Bloggy Moms

Sunday, March 30, 2014

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.

Wednesday, March 19, 2014

Adventures With KiKi

Saturday night Princess could not find her beloved KiKi. In fact we did not find it until yesterday. During the time that it was lost Princess told me that she felt that she was letting KiKi down because she promised her (Yes Kiki is a girl.) that she was going to take her to college.  I silently chuckled because it is both cute and funny.
In case you did not know or figure it out, Kiki is short for Blankie.When Princess was little and was learning to talk, she would say the same syllable of longer words twice. Slippers became slip slips and Blankie became KiKi. Somehow KiKi stuck.
 It is very interesting how KiKi came to be. When Princess was about 1 1/2 a friend of mine noticed that she liked to touch things. She suggested I get a yard of fleece blanket material from the fabric store, cut it into pieces and fringe the edges of each piece. The theory being that if Princess lost one piece or it needed to be washed, that I would have another piece ready to go. The problem with most theories is that real life plays out much differently. Princess become attached to KiKi and only wanted that one. When I tried to swap it out for another, she knew. She even called the other one Pretend KiKi. Suffice to say that KiKi is now like the Velveteen Rabbit only instead of fur that got rubbed off it was fleece pills that went missing. Instead of eyes that fell off, it was "arms" ie fringes that wore off. Oh how Princess has loved her KiKi!
 I will tell you that KiKi is no ordinary blankie. She comforts those in distress and heals wounds. When Princess was little, she firmly believed that if you rubbed Kiki on a sore your sore would feel better instantly. KiKi has her own persona. Her sole purpose in life is to comfort others especially Princess. If someone is crying, KiKi will wipe away the tears.
Princess takes her everywhere. As she has gotten older her father and I have had to come up with some rules regarding KiKi. She is no longer allowed at school because Princess will shove  her in her classmates' faces asking them to smell her. She has to stay in the car when we go into stores. Otherwise KiKi becomes a distraction to others.
Interestingly enough, when Princess is doing well, we don't see as much of KiKi. It is like she doesn't need it the more secure she is.
We have tried not to let Princess become too dependent on her. When KiKi is lost we no longer look for her as much. We encourage Princess to do that.
I am fully aware that most NT kids are not as dependent on their comfort item at age 9 but I do not feel it would be beneficial to push Princess to get rid of KiKi until she is ready to. I do believe that KiKi will one day be put away for safe keeping but she will never end up in the trash. She is like another family member.

Here's a picture of Princess's beloved KiKi.

Tuesday, March 4, 2014

In Reponse to Your Rant

I read a bog post the other day that really got me unnerved. It was about how moms of Special Needs kids are always bragging about our kids' achievements. It said that we don't take the time to listen to moms of NT (Neurotypical ie. normal) when they share or celebrate or "brag" about their kiddos' accomplishments. The blogger felt that the moms/ parents of Special Needs children get tunnel vision. When I was done reading it, I felt like I has just had a tongue lashing.
I'll admit, I am guilty as charged. I do have tunnel vision where my child is concerned. I am even guilty of celebrating every single little milestone. I'm sure my friends get tired of it. Fortunately for me. They don't tell me. They let me bask in the glory.
I may never stop marveling at my child's achievements. I may find it difficult to celebrate that Johnny scored the winning goal in soccer. Please bear with me.
Do you know why I celebrate every time Princess does something new? It is because I know what we went through to get here. I know that my daughter had a melt down every time we even mentioned the word "shower". I know there was a time that pencils and chairs would fly through the air during homework. I remember when play dates ended in tears. There were many times that I had to call a parent to pick up their child early from a play date because my child was having a rough day.
So you see the fact that my child is blossoming is a huge deal for me. I do savor every minute that my child has success. It is akin to a baby taking their first steps or saying their first words because we have never experienced these things before.
There's even more reason for me to celebrate than most parents of Special Needs kids. It is this, because my daughter has a mood disorder and has not yet entered puberty we have no idea how long this period of stability will last. You better believe I am going to relish every single milestone my child reaches.
You see for NT kids the obstacles that my child has had to overcome are just that normal.
If you'll humor me and celebrate my child with me, I promise I will try to celebrate your child with you. Please be patient with me though. Parenting a Special Needs child can be all consuming. Let's all try to understand each others perspective more.
I'd like to know your thoughts on this.
Please check out my FB page called- Raising a Drama Queen: Musings and Insights in Bipolar Land