The Day I Saw Fruit From Our Labor

This weekend our church held a Sunday School Program to showcase everything the children have learned throughout the year. Both of our kids had practice their roles many times at home and were so excited. They got dressed in their Sunday best and ran to the children's center that morning. I gave them a kiss and told them that they would do great. Then, I went to get a seat.

I was not prepared for what happened next.

My little girl's class was first. She stood up, smiled big, and with great confidence shouted her line. I was so proud. To see her stand up in front of a crowd next to other children and speak with emotion is huge! Two years ago she wouldn't tolerate even being around two other people and struggled with expression. It was a very exciting.

Then, my son's class lined up. I noticed all the other kids were  looking at my son as he STARTED THE PRAYER. Tears rolled down my face as I saw him do this with great eye contact and expression. It was at this moment that I fully realized that God answered my prayer from five years ago.

I remember that night so vividly. Crying ugly tears and asking God to please restore my child's health and his voice. I remember how hard it was sitting through evaluations and listening to the results. I remember everyday of therapy then and now.

Sometimes you get so caught up in routines that you do not realize the amount of progress since "that day". This weekend was a great reminder to me of how far we have come on this journey. It blows my mind how God can take a little boy who lost his speech to five years later standing in front of his program leading the prayer and a little girl who struggled to connect to two years later standing with her class to do a program in front of a crowd. God is amazing!

I am so thankful. Thankful to God and all of those he has used to do wonderful works in my children.  It is nice to see all the fruits from the labor.

What I Thought I Knew

Before my children, I was a teacher for eight years. I sat in IEP ( Individualized Education Plan) meetings discussing modifications and accommodations the child would have. I followed the plan to a "t". I looked at an IEP plan as helping "level" the field for kids with special needs. I documented and checked off all the things I was doing like extending time, giving fewer choices, reading tests, and moving their seat closer. I never really understood the impact and importance of an IEP for the student and the family until I sat on the other side of the table years later for my own children. I then felt the emotion and frustration a parent feels fighting for their child's needs to be met. I am thankful for the teachers and therapist that show empathy and really want to help. When I do go back to teaching, I will not be the same. I am thankful that my children have opened my eyes to the other side.

You Are Welcome To Make Accommodations At Home

Before the New Year, the school held an IEP meeting for my son. All testing had been turned in from our private therapy facility and extra testing had been done through the schools. They started the meeting by telling me that even though he required four hours of public therapy, through the schools they would only provide what was academically necessary. So, instead of two hours of speech and two hours of occupational therapy, he would receive 45 minutes of speech a week. I was told it wasn't academically necessary for him to receive any OT. When I argued and said, "But, he can't button and zip his pants and has trouble dressing himself when he uses the restroom." They told me to make accommodations at home, so that, this wouldn't be a problem at school. The OT told me,"Send him to school in elastic pants, so it won't be a problem. Many students wear them."

So, my son started receiving speech services after the holiday, and I started making accommodations at home. Everyday I send him to school in clothes that will not cause a disruption, and he will he successful in until Wednesday. Wednesday temperatures were below zero. I had to send him to school in a snowsuit. Because he couldn't take it off quickly, he got a tardy. Then, he caused his class to be late at dismissal because the teacher had to put it back on him. When I went to pick him up, his teacher told me that if I send him to school in clothing that he can't manage, I need to come in to help him take it off and put it on because she has 24 students and can't help him.

I understand that teachers are busy. I do. I taught for eight years. This to me should be a red flag that yes it is academically necessary to give this kid occupational therapy. What if, I wasn't available to help my son? Would he not receive the help he needs? The system really frustrates me, but I know the system well. I know for any change to occur I must document everything. Still I am not sure if that will even be enough. It's hard when your kid is one of the ones that falls in the cracks ( not low enough to receive services but still needs help). I am just thankful that I am a mom that can accommadate and be there.

Starting Over In a New State

Recently, we moved to a different state and started the process to qualify for therapy again. One of the hardest things about moving is starting this process over. Each state has their own testing and requirements. The fastest way to do this is through private therapy. Once a new doctor has put in a script, you pay fees for new evaluations. This process can be costly. For example, it was $600 for each child to receive a ST, PT, and OT evaluation. Since we have not reached our deductable, this was an expense out of pocket. Once we found out that we did qualify, we also found out that insurance was not going to really help us (for the 7 hours of therapy at $200 an hour). We then turned to the schools to help our children with therapy. Testing through the schools took three months. They took the evaluations from private therapy, but added their own testing as well. Then, it was followed by the IEP process before we could start. We moved here mid-August and my kids are starting therapy in the new year. I am excited that it is finally happening, but exhausted by the whole process. The schools are also only giving my children speech. Where as, in private they qualified for speech and occupational therapy. Right now, we are going to take what we can get and call it a win.

Forgiving Others

The weather was amazing today, so I decided to take my kids to the park. After launching rockets with our rocket launcher, the kids wanted to go play on the playground. I watched both of them run and climb up the rock wall to the top of the tower. They then crossed a bridge and went down the slide. As they began to climb up the playground again, another family joined us. The other mom was pushing a stroller with a baby and toddler while her older three boys walked beside her (One of her boys was close to my son's age. The other two were a few years older). The mom then sat on the bench and the kids ran to play as she called someone on her phone.

My son was ecstatic that "friends" we're there. He ran over to them and started talking to them about playing a game. As I helped my other child up a ladder, I heard the oldest boy ask my son, "What's wrong with the way you talk? Do you want to marry a boy or something?" My son said, "Nothing's wrong." Then started moving closer to them. The boys started running away from him. My son thought it was a game of chase. The older one said, "Stay away." My son continued thinking it was a game and went after them.

My momma heart was so upset and angry. I told my kids it was time for dinner, and we had to go. My son waved bye to the boys as we left. His innocence made it even harder. In the car, my son asked why I was mad, and if he was in trouble. I told him I was mad at the boys for being mean. I told him he wasn't in trouble, and I was proud of him for making friends (socialization/ friend making has been something we have worked on). I left it at that.

Later, as we prayed, my son prayed for his new friends to be nice to people. Then he thanked God for friends.

Tonight as I sit here, I know I have to forgive these boys. They are just children. The little ones were following the example of the older one. The older one has learned a lack of compassion and acceptance from somewhere. It might be from a lack of parenting since mom was on the phone, or observation from others in this world. This child has no idea how thankful I am that my child has a voice. He doesn't know how I cried and prayed for my child to speak again once he lost his voice. He has no idea how many therapy hours we have been through to get where we are today. And even if he did, he is a child and most likely wouldn't fully understand the harm of his words. I wish at that moment I wouldn't have been so angry. I wish I could have talk to him about love and compassion. I hope someone in his life does. 

But for tonight, I am thankful that my child did not understand what this child was saying and doing. I am thankful that my son thought it was just a game. I am thankful for his innocence. At the same time, I worry. I worry about the day when he does understand when others are mean to him. I know that day will break my heart even more. 

But tonight, I let go. I forgive.

Down Syndrome, A Blessing

Before I was born, my grandmother gave birth to an adorable brown eyed boy. She named him, George, after his father. At one of his first check ups the doctor confirmed that baby Georgie had Down Syndrome. The doctor gave her options and even asked her if she wanted to keep the baby. Even though she knew the road ahead would not be easy, she wanted to take it.

 My grandmother to this day would tell you that Georgie is one of the best things that ever happen to her. He taught her that life doesn't have to be perfect and that there is always a reason to celebrate. When my grandmother was left a widow, Georgie gave her reason to keep going and has been her companion.

Georgie not only has blessed my grandmother's life but has affected everyone in our family. My mom developed a love for special needs children and became a special needs teacher. All of Georgie's nieces and nephews have developed great compassion, love, and understanding for the special needs community.

Our family would not be the same without Georgie. We are so thankful that God blessed us with him and gave us reasons to celebrate each day.

Sensory Processing Awareness

I remember when I started noticing things going on with my child. When other people noticed too, I was the queen of excuses. I loved saying he was shy when he would crawl into a quiet space on the playground to hide. I wanted to believe others when they said it was just a phase, but something in my heart knew that we needed help.

The therapist helped me work through my feelings and taught me how I could best help my child. A big part of helping my child was education. Reading about Sensory Processing Disorder and becoming an expert has helped me advocate for my child and get his needs met.
This month is Sensory Processing Awareness month. Here are some basics about the disorder:

All kids with Autism have Sensory Processing Disorder, but not all kids with SPD have Autism; some might have anxiety, ADD/ADHD, or behavior disorders. SPD can cause developmental delays. Children with SPD when overstimulated will respond with flight (run away), fright (freeze), or fight (hit, bite, kick, yell). They are not bad or misbehaving children. They are trying to deal with everything going on around them. Children with SPD do not grow out of it. It is not a phase, but with therapy and intervention, children can learn coping strategies and get help on how their body responds to taking in sensory information.

Some signs of Sensory Processing Disorder include: having trouble focusing, complaining about light or shielding eyes, chewing on everything or mouthing things, handwriting struggles or poor fine motor skills, sitting in W position, moving clumsily or coordination/gross motor difficulties, hearing everything too loud or wanting to play sound too loud, clothing hurts or wants clothes tight, eating difficulties ( gags on different textures or picky eater), hearing difficulties, and touching others too hard or avoiding touch.

A person with SPD will not show all of these signs. There is a large spectrum of this disorder. It can look different on different people. Some are sensory seekers, others are sensory avoiders, and some are both.

If you know in your heart something is wrong, I encourage you to talk to your doctor or occupational therapist. The sooner you get help, the faster your child can learn how to self regulate their system.