Part 2. Our Journey with Autism

      In my last post I said that I would write the 2nd part of our 1st month journey, but well it just did not happen. I am learning more and more each day that I never know what to expected when you have children, but even more when you have a child with special needs.
     Like I said in my last post, it did not take as long it was suppose to, to get into testing. If I have learned anything about being an advocate for my child it is that being super nice gets you a lot farther than being rude and pushy. I called the office where Katie-Beth was scheduled to be tested and asked to be put on the cancellation list and I periodically called to make sure she was still on the list. One day we were having a rough day so I called and expressed that we were having a difficult time and asked if we could get her in quicker. I was informed that someone had just cancelled and they could get us in the next day!!!!
        Since testing we have began a regiment of therapies to help our little girl, but let me tell you, it isn't easy. Autism is not like a cold, you can't just take meds and it will go away. Autism isn't something that is going to go away, God blessed us with a daughter with Autism! We are going to therapy to help her learn to adapt.

Through the eyes of a Father

         

         First let me begin by saying that I have written many papers, newsletter articles, and sermons but truthfully none have been as close to my heart as this post. Throughout my life I have experienced many life changing situations and this year especially has been filled with them. However, finally being willing to admit something might not be "right" with my little Katie-Beth and having that confirmed has been the most difficult. I have learned a great deal in the past few weeks. I have began to understand that I cannot fix this. I am beginning to see how to better love my daughter (also the my entire family). I have been reminded over and over that she is a gift from God.

          I am a man that can fix or build just about anything to do with cars, housing, electronics, and sometimes even my daughters' hair (usually this means pulling it out of their eyes and hoping the bow will hold it there). Because of this mindset it can be difficult to see KB as she struggles to absorb her environment and not be able to fix it. When she begins to fidget uncontrollably because she is overwhelmed with stimuli all I want to do is run to her and fix it for her but I can't. There is nothing physical that I can pick up and repair. I am trying to remind myself what I can do out numbers the things I cannot do for her. I can hold here tightly (helps meet her sensory disorder needs). I can pick her up and carry her to a more calming environment. I can look at and treat her with the compassion and the love only a father can offer. I can and will always be there when she needs me!

          As Dawn and her have visited specialist after specialist we have learned so much about our daughter. Things that once were so difficult for us to piece together have begun to fit. All of this adds up to mean I now can look at my beautiful KB and love her in such a way that she understands it. This helps with loving the rest of my family better because it is important to love each person in a way they "feel the love man!" Love is what can make the difference for children especially those that see it through much different eyes than the rest of us.

          When she was born she spent several days in the NICU. While she was there I prayed that no matte waht God chose to do I would give Him praise because she is His child that He simply has loaned to us for a time. That prayer continues to come back to mind even though this is not a life or death situation as before, I still must remember that she is HIS and not mine or Dawn's. This is reassuring for a couple reasons. The first being that no matter how much of an idiot can be God is in control and can use even me. The other thing is that He created us and has big plans for us all. Something Dawn started with Katie-Beth is asking what kind of plan God has for her. Dawn then reminds her that God has a big plan for her life. This is still true and Autism is part of that plan. David writes this in Psalms 139:13-16,

"For it was You who created my inward parts; You knit me together in my mother's womb. I will praise You because I have been remarkably and wonderfully made. Your works are wonderful and I know this well. My bones were not hiddden from You when I was made in secret, when I was formed in the depths of the earth. You eyes saw me when I was formless; all my days were written in Your book and planned before a single one of them began."

She is truly a gift from God one that He has big plans for.

The first month of our Autism Journey, Part 1

After the new Pediatrician said there where a lot of "red flags" she said that she would be right back. Little did I know that she went to speak with another doctor who has first hand experience with Autism.  When I say that he has first hand experience with Autism I do not mean that he just sees many Autistic children at his practice, his son has Autism. (I will be referring to this pediatrician as Dr. A).   She came back in to our room with Dr. A, he actually took time out of his day to come over and say that everything was going to be okay and that they would start the process of getting KB tested and in therapy. When he said that they were going to get the process started he meant it. They took action! By that afternoon one of the nurses called me with the names, phone numbers, dates and times of where we needed to go start getting Katie-Beth the help she needed.  KB was referred to four different places: 1. Pediatric Ophthalmologist 2. Hearing test 3. Speech therapist evaluation 4. Testing.    The eye exam, hearing test, and speech evaluation appointment were within the first week after the appointment with the pediatrician. When I said they moved fast I was not kidding. The eye examine and hearing testes where normal, but the speech evaluation was not. KB does not have a difficult time talking, but rather, has a difficult time expressing what she needs or wants and resorts to screaming instead.  Testing was the one appointment that was the hardest to get into. Our first appointment was originally scheduled for November 5, at 10:30am. I became discouraged, I mean I just found out the she might have Autism and we can not find out for another month? The good thing is that it did not take us until this week to have her tested, I will continue with Part 2 of, " The first month of our Autism Journey," tomorrow!

Living in His grace,
Dawn 

New to the journey, but learning!

Even though our family is super new to this journey there are a few things that we have already learned.

1.  I do know that I was hesitate to even tell others about our sweet KB's diagnosis because I did not want her labeled. My hesitation was changed when my mother-in-law gave me a new perspective. She told me to look at it a different way, look at it as me informing others on how to help her. If others do not know her struggles, they will not be able to help her.

2.  I do know that people mean well when they say things, but some things that people mean for good really get under my skin. For example, when I am in the grocery store and she is having a tantrum, please do not come over and say, "Bless your heart." 

3.  Do not compare her to other kids with Autism. Not every child with Autism exhibit the same behaviors. 

4. Please, Please do not say to us that you do not think she has Autism based on the little knowledge you know of her. She has it, you might mean well, but it makes a us feel like you aren't supportive of our family. 

We need encouragement and we need support.

When did the red flags of Autism begin?

When did the red flags of Autism begin? Katie-Beth has been our little one who has "marched to the beat of her own drum."I noticed that something was different when I was pregnant with her and red flags have raised ever since then. Katie-Beth has always had a difficult time self soothing, as a baby she had a blank stare, has always had a difficult time playing with others, does not do well with loud noises, and large crowds. She also is an extremely picky eater (peanut butter, bread, and chicken are her primary diet), has a difficult time sleeping, and can not stand to be touched. For the first 34 months of her life we just passed it off as she was just an extremely stubborn child or a faze that she was going through and that she is going to be an amazing leader one day. (We still believe that she is going to an amazing leader one day.) As Katie-Beth has gotten older she was been exhibiting more concerning behavior and as a family we have become more and more exhausted and concerned.  Out of desperation and exhaustion I offhandedly mentioned to her new pediatrician our concerns, I honestly was expecting to be told that all these behaviors are just a faze and to just hang in there. When I finished relaying all of the information to the Dr. she had a look of concern on her face and said, "There are many red flags here." I said, "What do you mean red flags?" It was at that point, for the first time, have ever heard the word Autism in relation to my child. My heart dropped! This was the beginning of our journey, the journey of finally being our to relate to and help our wonderful little gift from God.

Living in His Grace,
Dawn

New Season, New Blog

Our family has entered a new season and with any new season one needs a new start. With a new start I felt that our old family blog just didn't "fit" us anymore. Let me give you a recap of what has changed. First off our family is taking a "break" from ministry to minister to our family. We moved back to our home town last March to be closer to family, not knowing that some of our family needed our help dearly. Since our move back we have learned that my grandparents are who God has called us to minister to right now. God instituted the family before the church. We are enjoying our time closer to family. Not only are we enjoying our time closer to family, but we also need their help. Our sweet Katie-Beth has been diagnosed with Obsessive Compulsive Disorder, Autism Spectrum Disorder, and Sensory Processing Disorder. She is currently receiving three types of therapy and an amazing team of professionals working along side our family to ensure she has the best care possible. The primary purpose for this blog is to help friends and family understand our journey with Katie-Beth and to help other families that are on this journey as well.