"I am so dumb"....and The Emotional Meltdown Challenge

                                                       Communication is HARD!!!! Pre-teen stage is HARD!!! But especially with a son with autism. FAIR WARNING This is going to be a brutally honest post about the challenge of communication when you have a child with autism. The last few days have been rough both on him and me. The combination of the preteen personality and hormones flaring up and the bluntness of a child with autism is overwhelming. The frustration for both of us has arrived. This is a brand-new stage and to be honest, it scares me. I have no idea what I am doing. I have no idea what to correct and what to give grace to. I have no idea sometimes where the dramatic responses are coming from suddenly.  Communication and emotional processing are difficult for children and preteens with autism, and it was never so evident than the sudden arrival of this new stage. Boy am I not prepared for this!

                           David and I have always had a close relationship and I pray that will always be the case. Right now, it is becoming hard on this mom’s heart when he feels overwhelmed and doesn’t know how to express himself without having a complete meltdown. When I say meltdown, I mean he has started to shut down when things get tough. For instance, we were playing monopoly together and we were having a fun time together. Everything was going great but then it was my turn to pick a community chest card. On the card it said I had to pay $50 but he did not understand what I said. He kept insisting I had to pay more. I tried to explain why I did not have to and how the rules were different than he was saying and then he realized he was wrong he immediately went to melt down mode. Melt down mode has started to go straight to, "I am just a loser. I am so dumb. There is no purpose in playing if I can’t understand so I am just going to never play again. I argued about something for absolutely no reason. So dumb." When I tell him he can choose his attitude he says, "well I choose to never play again."  Then he proceeds to hit himself in the head repeatedly. He says it's his response to him feeling like he is dumb. Now normally, parents can tell their children “You can choose your attitude" but with David I have learned very quickly that it doesn’t work. He will take it literally and always choose the negative thinking that is ok when he is in the middle of the overwhelmed moment. 

                      Sometimes I wish that I could just go right into his brain and see all that he is thinking and be able to be a perfect communicator....but isn’t that every parents wish? I wish it was that easy. But then if I were able to do that how would I continue to learn how to trust the Lord to help me be the best mom to David? He is the great Communicator and the perfect Father and knows every thought inside of David's head and he will guide me and show me how to respond in each situation. This journey can be hard. When you have a child who is high functioning, and it is not obvious to many people that he is on the spectrum it can be even more difficult to find people who understand. It also can be really frustrating to the kid too because all they are trying to do is communicate in a way they know how and they don’t understand when it comes across as rude. They don’t know why they misunderstand people, and they don’t understand why they are getting in trouble for what they say. So, in those moments is when grace is needed. Patience is needed. A soft answer and slow to respond attitude is needed. Prayer is needed to know exactly whether it is just plain rude or them not understanding how to communicate in a healthy way. That is where it gets hard. It is then when I make those mistakes that I have to give grace to myself and let him know that Mom is learning just like him. It is then that I see the calmness in him return. 

More on how to calm them and what I have learned about what works for David....it may help you too!  :)

 

                   

                           

                               

Three Years of this New Normal- COVID

                 

   Well, it has been about 3 years since I have blogged. I did not realize it was that long until I opened it up and realized I had not posted since 2019! So many things have happened in the last few years. I think it has also been that life has just been plain crazy in this journey! However, I would like to start again continuing to share David's story. My hearts motivation in sharing is to truly help others who may be struggling with the same journey and feel alone, for those who know David and would just like to know more about his struggles as he gets older and for me as his mom. Journaling quite frankly helps me process all the changes, challenges and blessings that come in the journey. So, I am going to go back a few years and see if I can share some of those things with you.... hopefully, I can remember! LOL! Here it goes........

             As I think back on the past three years, I can say that it has come with its difficulties. Certainly, we can also say that at least the last 2 years have been extremely challenging f. all of us. So many changes. So much stress. For David it was a whole new road he had never traveled before. Right before covid hit David had just been finishing the end of First Grade. He was in his routine. Going to school on the bus every day, coming home at the end of the day and having ABA Therapy on Mondays and Fridays and then karate three times a week as well. He had church and home schedule as well. All was normal in his world. And then......COVID! Suddenly EVERYTHING changed and was affected by this new sickness that all of us were not familiar with. Suddenly everyone had to stay inside or if you did go somewhere you had to wear masks everywhere and social distance and not shake hands or hug or do any of the regular things that we were so accustomed to doing.

          Overall, David did okay but not be able to see his teachers or therapists or do karate in person all of a sudden was not fun!  He was not happy about everything suddenly changing to Zoom. He wanted to be able to have ABA in person. He wanted to have karate in person. Those were the most challenging parts. He liked having school through Zoom, but he loved his ABA therapist, and he LOVES karate and those things he felt he wanted and needed to do in person. Yet it was out of anyone's control. After a while as some families may have started doing with their kids as they got weary of the whole thing was whenever I told him that we could not do something or go somewhere or something was canceled due to COVID I would say, "Well, unfortunately the party was canceled because......"  and then David would say...."dumb COVID". He would get so tired of everything changing and not being able to count on things happening because it never was 100% sure. I guess on a positive note it did help him with handling changes in life but at times it was just too much!       

        I tried to make things as normal as possible whenever there was opportunity and one of those things, I insisted on making great was his birthday. It was his eighth birthday, and everything was closed, and we could not have a birthday party at all with his friends and I just wanted to make a great memory for him. Some of you who may be reading this I have to say thank you because you contributed to this amazing day! I ended up decorating our kitchen and went all out with Mario themed decorations and put out all his presents so that when he woke up in the morning, he would wake up to this amazing surprise to celebrate his birthday! I had friends send him birthday cards in the mail that I had laid out on the tables, and I had little party favors for him to keep and we ordered him a Mario birthday cake. I also called his sitter who was supposed to do a Zoom time with him and had her get on the Zoom but outside of our house. Then she rang the doorbell and I told David he needed to answer the door. He said, "But Miss Olivia is going to be on any second". I said, "Well answer the door really quick!"  Then she was standing at the door! He freaked out with excitement! It was awesome! I just wanted to give him something extra to have and have at least one person come. It was my favorite birthday party he has ever had! It was such a fun time and I loved being able to forget about COVID and give him some "normal". That is all that I wanted for him in that moment.

           There were also really difficult times of trying to explain the impact of COVID on families who lost loved ones or those were really sick with COVID.  During that time we had not had anyone in our life that was impacted greatly until September 2021. On September 9, 2021 my brother in law Tony ...... Uncle Tony to David....unfortunately passed away after having COVID. David had a sweet response to it though. It was interesting to see how he processed it.  He was very very sad and cried when I told him. He also understood that it was okay to cry and that Mommy was crying because she was sad when she talked about him and about Aunt Patty being sad. And then one day out of the blue I was sitting down with him to play Nintendo on his Switch. I noticed he had a meme that said Tony.  I asked him why his meme was named Tony.  He said, "well, its because I wanted to remember Uncle Tony because I love and miss him.  I dont know what his favorite color is so I made him red. I wanted to make it for Aunt Patty as well because we love her."  He also wore the shirt that Tony bought him to Disney World when we were there two months ago.  He made a card for my sister Patty when I went down to Florida for Tony's memorial service specifically from a picture that he had seen of them on the beach.  This is how my son processes things. He doesn't talk about it sometimes.  He shows his feelings. In future posts I will share more about that but I remember at Tony's memorial service in Virginia he said he was crying because he saw Aunt Patty crying and he was just so sad for her.  But he was trying not to cry. He has a sensitive heart and I love him so much for that. We still talk about Uncle Tony a lot and pray for my sister and niece and nephew. If you are reading this please pray for them as well. They really need it. 

          I just wanted to share David's love for his Uncle Tony and how COVID has impacted David and how he has processed these last few years of the unknown. I know it has been difficult on thousands of people but I know on our kids who have special needs it can be hard to handle all the unknown.  And that's ok.  I wouldn't change them one bit!  It's just my job as his Mom to help him navigate through the changes and sometimes it can be easy and sometimes it's not but Jesus is always on the road with us as we both learn how to do it day by day.  More on big changes to come.......

    

      

 

A Fellow Autism Mom's Encouragement for the Journey

                                      Today I was watching an interview with Kody Lee's Mom. He was the winner of America's Got Talent. He was born blind and also has autism yet the Lord has given him an AMAZING gift of communicating through his love for music. He has such great talent! No limits! As I was watching the interview I could not help but cry as I heard this mother's story of what it was like to walk the journey of having a child with special needs.....one who could not see and had autism on top of that. She spoke about the challenge of being in denial that he was blind until the doctors diagnosed him. Then she allowed herself to accept his diagnosis and got him all the services available to him....then he was diagnosed with Autism. That hit her like a ton of bricks! She was like most Moms who face this diagnosis. What does this mean? Will my child be independent? Will my child be able to communicate? Will my child be okay? Will they be stuck in their own world forever? How am I ever going to do this? And the ever difficult question....why would God think that I would be the perfect parent for my child? What do I have to give them? All these  questions I have asked. All of them. I don't ask the last question anymore as I now see how the Lord is using this journey to stretch me and to minister to other Moms who are walking it. I now see through my son's eyes when he has a victory. When he struggles he comes to me. He looks for me. He knows I am there. He knows I point him to Jesus as we pray together to help him be able to be brave through those challenges. I see my highest calling in my son each day.
                               However, there are times....and they have been more frequent lately....when I ask myself if I have done enough? Have I held David back in those times of exhaustion when it has been just too hard? Have I held him back from success when I have not pushed him in moments when I should have? As I was listening to this sweet Mom speak about how she just makes her son do everything and pushes him more and more I was fighting back the lie that says "I have failed". "It is too late."  "I am not that strong"  "It's too hard!" Parents who have children with special needs are the only ones who would know for sure those struggles. I have a feeling that if I were to sit down with this sweet lady and share all that I am sharing with you she would tell me that these are lies that are directly from the enemy!!!  I know that. I just battle the part that goes to my heart as I watch my son....as I see the differences in my son in comparison to other children his age. That is when I have to choose to give those thoughts to the Lord and keep my mind focused on His truth and what His Word says! He is my strength! I CAN do all things through HIS strength! It is NEVER too late!! I have NOT failed!!! The Lord has a HUGE plan for David! He will perfect it!
                            Having a child who has autism feels like a roller coaster at times in so many ways. Each roller coaster is different for each parent and family because each child's journey and needs are different. There have been so many highs and this is an exciting time for me and David. This is an exciting time because I am finally able to get out of my fear and push David farther than he desires. I have been able to see him have victory over so many foods he has tried.....about 7 actually!!!!  What a miracle I thought would NEVER happen!!!  At the same time this is an emotional time too. Watching this interview brought out the emotions of what this journey has been like. But at the same time I felt such motivation as well to keep going. To keep fighting the fear. To keep persevering. To keep pushing. To keep cheering him on!!! To keep working as a team and to keep pointing David to Jesus and teaching him the Jesus gives him the ability to be brave when he is afraid. To keep praising the Lord for each victory as well as the knowledge of His faithfulness to walk us through each challenge. He is, has been and will continue to be faithful to this Mom who leans on Jesus each day to give all that she needs as she parents her son for His glory!

Coin Contract Bravery

                                    This was a fantastic first week of helping David learn to be able to eat more foods. There were lots of ups and a few downs but I am soooo very grateful for the triumphs. This gave me such HOPE!!!!  My boy will be able to conquer some of his eating issues and fears. David has been in some type of therapy for eating since he was 16 months old. Now 7 years later we are still in the battle but for the first time in seven years I feel like I can breath. I can let go of the fear that David will not eat more foods. For the last 7 years he has eaten only 1 vegetable.... green beans. His diet for the last 4 years has been green beans, scalloped potatoes, a specific chicken noodle, spaghetti with no meat, yogurt, apple sauce, gold fish and animal crackers, peanut butter sandwhich (that actually was his first sandwich that we JUST got him to eat this last summer). He did not eat any of his birthday cakes until his 6th birthday and now the big thing he loves is chocolate cake and ice cream.  :)  We have tried several different techniques in the last year or two that have not been extremely successful. However, we have finally found something that is motivating him and helping him be brave.
                                  David has been in ABA (Applied Behavioral Analysis) Therapy for the last 2 years. He has been able to conquer so many things in the last 2 years. Now, we are working on conquering the sensory food mountain! I believe we will conquer it! David and I talk a lot about being brave. He loves to talk about being brave and he loves being brave. I always tell him though that yes. He is brave. But it is Jesus who helps him be brave. So we pray each morning and thank Jesus for helping him be brave to try new things. So now whenever we talk about eating he usually says, "are we going to practice being brave with food today Mom". I love it! I have a sign in our kitchen that I made for him that says I AM BRAVE!   

     
                                  I would like to share with you what we are doing with David to help him. We are using a kind of token economy system. Each token represents a bit or even bites of food depending on degree of difficulty. At the beginning of the week we sit down with David and set up his goals for the week WITH him. We let him decide what reward he would like to work towards. We then tell him how many tokens he needs to earn in order to get each reward. At the end of the week he can trade his tokens in to us for the prize listed on what we call The Coin Contract. He has to sign the contract as well. 

            Once we establish what the rewards will be and he has signed the contract we then can start. The goal is to get him to taste and eat it. Then we decide the size of the bite he has to eat. Then we decide how many tokens he gets for each bite based on difficulty. At the beginning of the meal we write out on a sheet the food he is going to try, the amount of bites he has to eat and how many coins he gets for that bite. It also has circles of different sizes that represent the sizes of the bites that he would need to eat. Each meal can be different. Each food can be different. This can also encourage the child to eat bigger bites if the food is tolerable the first time. That gives room to increase the amount of tokens to give them. Then at the bottom of the page we say how many bites were eaten and how many tokens were earned as well as any comments on behavior, reaction to food etc. It has made it so much less stressful for me as well. It makes it so much more fun even with the challenge of those foods that have not been tolerable. This week he has tried and eaten hot dogs (HIS VERY FIRST MEAT HE HAS EVER EATEN), a few different types of chicken, apples, jelly candy and hotdog bun. The hotdog bun and one type of chicken made him gag but the others accepted pretty well. This week we will be working on increasing the amount of bites and increasing the token challenge.
                         

              So this week we continue the journey!  I know it will not always be as easy as this week but I am thankful to the Lord that He has given us this tool to help us and has given me courage to keep going and know that no matter what we can push through one bite at a time. Thank you Jesus for this gift!  :)

Bring on the Food, Bring on the Praise

        Alright people! I need your prayers! I am having anxiety just typing this. Our son has autism and has had severe eating issues since infancy. It has been an exhausting journey. He was in about 3 years of feesing therapy and exhaustion hit a climax. For the past year I have not had the energy to attack this. I have not wanted to. It has seemed too much emotionally and physically. But even though I really dont want to face and fight through the battle it is time to attack and help our son with his food issues again. He cannot stay with the same foods for the rest of his life. I need prayer for courage to keep going, for strength and stamina, for David to be able to handle more foods, for wisdom as his ABA therapist and I try to be creative in making this as positive as possible for David and I. I HAVE to get over the fear and just do it!!! Please pray for me as I fight for our son. Pray for the Holy Spirit to move in all areas and that the Lord would be glorified as we give HIM praise for each "small" victory which we all know are really HUGE!!! Thank you soooo much!!!! I will be writing a lot more frequently to journal out this journey. Im looking forward to sharing it all with you. The good and bad! May He be glorified!

Oh Strength For the Journey How Much You Are Needed

             It has been awhile since I have written but I have something on my mind that I am struggling with. David continues to have major difficulties with eating new foods. He was in feeding therapy for a few years and then we hit a wall. Nothing was motivating him. He started not responding to therapy and it was time to take a rest. That was about a year or so ago. We have tried and tried to get him to add new foods on our own to no avail. He has never had more than one morsel of meat that he tried once, he's never had a sandwich, he's never had a fruit, he's never had anything other than a specific chicken noodles, green beans, strawberry yogurt, apple sauce, animal crackers, gold fish and nilla wafers. People mean well when they keep asking me whether he will eat this or that. It is hard when people who also mean well give me advice on what to try....I am speaking specifically to those who are not in the battle and not in a professional position. Yet at the same time this journey requires and has taught me to show grace in those moments.

              I'm just being real people. I have been struggling so much inside and battling guilt that I know shouldn't be there. Did I do enough?  Am I doing enough? What could I have done more? Yet at the same time I have been sooo exhausted for the battle. To be extremely honest I am so afraid to go down this road again. I don't want to. I don't know if I have the energy to go through the temper tantrums and crying and screaming. It would be so much easier to not go down this road. But my child's future success is far more valuable than any moment of tears and frustration and sadness from his Mama. Now that he is older it is going to be harder in different ways. He is definitely stubborn and has a mind of his own.  :)  My prayer is for a major breakthrough. I need a major breakthrough.

              My biggest fear is the effect it will have on him when he starts going to kindergarten and through elementary school. I don't want him to be bullied because of it. Kids can be so cruel and that part scares me. Whenever he is at birthday parties he never wants to eat anything given.  He doesn't like cake. He doesn't like candy. He doesn't like anything else that is normally served at a kids birthday party. Now, the positive in all this is that David doesn't like anything sweet besides plain strawberry ice cream. At least we don't have that battle.  lol  I know most parents wish they were in that same situation. lol  I would give anything to have that battle. I would give anything to see him eat a piece of chocolate cake or candy. I would give anything to see the boy eat a sandwich or meat or another vegetable for that matter.

              I think my theme verse for the battle is going to be:

                            Galatians 6:9

         "Do not grow weary in well doing for in due season you will reap a harvest if you faint not."

 

As well as:

                            Isaiah 26:3

          "You will keep him in perfect peace whose mind is stayed on You be cause he trusts in You."

   

So, with every moment, every day, every mealtime, every food and through every tear, temper tantrum and frustration I will lean on the Lord for strength and cling to His promises. He has always been and will forever be faithful to keep them.

                 When the Lord puts us on your mind I would love it if you would pray for us. Thank you very much!

 

 

            



Oh Taste and See That The Lord is Good!

"Just had an amazing time that was truly planned by The Lord. Not only did I get to meet and talk with my new doc but The Lord answered prayer by letting me meet a sweet lady who went beyond the call of duty to direct me to open doors of opportunity for David. I don't know where it will lead but thankful to be reminded yet again that He hears and knows our needs and desires and will lead and direct in His time to His perfect plan and will." Facebook post on June 24, 2015

            Wow! As I read that two years later I am in awe of His faithfulness and goodness to us! So many things have transpired from that meeting. I am beyond grateful for my sweet friend who brought me there that night. Little did I know it was the beginning of an awesome journey.
              This lady worked for a local provider of services for those that are in need of assistance for children or adults with special needs of any kind. They provide case workers to help families and individuals  through the process of applying for services as well as continuing to keep it. I had tried to apply for what they call an EDCD waiver all on my own and it was a nightmare!  I knew David was fully eligible but I didn't know how to apply for it and tried to do it all on my own. He didn't have a caseworker to help at the time because I didn't know it was available to David. Sooooo frustrating!  So at that time I just gave up. Then about 2 years later I started to pray about it again because Davids therapies were getting too expensive even with insurance and we started to see that he was in need of a more expensive therapy called ABA. I just didn't want to go through the same exhausting ordeal. But I prayed.
                   So about 6 months later I went to this meeting where I met this lady named Ruby. She was amazing! She took 30 minutes and listened and then gave me the number to the president of the agency. I called him the next morning and by the afternoon David had a caseworker! Just like that!  She has been a God send! When we met we decided that we were going to take our time in preparing for the application process for the waiver and it took us 6 months of meeting once a month and researching in between. When you apply for the waiver a nurse comes from the health department and you have 15 min to convince this person you have never met that your child needs the services that the waiver provides. It is nerve racking! I prayed and prayed and prayed. The day of the meeting came and it did not go well. I thought for sure he was denied but I just surrendered and prayed. I knew the Lord knew Davids needs and He would provide in His timing. Two weeks later we were notified that the LORD did allow us to be approved!!!!!  That was in August 2016 and it has been TRULY LIFECHANGING!!!!!!
                 David has had ABA therapy 3x a week as well as speech therapy one day a week. When he started ABA in October  all he would do was cry when we tried to put him on the potty at 4.5 years old. Now he is 95% potty trained!!!!!!!  PTL!!!!! He wears underwear almost everywhere and soon won't need to have pull ups at all!!!!!  I think his Dad and I will celebrate when that happens!!! His speech has come so far and he has just blossomed! His teachers have noticed a huge change at school as well. He still struggles with eating but has made progress in that as well.  He is starting to say the funniest things and his personality is coming out so much more! He has also said so many sweet things to his friends that we have witnessed and it has been so great! I'm sooooooo proud of him!!!!
                    We have also been able to hire 3 ladies that have spent time with him and worked with him while I work during the day. The waiver provides that as well. We have really been blessed by them and the changes in David are also due to their impact as well. There is very little time that David does not get interaction of some kind and it has made a huge difference! Soooo very grateful!
                Oh how good the Lord has been to us! We thank Him and look forward to all that He has in store for David and our family!

"Oh taste and SEE that the Lord is good! Blessed are those who put their trust in Him!"
Psalm 34:8