matthew select just one team. I thanked him and said Matthew is into all soccer and we let him pick out what he wears. I seriously think this guy was twitching with the thought of the two teams together. I did not even want to ask which club he supported, I just told him I am sure one day he will have his favorite. The conversation carried on, he was very passionate that we were failing as parents by allowing our child to wear both, finally I said Matthew has autism and he loves everything about soccer and enjoys wearing all the teams. And here it comes...
                        SO THAT IS WHAT IS WRONG WITH HIM!
 Are you kidding me, because my child has autism that is what is wrong with him. NO that is not what is wrong with him, that is what makes him incredible. He could care less about having to have a favorite, can't a kid just love the sport. I wanted to go on that my kid probably had more knowledge of European soccer then he did. He saw my face and started trying to correct what he meant. It was too late, the words were out and I was crushed. Thankfully the line had moved and we went on to order (I got it to go) and we left.

Sadly this happens more then it should. People want to share their opinion. I was very understanding on the wearing two teams at once, we get it but when someone so casually says autism is what is wrong with your child, ugh, I am at a loss for words.  This is why I want to spread awareness.




Wednesday, April 24, 2019

Holidays

Easter was a success. You never know how holidays will go with Matthew. We say Matthew has a love hate relationship with holidays. He is excited, he enjoys them, but they are very overwhelming for him. The schedule being thrown off, the meals being changed, the noise levels it can bring...
I was thinking about the different holidays and 2 really stand out that can give a good outlook on someone on the spectrum.




1. 4th of July. This day we were going to keep it simple. A kid parade in our town with our best friends. As you can see in the picture Matthew wanted to stay with us. Doesn't he look so excited. He could not ride a bike well and did not want to walk so he watched until the big boys convinced him to join them for the end of the parade. After the parade he went on to the bounce houses and had so much fun. When it was time to go he decided he was ready to do the parade on his bike. The problem was (1)the parade was over and (2)I did not bring his bike (mom fail right there). At that time Matthew was really struggling with choices and accepting the decisions he made. He could not grasp the concept we were done and had to go home. The meltdown began when it was time to get in the car. We must have been a sight having 7 people jump in a suburban and close the doors to block out some of the screams. Matthew had a meltdown all the way home and for awhile once we got him out of the car. Both Eric and I ended up sitting in front of doors at the house to keep Matthew from running out of the house. After awhile Eric ended up putting Matthew back in the car with Joshua and those three went back to the parade route. They walked one block with Matthew on his bike and all was right in the world. Was this giving in? I used to ask myself that question a lot but then I entered Matthew's world. We were quickly learning the line between spoiling Matthew, giving into his meltdowns, and knowing when we needed to help him. This time we knew he could not move on with his day until all was right in Matthew's world.



2. Christmas, more specifically the one Christmas that I made the ladies in my family cry. I know, great right. We had my brother, SIL, and nieces in town. We went to my parents house for Christmas lunch. All of my other siblings and their families were there too. Matthew was enjoying himself but you could tell it was getting too much. Then it happened, a meltdown in front of the family. Matthew tends to keep his meltdowns for when he is home or just with us. He never had one in front of the family. Oh boy, for 30 minutes this kid questioned when he was going to see Santa. We had told him Santa would come on the 25th, never thinking we needed to further explain that it would be while he was sleeping and he would never see him. He wanted to see Santa! This was just what set him off. The questions, the tears, the screams, the meltdown. The ladies in the family felt helpless as Eric and I tried to calm him down. They started to cry and had to leave the room. I could tell them about the meltdowns but this was the first time they experienced one. We ended up doing the grab and go with Matthew. Eric picked him up, I was grabbing all the stuff. The big boys jumped right into action. Caleb, Joshua, and Eric all had to work together to buckle him in the seat. Joshua rode home with Eric in the back seat to make sure Matthew did not take off his seatbelt. I stayed behind with everyone else to gather the rest of our things. Matthew continued his meltdown all the way home (45 minute drive). As soon as he was home and in his space he was good. We say Matthew is like a coke can, all the changes that day was like we were shaking that coke can until it exploded. 

Holidays can always be a challenge for kids but holidays with a child on the spectrum is on another level. We spend so much time preparing for the day, talking about what to expect. What the schedule will be. We always take two cars so one person can bring Matthew on home if it is too much.

We do use these days to challenge Matthew. On Easter he wanted to know when our family was coming over and when they would leave. We gave him the time we should expect them however we told him we did not know when they would leave. I knew this bothered him and he was learning to adapt with it. He asked (A LOT) about the time frame. When they were running late more questions came up. The pacing in the house, they comments that they should have been here by now, they said 11:30 why did they not walk in the door at 11:30. The concept of running late or being stuck in church traffic leaving the parking lot was too much for him to understand. He is very black and white, they said 11:30 so they need to be here then. (We deal a lot with this at school too, his teachers know not to mess with Matthew's schedule). We again went over the schedule for when they were here. He would talk through them being late and not knowing what time they would leave.  This showed us growth in how he is learning to handle things. Holidays will always be another therapy session for Matthew.








Thursday, September 29, 2016

Autism Diagnosis

It has been a little over two months since I have sat down to blog. I told myself when the twins started preschool I would catch up. They started the first week of September and I am finally taking the time to blog. What has been going on in the past couple of months... so much! College trips, preschool begins, another one in high school, one in middle, lots of soccer, etc.. I plan on using this weekend to catch up on those blog posts but wanted to start back to the blog with more of a personal/family post. This has to do with the entire family but mainly our sweet Matthew.

Our story..
Matthew has always been delayed in his speech. We started speech therapy at 2 1/2. After 6 months of speech every week the therapist thought he was doing great. She recommend us putting him a special class at a local elementary school to help with his socialization. It was tough at first but he adjusted and enjoyed his special time out. Towards the end of the class the teacher suggested I go back to the county for more testing. You know when you have that feeling that something is just not right, I had it for a while now I just needed that little push.
This begins the process of all his testing. We started with having to go to preschool services so they could watch him for two hours. I sat there watching my little Matthew on the other side of the glass. At times I had tears in my eyes as I saw how far behind he was. Other times I wanted to bang on the glass and tell her not to mark him off for that, he knows exactly what he is doing, he is just stubborn! Thankfully he had the sweetest lady to start us off with the testing. She listened to me when I told her my diagnosis was 5th Child Stubborn Twin Syndrome. She said she had never heard of it but would look into it  for me :)
Within a few weeks we heard back that the county would now like to evaluate him. Seriously we had to go to an evaluation to see if we could be evaluated for the next steps. 
It was off to our first official visit to meet our case worker and the team that would be evaluating him over the next 3 months. They all spent sometime with him while I filled out the paperwork. After the visit they all decided that they will now begin the formal process.
Next we were off to the audiologist to make sure it was not his ears. (He failed that test during the initial evaluation). I told them I was not worried, this kid hears everything. As soon as my coffee pot is on he is down the stairs. Sure enough after an hour of testing they gave him the all clear.
Next visit-the psychologist. We spent 2 hours with another sweet lady. She was also a mother and a grandmother. It was nice to have someone who had a lot of experience! Towards the end of the visit she expressed with me her concerns and said she would be at the next visit with Matthew to go over them with the other case workers.
Last visit with Matthew in attendance. Another long visit. More people watching Matthew. Lots of writing on clipboards. Lots of hmmm, ohhh, ok well lets try this.....not a fun process at all. It is so tough sitting there watching your child being evaluated over and over again.
6 weeks later we had our meeting to get the results. We received a 12 page report with their findings then went in to sit down and go over all of it. The psychologist had already spoken to us about the possibility of autism. I went in thinking high functioning, mild, 5th child twin stubbornness. It was hard to read the words on the paper when it says Matthew-moderate autism or level 2. I look at this sweet boy of mine, it is still just a simple speech delay. It is a twin thing. It is because he is a boy. It is because his sister does all the talking for him. It is....autism. When you first look at Matthew you would not know it. He is very social. He has great eye contact. He has no problem going up to give someone a high five, fist bump, or hug. When we took the twins to their 4 year old check up and told the doctor that he was being tested for autism he was surprised. 45 minutes later he said he could see why and he would be there for the support we need.
Their recommendation. Initially at the appointment they wanted to pull him from preschool and place him in a special school. After speaking with all 4 case workers about my concerns and wishes we decided to keep him in preschool with Abby. He is actually walking into the school now without having to be pulled off my leg. We know the therapist who works at that preschool and she has requested to take Matthews case for us.
How did we know...Matthew has always had little issues. I would tell the therapists I have 5 kids something is just not right. He is very set in his way. He does not handle change well. His speech is still way behind. He is very repetitive in what he says. He has a good vocabulary but a lot of what he says is what he has heard us say. He is very stubborn, more then your strong-willed child. We had to stop going to certain places. Chick-fil-a playgrounds were too much for him to handle. We started doing the drive thru and then would run over to Krispy Kreme as his treat. We turned down invitations to friends houses because we knew it would be hard with him and we did not want to mess up his schedule.  We rarely went to events as a family. If the boys have something one of us will stay home with the twins. We don't want to take away from the boys having a good time. We want to keep things as normal as possible for them.
Speaking of the boys...they are amazing!! They are so good with him and take turns helping out. They have been so patient when we are in the car waiting for a meltdown to end. They are also very helpful in helping me get him buckled when he gets his superpreschool(my new word) strength and I can not get him buckled in. They will listen to him repeat things over and over again. The other day on the way home from church Matthew mentioned 54 times No More Church. That is always fun to hear.
Now what...we hope to begin therapy this week or next. He will be in therapy three times a week while he is in preschool. He will be able to work with 2 different therapist. My goal is to keep him with Abby. The case worker believes we will be able to move him from moderate to mild with therapy. He is a good learner, it is more the social and communication part we will focus on.
How are we.. it was a tough day last week listening to everything. At that point only a few family members and friends knew what testing we were doing.  It is hard when you ask your child basic questions and they can't answer (like a normal 4 year old). He can not tell me what he did in preschool. He does not understand the concept of bringing a special toy to school to show his classmates. Abby usually picks it for him then will stand with him to tell the class. His classmates can not understand him, he speaks clearly with us but at times he is back to babble. He has not spoken many words to his teachers and he has been there 10 days. Those are the moments that make this hard. Then we have the other moments--Matthew does have his passion. Soccer, more specific the Champions League! This kid knows all the teams. He likes to read his European Soccer Book before bed where he tells me what each jersey is. He will watch a game and mimic the players moves. He is in love with soccer. Eric is still trying to teach him he can not have Liverpool and Man U as his favorite teams, he must choose one.

Then there is his dancing. If you are ever standing around us you will notice my kid breaks out into his dancing. He loves to dance to the music in his head or the music around. The other day at church we were in fellowship hall for donut Sunday and he was dancing away like he was the only kid in the room. High School soccer season is the best for this kid--Music while they warm up, soccer, music at halftime, then more soccer! Yes! This is his happy place. This is where he has the biggest smile. This is what makes the tough moments ok, how can in not be when you see this smile!!!

Since his diagnosis I have had some great advice on things that will help. We are trying a new diet. He will have his therapy. I have also had random people ask are you sure? What if they are wrong? I don't think he has autism. He has eye contact so he can't be autistic? My kid was like that and he is just fine, it is normal. He is a late developer. He will grow out of it.  Oh boy, as if this is not overwhelming enough. I just smile and say we have had 6 social workers, therapists, or doctors...so I think we are going to go with their diagnosis. No his appearance on the outside will not show your classic case for extreme autism. Because he is not extreme. He is on the spectrum, it is a large spectrum. For now we are going to work with him and his therapist, we will get him reevaluated in 2 years. For now we are going to enjoy this sweet smile and sweet boy! My Matthew!






Sunday, July 24, 2016

Dating my husband- July

This month all the kids are home from school. We have spent most of the month traveling and having family time. Instead of going out to dinner we spent time outdoors. While in the mountains we would leave the kids at the house with my parents and we would enjoy a nice walk on the mountain. While we have been home we like to head out after the twins have gone to bed for a walk in the neighborhood. It is such a nice break to get some fresh air and spend time together. I love this time of year!

Special Talks with Grangran

While in the mountains my dad sat with each of the kids to have a talk....

Abby can never date

Water Gun Fun

One of the highlights for the kids is the epic water gun battles up in the mountains.

Trip to the Waterfall and moutain river

The boys love climbing the waterfall when they go up to the mountains. This time they brought Grangran with them. After the waterfall it was over to the river for some swimming.

4th of July

The kids love coming up to the mountains for an old hometown parade. We were all ready in our red, white, and blue to head down to Boone.
After the parade we went to the town square for cake and watermelon before heading back up the

Mountain Vacation

We were all looking forward to our first mountain trip of the summer. After a busy June it was nice to start July off with some family time. It is always so relaxing to come up to the mountains. We played corn hole, went fishing, went to the park, enjoyed long walks in the mountains, rocked in the rocking chairs, played Frisbee golf, made slingshots, and just had fun....We also loved being up there for 4th of July to enjoy the hometown parade and fireworks.

Luke- NCSU Soccer camp

Luke was so excited about his first sleep over camp. He has been counting down the days for months! We sent Luke with his good buddy Sawyer. Those two had a great time. They were right next door to

Twins First Movie

We took the twins to see their first movie- Finding Dory.





















Abby was so excited about it, she kept telling everyone that Caleb's first movie was Finding Nemo.

Twins 4 year old update

Every year I try to get a special picture of the twins for their decorations and invitations.
I love to capture each of their personalities.

June Updates

Matthew finished school

This smile! I am so thankful we finished this class with smiles.
He was so excited to make his teacher a special thank you gift and bring it to her.
Every Friday I would take Matthew to a learning class. This class was to help him with his speech and work on learning what to expect school. After the first month I almost dropped out. Matthew

June-Dating my husband

The boys did not want us missing out on our monthly date. They offered to babysit one night so we could head out for a nice dinner at Twisted Fork. Yummy! It happened to be restaurant week so we tried some new dishes and dessert.