A Great Day

I haven’t blogged in a while. Since school started we have been busy. Jesse with his duel enrollment and him not driving has made me a taxi driver. However, I would rather drive him and know he is safe than for him to drive and not be ready. Clay and I didn’t mind hanging out in town when we could play at the park and walk, but when the weather turned cold it hasn’t been fun! We are ready for a good, long Christmas break! With that said I will catch everyone one up with what has been going on.

We have attended two Buddy Walks. Atlanta and Chattanooga Buddy Walks. We had fun at both. I am so thankful to everyone that donated and attended.Atlanta Buddy Walk was very hot, it was in October.

The Chattanooga Buddy Walk we were cold. It was the first weekend in November. Both were great. My niece designed the Atlanta Buddy Walk shirt.

Check out that great shirt by Kristen! She is so talented.

Then between the two Walks we did Halloween. We went with a Grinch theme. Clay loved his costume until the day of Halloween. He wouldn’t wear it, but he loved riding in the sled.

We went all out!!

Once Halloween is done I get excited for Christmas and start decorating. I don’t know if the tree is going to make it until Christmas. Clay has pulled ornaments off and some part of his body has to touch it as he goes by it. He also has tried three times to open presents that are under the tree. Clay is ready for Christmas. Trust me I didn’t forget about Thanksgiving. I love Thanksgiving! We ate three different Thanksgiving meals. I cooked for two. We had a wonderful time with family.

The week of Thanksgiving we had Clay’s yearly blood work done. I came back that his thyroid was slightly elevated. Clay hasn’t been himself for over a month and I thought it was due to the ear infection he had. However, now I think it might have been thyroid related. Plus, he hadn’t been sleeping well either. Today is Monday December 3rd and Clay has been on medicine for his thyroid since Friday. Today has been the first day that I feel like Clay has been himself. He did amazing at school, but he was the only student today. Clay does better one on one, so it may not be the medicine regulating him. He just enjoyed having everyone’s attention. Clay will be four this month and his school IEP is coming up Thursday. His teacher and I talked some today about Clay’s options. She feels he is pre-k ready. He knows his color, ABC’s, and is ready for more interaction. She feels he will do well in full inclusion. Now to decide where to send him!!! When we got home, put the groceries and ate. It was nap time. Clay was a little stinker. I laid down with him and Clay says in a crazy voice “I love you honey.” So I say it back in a crazy voice. He laughed so hard and I started laughing too. I love hearing his laugh. He kept that up for about five minutes. Anything to try not to sleep. After that tactic he started kissing. I am a sucker for kisses. It took me an hour to get him asleep. So I got him asleep and snuck out, hoping to get a couple hours to myself to get somethings done. As I started this blog I heard his door crept open! That turkey only slept twenty minutes! No me Time! Oh well!

Clay also started a new program called “So Happy to Learn,” we are enjoying it so much. Terry Brown that started the program is out of California, she specializes in teaching kids with Down syndrome. Clay and I both are really enjoying it. I seen her on the show Born This Way, she was working with Rocco on the show. I soon found her and joined the program. Clay is doing amazing things! Don’t limit me!

I hope everyone had a great Halloween, Thanksgiving and I hope you all have a very Merry Christmas.

Advertisements

What Pre-k has Taught Me

Clay turned three in December and started pre-k. The Early Intervention Program releases kids from their program into state pre-k schools. The therapies that Clay received from the program are now to be received at school. As I said in a previous blog, Clay tested high, so he will only receive Speech at school. So he is going two days a week for an hour and receiving Speech therapy both days for thirty minutes. Clay hated school January-May. I am now volunteering in his room while he is there. He is no longer crying, but I now see why he is struggling. I also know why so many people dread IEP’s. My first one was easy, but I didn’t really know how Clay would do in school. He had never been before, Nor had he been without me! I now know how he acts in school and why. It is great being a fly on the wall. Now I know what my son will need in his IEP and then some!!! Here is a couple of things:

1. Don’t expect a three year old to sit still for an hour. Clay works hard for me at home, but he is done after 10 minutes and some days less. He will go play and get the wiggles out. Then he will come back and work again. I have taught him a lot of great things.

2. Speech therapy should not be shared with another student. I will make sure he is pulled out to a quiet room with no distractions and just him and the therapist. Clay is now doing speech therapy in the classroom with another little boy with Down syndrome. They are both completely different in speech. There is just way too much going on around him for him to pay attention.

With all that said, I do like his teacher and everyone that works with him. However, I don’t agree that every child is alike and has the same needs. Now, with that said I have spoken to the OT that is there on Monday’s, that also has worked with Clay, a lady that I know well, knows Clay well, and went to the IEP with meeting with me. She is going to be meeting with the teacher in a couple of weeks to change up so things for Clay. I am not going to fight for everything right now. Clay’s IEP meeting will be in December and I will then make changes with Speech and put in writing that he needs wiggle breaks. The OT will be coming up with a solution for Clay to get his wiggles out soon. The OT has worked with Clay and she worked at a table with him then after he said “all done” she moved him to a physical activity. Then they went back to the table and worked again. So I know she will come up with a good solution. For now that will hopefully make school easier on Clay. That child is never still. The teacher even expects them to sit still during music. She has five rules for music time and music can last thirty minutes. If I had a dollar for every time I have had to tell Clay to sit down or show him the cue card of person sitting…..I would be very rich!!! The struggle is real!! I am as frustrated as he is when we leave and want to run out too. Clay runs out the door when it is time to leave. I completely understand why now! Mom is running out too. So both of my boys will tell you they do not like school and I know why. Clay hates sitting for an hour and Jesse has social anxiety. I was that weird kid that liked school, everything about it!! Learning and social side, mainly the social side of it. Having a Cosmetology program in our High School made it even better. Praying school gets better soon. I know I will not always get to be a fly on the wall, aka a volunteer in his classroom so now is my chance to figure out what will make Clay a successful learner. Only 20 more years of school left.

Stealing Thunder

When your DaDa makes it to the big FLW All American Tournament……what do you do? You up stage him on the stage. Clay took over the microphone yesterday at the weigh in. Heath fished against forty-nine fishermen. He had to end up in 10th place or higher to be able to fish the third day, for the grand prize. He ended up in 9th. Today is the 3rd day of the tournament, it is Saturday June 2nd. We left Georgia on Monday driving all day to Louisiana. Clay did better than I ever expected. I thought we would have to stop and stay somewhere along the way, but once again Clay surprised me. We drove it in one day!!! Yay!! The FLW booked everyone in the tournament a room at the Shreveport Hilton. So we headed up to the roof top pool Monday to swim off some energy.

We met a lady at the pool that kept on talking to Clay. When she left she told us about her experience with kids with Down syndrome. She is here too for the fishing tournament. We have seen her every day and she calls Clay her buddy. The next day we met an older couple. Her husband is 70 and fishing the tournament. As we talked she told me she retired from working at a Down syndrome clinic. We had to tell them bye last night, her husband didn’t make it to the top ten. We have met some of the sweetest people on this trip. I have said it before and I am saying it again. Everyone has always been so sweet to Clay. God has put some wonderful people in our path. The next day at the pool we met another sweet family with two little girls. Clay played with them and then danced last night at dinner with them. We again had to say goodbye to them last night too. Their daddy didn’t make the top 10. Another angel is the security guard at the hotel, he always talks to us every day. I told Heath last night that we had met some of the sweetest people.

The trip has gone well, but I am exhausted. I knew it would be exhausting. Clay is always into everything. The door lock isn’t high up on the door, so he can unlock it. You can’t take your eyes off of him. It is very hot here too, extremely hot. There wasn’t a dry stitch on me yesterday after the weigh in! I told Heath trips like this is hard, because I don’t get to let me guard down any and relax. If I had a dollar for every time I have say “no” I would already have the grand prize money!!!

Sleeping in a different bed without rails to keep Clay from falling off is exhausting too. I have a chair up against his side, but I could pack my suitcase in the bags under my eyes!!

Before we left Georgia I found seven four leaf clovers. Walking to day 1 weigh in I found $10. The next day a penny was on the ground. I called my mom before I touched it. She knows all the superstitions and old wives tales. I had to ask her if heads of tails? If you see a penny on heads you pick it up and give it to someone for luck! I am not normally superstitious, but not taking any chances. Praying for big fish swim Heath’s way today….momma needs a new pair of shoes!! Lol Just kidding! The boys need a trip to Disney!! Bring on the big fish and the grand prize 🍀

Define Love

Last night I was cuddled up to Clay and he had his arm around me. As I lay there and he falls asleep I think about how much I love him and Jesse. The word love just doesn’t seem strong enough for the feelings that I have for them. When you look up the definition for love you will get several different descriptions.

love

ləv/

noun

1 1.
an intense feeling of deep affection.”babies fill parents with intense feelings of love”

2 synonyms:

3 deep affection, fondness, tenderness, warmth, intimacy, attachment, endearment; More

2.
a person or thing that one loves.”she was the love of his life”

8 synonyms:

9 beloved, loved one, love of one’s life, dear, dearest, dear one, darling, sweetheart, sweet, angel, honey; More

verb

1 1.
feel a deep romantic or sexual attachment to (someone).”do you love me?”

2 synonyms:

3 care very much for, feel deep affection for, hold very dear, adore, think the world of, be devoted to, dote on, idolize, worship; More

Is it a noun or a verb? Love is so many things for so many people. Also, people feel love in different ways. What is your Love language? So many ways to show love. I definitely want my boys to know and feel my love!!

A mother’s love is so strong, protective, and beautiful. Trust me I am not knocking a Dad’s love, it is strong too. As I continue to read the book, Bloom, I feel the love each person in the book feels. It also has me reflecting on my pregnancy and delivery with Clay. She didn’t know Nella was going to have Down syndrome, I knew there was a 99.9% chance that Clay was going to have Down syndrome. So I was prepared, not that being prepared doesn’t have fears too. The author had an amazing support team. Reading about all her support of family and friends is so sweet. However, I wouldn’t trade my peaceful delivery of just Heath and I for anything. We were living in Colorado and I went into labor a week early. Mom, Jesse, and my mother in law didn’t show up until a few days later. The three days in the hospital with just the three of us was perfect to me. Jesse was in Georgia with family for Christmas and was being spoiled. So everyone was in the right place. As I continue to read I have reflected on my pregnancy and my emotions. It was a roller coaster. The harmony test came back that there was a 99.9% chance of Clay having Down syndrome. However, the ultra sound didn’t show any signs of Down syndrome. We prayed before we went into the ultrasound, Heath, Jesse, and I prayed that there would not be any signs of Down syndrome. God answered. Not one. The ultrasound technician told us there were no signs. We cried happy tears. I feel terrible saying that now! We did not know what a blessing Clay would be. So we thanked God for answering prayers, then walked in the arrogant doctor and she was nasty to the ultrasound tech. Asked her if she got her degree at Devry. This doctor was full of herself and didn’t give off a good vibe! She took over the ultrasound and even she couldn’t find one sign of Down syndrome. She then told us that our son did have Down syndrome, because the Harmony test wasn’t wrong. So we walked out of there confused. Did he have Down syndrome or not? Only time would tell.

God knows better than me. He knew I would love Clay with all my being. I am so glad God gave me both my boys. I wouldn’t change one chromosome.

Love is amazing!!

Understanding Feelings

I love to read and I just started reading the book, Bloom. Bloom is an inspiring and heartfelt memoir that celebrates the beauty found in the unexpected, the strength of a mother’s love, and, ultimately, the amazing power of perspective.

I am only in the first chapter. Even though our experience with the diagnosis was completely different I can relate to her experience. She had a birth diagnosis and I had a pregnancy diagnosis. She was scared as all moms are when they hear the diagnosis. My fears were if other people would love and accept Clay, I knew I would. We didn’t announce Clay’s diagnosis until after he was born. I told a few people that I knew would pray with me. I had them pray for a healthy baby and God answered. Clay has been healthy. I too cried like this Mom. I knew I could and would love my baby no matter what, but could and would everyone else. I cried even harder few days after Clay was born when I read a text my husband received asking if Clay had my hand. This person was worried that Clay had my birth defect of one hand being smaller than the other. My hand doesn’t bother me, why does it someone else? This made my fear of people accepting him grow even bigger!! This person didn’t even know of his diagnosis yet of Down syndrome, how would they ever accept his Down syndrome diagnosis if they were worried about something as simple as one hand being smaller than the other!! My hand never held me back, why were they so concerned with something so stupid. This is why fear creeped in. Sometimes the unknown or differences freak people out. Chill people…..it is only a hand that is smaller than the so called normal hand and it is only one extra chromosome. So far, thank God, no one else has said anything stupid to me about Clay or my hand. God has put a lot of wonderful accepting people in our path.

I can also relate to always wanting to be a mom. As a little girl I carried my baby doll everywhere and even took a stroller shopping with me to push her in. I also had a Barbie doll obsession. When my sister had kids I spoiled them as much as I could.

The next book I read recently is The Memory Keepers Daughter.

This is a fictional story based in the 1960’s. I too cried in it!! A woman has twins and one has Down syndrome. The father is a doctor and they used gas back then on the mom’s. He told the nurse to take the baby to an institution. He tells his wife the baby died. The nurse goes to the institution, but can’t leave her. Great book and heartbreaking. However, I couldn’t relate to this man and what he did, I did fall in love with the nurse.

Again, I love to read. I read a little bit of everything, except I don’t do scary Stephen King, but almost everything else. I did search out this books, because of the Down syndrome themes. Down syndrome is a part of our life, but a small part. I don’t see Down syndrome when I look at Clay. I see a sweet, loving, wild, into everything, smart, amazing little boy that loves to swim, and play outside. Down syndrome doesn’t dictate our lives, but I do advocate a lot to let others see how amazing and smart Clay is. I want to change the way people thinks about Down syndrome or any difference. A couple of weeks ago at Chick Fil A playground a man started talking to me about Clay. His brother has a son with Down syndrome and he is in his twenties. This man was so nice and enjoyed talking to Clay and was amazed how well Clay is doing. Again, I am so grateful for all the wonderful people God has placed in my path. I know my day is coming when I meet a jerk and they say something mean. Maybe I will show Mercy and Grace, but I might not!! I have read others parents experiences and it breaks my heart!

Seriously? That face, I love so much!

Differences is a good thing, not a bad thing! If we were all just a like the world would be a boring place!

Piggybacking

My last blog was on Easter about going to a random church we picked. We went back this Sunday. The lady that helped us get Clay into children’s church on Easter spoke to Clay as soon as we went to register. I walked Clay back and he started playing right off. As I walked into the sanctuary a young man with Down syndrome in about his twenties handed me my bulletin. Tears welled up in my eyes. I looked around wondering who his parents were. As I find Jesse and Heath a man is shaking their hands. I sit down and ask Heath if he noticed the young man with Down syndrome giving out the bulletins. He didn’t. The man that was shaking their hands said “that is my son with Downs’ handing out bulletins.” We said we have a three year old with Down syndrome, but I don’t think he heard us, someone else came and cut in. Also, the service started, we didn’t get to talk to him more. I don’t know why I feel such a connection when I see someone else with Down syndrome, but I do. It is like “hey, it is part of my family tribe.” A deep connection that I cannot explain. This church has welcomed Clay with open arms and both times he has been in the children’s services they have said he has done great. The kids also go into a kids sanctuary and worship. I think I have found where I want to go, I cannot speak for everyone else, but I want to go back.

Praying everyone has a wonderful Sunday and I have an unspoken prayer request. Please pray. Thanks everyone.

Don’t Worry

I hope everyone had a wonderful Easter. Since moving to Ellijay we haven’t found a church. We have went to several that we like, but I walk away saying ” I need to come back to know for sure.” Then I don’t go back. When we moved to Colorado we found one on the first visit to a church. I think I am looking for that “Yes, this is it!” Since Heath was on call and has to be close to work, we drove to Chatsworth and picked a church. We picked the Rock Bridge Church. We checked Clay into the children’s church for three year olds. A lady helped me check him in. I told her he is special needs. She didn’t bat an eye. I have read other people’s stories about churches turning their child away or putting them in the baby group. She just kept on typing. Then she walked us to the class. I told her I was going to stay awhile. Clay started playing right off and having fun just like the other kids. I told the ladies a few things to watch out for. If they gave him a snack that he is bad to over stuff his mouth and that he can talk, but also uses signs. The one lady knew a few signs. I told Clay bye and went out. Checked on him a few minutes later and about thirty minutes later. The lady then told me his ID number would pop up on the screen if they had a problem. He stayed an hour and had fun. I learned a few things in the sermon that I didn’t know. We chose well!!

Every Easter I do a bible based scavenger hunt for Jesse. I almost forgot to do it, but Jesse reminded me. I don’t do Easter bunny, but do baskets from us. We dyed eggs, but never found a egg hunt to go to. We went out to eat at a Mexican Restaurant after church. The lady that sat our chips down said “oh my goodness!! He is so cute! Does he have Down syndrome?” I honestly was busy trying to get Clay sat down and had to ask “what?” She repeated and I said “yes.” She then told me about he son that is eleven and has Down syndrome.

I feel so blessed to be able to say we haven’t ran into any negativity when it comes to Clay. He has always been welcomed with open arms, and I am so thankful.

I hope everyone has had a wonderful Easter. He is alive!! The tomb is empty. That third day is wonderful.