Seeing Things From a Different Perspecitve

I am a little unnerved about something today. I have a choice to either let it eat away at me that people who should care about my child, don't or I can choose to focus on those who do. Guess what I am choosing to do?

Good thing I went to church this morning. During worship one of the songs had these words: Nothing compares to the riches of Your love. Your love is enough. Amen to that.

Instead of  posting a rant,  I am going to tell you about those that God has brought into our lives and what a difference they make.

First of all Princess has three amazing therapists. The one at school is there for her every day. They talk about things that bother her and how to be a better friend. This therapist, Miss A., also has group sessions with my daughter and her classmates. Additionally the school district pays for a therapist from an outside agency to come every other week to meet with Princess to help her build her friendship skills even more. He also meets with my husband and I twice a month as we learn how to parent this child. Since he sees Princess at school, he is a great liaison between school and home. Finally there is our beloved personal therapist. I cannot say enough about this wonderful lady who helped steer us in the right direction from the very beginning almost 4 years ago. One thing that is so good is that she does play therapy with Princess to draw things out of her. She tells Princess the things that she needs to hear but that she might not like to hear. There have been a few times where I thought for sure that Princess was going to say that she didn’t want to go back to see Miss R. after a particularly rough session. Princess understands that Miss R. cares about her so she always wants to go back to see her the following week.

Princess has two doctors who are amazing as well. Dr. R. has been her pediatrician since she was just a few days old. Before Princess had any dx at all. I was struggling with feeling like a loser mom, this doctor took me aside and told me "You are doing a great job!" I didn't even tell her that I was struggling but she could tell. When our therapist told us that we needed to get the dx of ADHD from our child's doctor, Dr. R. signed paperwork stating such. This little piece of paper was all that we needed to get Princess the 504 that she needed so that the school would stop suspending her. (That 504 is now an IEP which is better but is a story for another day.) The other doctor whose feet I would like to kiss is her pdoc. This woman has worked so hard to get my child stable. She tried many medications but it never felt like Princess was a guinnea pig because my husband and I were part of the decision making process. This doctor also kept us well informed. She is usually available via phone or email. That has been a lifesaver in our moments of crisis. Additionally she was the one who asked us to consider Amantadine, what we now refer to as the wonder drug. She is one of those individuals who never stops learning. She went to a conference where she learned about this new to us drug. Then she presented the idea of trying it to us. I am grateful that she is a lifelong learner.

The school that Princess goes to has been a godsend as well. The structure that they provide for Princess is fabulous. We can tell that the staff- van drivers, PE teacher, classroom teachers, aides etc.- really cares about my child and the other children who attend their school.

Our church gets how difficult it can be to be a part of a worshipping community when you have a child with a disability. They are supportive in ways that go beyond my comprehension.

Then there are our friends. They love on my daughter like nobody's business. They ask me how she is doing, how they can pray and basically love on us. It is reassuring to know that my best friend's daughter is also my child's BFF. This child is truly a gift from God. She knows how to love and support my child even on days when it is hard. My BFF reassured me recently by telling me that she wasn't going anywhere. They are in it for the long haul. I only have a few friends who I can count on but God brought the right ones to me.

Today is a day that I can choose to be negative or I can choose the positive. I choose to reflect on those whom God has brought into our lives rather than those who choose not to be supportive.

Reflections on Thanksgiving Thoughts From a Mom of a Special Needs Kid

I know that many of you have seen or read about people on Facebook posting one thing a day that they are thankful for for the past month or so. Heck maybe even some of you reading this may be thinking of your thankful thought for today or tomorrow. I did not participate in this new ritual this year. I'm not sure exactly why. I do know one of the reasons was that I was afraid I might miss a day. So instead I'd like to tell you about a few things/ people that I am blessed by.

First of all I must thank God for all of the blessings in my life. While that might sound like some Christian lingo. Like you expect from me. Let me explain. Even though this past year, even the past five months have been incredibly difficult for my family, we know that God has been with us every step of the way. He brought a new friend into my life who has been an invaluable resource and encouragement to me. He gave us a new educational advocate. We liked the former one fine but she was just too expensive. Our new advocate is affordable, close by and best of all she has a child like my daughter. She has walked many miles in my shoes. She is able to help my husband and I navigate the rough waters of the school system. As I have mentioned previously, our church has an incredible disabilities ministry. It is through this ministry and the staff and volunteers who run it, that my daughter has been able to find a place where she feels loved and accepted on Sunday mornings. I am eternally grateful to God for this.

Princess has been to no less than six elementary schools in her short education, four in just the past year alone. We have lived in the same house since her birth. We recently were told that she would be at the same school for the remainder of the school year. When I heard that I wanted to shout "Hallelujah!" from the rooftops and mountain tops. This is something to be grateful for indeed.

The school that Princess is currently attending serves kids like her who need more structure with a loving staff. They work on academics and behavior goals with lots of positive reinforcements. At first Princess hated this new school, but in the last few weeks she seems to be complaining less. I'll take that as a sign that she is adjusting. I am grateful for this new school and the staff who work there.

I am thankful for medical professionals who take the time to show my family and I love and patience. There was one time this summer when things were not so nice but the nurses showed Princess grace when she did not deserve it. They understood that her illness was making her make choices that were not pleasant. They could have easily given in and been harsh but instead they took the high road. There was one nurse in particular who shared with Princess that she had a son about her age. She loved on her as if my daughter was her own. We have often wondered if we would ever get a chance to thank her in person. Well you know what? God knew that was a desire of our heart so recently he gave us the chance to do just that.

Princess was at the medical facility where this nurse works getting a cut looked at. After the doctor fixed it up, we headed out to our car. Who was out in front of the building? Why none other than our angel of mercy! Our family got to thank her in person. We were able to tell her how much her kindness meant to us. As she was walking away to get back to work, Princess ran up to her and asked to give her a hug. It brings tears to my eyes just thinking about it.

Even though Princess is a friendly outgoing child, she struggles with maintaining friendships. Those few friends that she does have mean the world to her. I think that they mean more to her than the average child. The friends she does have have to be able to forgive her and show lots of patience. Princess has three friends who are a blessing to her and in turn a blessing to us. One is a friend she doesn't see much but who is very dear nonetheless. Another is a boy that she met at church. They enjoy just hanging out whenever they are able to. The third friend is my best friend's daughter. I am grateful as I see this friendship blossom. They are so good for each other. This friend remembers the not so good times but chooses to focus on the good times that the two friends share. I am told that this friend and her mother pray for our family every morning on the way to school. We are blessed indeed!

I must conclude this list by mentioning my husband, AKA Princess's dad. He has had to shift his thinking about what a dad should teach his daughter. He has has to learn a whole set of acronyms and jargon. He has attended many IEPs. He is the one who is able to redirect Princess when she gets agitated. He loves Princess the way a child should be loved, unconditionally. He did not sign up for being a parent of a child with special needs but he is embracing it. He is choosing to let it make him a better man.  Those of you who do not have a child with special needs may not be aware of this but many dads of these children throw in the towel or are in denial about their child. Princess's dad is not one of these men. For this Princess and I are grateful.

At the end of the day I can choose to focus on the negative, the hardships we have experienced this past year or I can look for God's blessings. I choose to actively seek His blessings on my family's life.

May all of you have a blessed Thanksgiving. Keep looking for God's blessings in your life no matter how big or small.

Calming Sunday Morning Mayhem

One of the difficulties in parenting a high needs child is getting to church on a consistent basis. Princess used to have meltdowns on Sunday mornings or just would have a difficult time overall. I found out this year that her 2nd grade Sunday School teacher just let her crawl around under the table most of the hour. He let her do that rather than having to deal with a non compliant child. After Princess had a major meltdown at church in October, her teacher gave my  phone number to our Disabilities Ministry Director. This wonderful lady worked with me to come up with a plan for Sunday mornings.

We met with another young lady to talk about Princess and to brainstorm creative ways to make Sunday School a more successful place for Princess and her classmates. In the end we decided it was best to have a 1:1 aide (We call her a shadow.) The plan is pretty comprehensive. I will say it's  like having an IEP only better because they gave me everything I asked for and more. We came up with a chart with target behaviors so that Princess could earn stickers for making good choices.  We figured out where she could go to calm down if the morning was just too stimulating for her.  It was decided that I would pack a snack and some water Sunday mornings since Princess can get really hungry or really thirsty. The aide will take my daughter on breaks if she needs them. She even brings gum as an incentive for Princess to earn at the end of the hour if she needs it.

The aide could not attend our meeting so she and I talked at length over the phone before the first Sunday morning launch of our new plan. She was fully on board and wanted to do whatever it took to help Princess navigate the waters of Sunday mornings. I was asked to call her or the young lady in charge of placing the aides in the rooms if we were not going to make it on a given Sunday. I was told I could even call right up to the minute before class was to start. The aide has told me that it was no big deal if we didn't know until the last minute because she would just find another place to serve for that given morning.

I will say that the plan has had a few kinks to work out. Satan did not want us to succeed. (I personally think he is afraid of Princess. He's afraid because he knows that this is a child with a super big heart who loves God so very much.) Once we got the kinks worked out, the ship has sailed very smoothly.

Over time going to church on Sunday mornings has become the norm not the exception. I don't think we have missed a Sunday in about four months.  It's funny because Princess wasn't supposed to know about her aide. We were kind of doing it on the sly but she is so smart that she quickly figured it out. She's a quirky kid because she has this intense love/ hate relationship with her aide. There are many times when she wants nothing to do with the aide. She will even growl at her. Then there are other times when Princess wants to give her aide a hug.

The aide for her part just rolls with it. It is so nice because she really tries to tell me at least one positive thing that Princess did that morning. This past week she did two things that I thought were pretty amazing. She was the only one out of about 40 kids who knew the previous week's bible story. She was asked to come to the front of the class and tell it. According to the aide she even knew the little details. Pretty impressive for a child who appears not to be paying attention most of the time. She also volunteered to say a prayer near the end of the lesson before the students went back into their small groups. This just makes my heart sing.

Since Princess is going to Sunday School on a regular basis we are seeing other fruits as well. She donated a whole roll of quarters for their current missions project. This is money that she either earned or got from the Tooth Fairy. She is eager to learn bible verses. I will say candy is a great motivator for the verses. She has made another friend who has an aide like her. These are great accomplishments for her. My husband and I are so proud of her.

My proudest moment came this past Sunday on the way to church. The radio announcer was hawking a dating site. He said that choosing who you will marry is one of the most important decisions you will ever make. I turned off the radio and asked " What is the most important decision you will ever make?" My daughter replied "Following God." I almost cried tears of joy right there. She gets it. Between church and home, my daughter is making the connection that God is number one in her life.

One very cool way that I could see God's hand in all of this is who He chose to be Princess's aide. My husband was her son's basketball coach over 10 years ago. She feels like helping Princess is a way to pay it forward. Her weekday job is as an OT working with kiddos like my daughter so nothing that Princess does phases her. I feel so blessed.

My church is just another part of our village that is helping my husband and I to raise Princess.

Here's a link to my church, EV Free Fullerton. Here's more information about Disabilities Ministry at EV Free.