They Dont See.....

                                  Anyone who has to fight the system for their children will understand that the process is exhausting!!!  It is the most frustrating thing to try to fight to get your child's needs met and have those needs not be acknowledged.  It is heart wrenching and makes you feel like screaming for anyone to listen!  You feel ignored and worse yet you feel as if your child is being ignored. You feel like a failure when you aren't able to get for your child all that you know he so desperately needs....that somehow you didn't fight hard enough. There is a huge battle that you face every day.  It feels like you are drowning at times and cant catch your breath from the waves that are overpowering you.
                             This is how I feel. I know that may sound weak but it is the truth.  My heart just aches for someone to see all that is needed. They see my son's face and all they see is his smile but they don't see his true struggles.  They don't see his tantrums because he is so frustrated that he cannot communicate what he wants. They don't see his developmental age of 6 months when it comes to feeding.  They don't see that he does not know how to chew and that he gags on puffs. I have been told that his feeding issues as well as his inability to chew are not what they deem as a medical issue. They don't see him cry and scream when he is just shown a new food much less try to be fed it.  They don't see the times when he has thrown his food on the floor out of shear frustration. They don't see that it costs us $300 a month just for David's foods that he will eat. They don't see that the only thing that David will eat right now is pudding, yogurt with Gerber cereal, his Go-Go packs and maybe on a good day processed green beans. They don't see that I cannot cook a meal for us as a family.  I cannot cook a pasta meal and have my son eat some with us. I can't give him a piece of cake or icing without him crying or gagging. I cannot give him a piece of a banana or fruit. I cannot make eggs or even oatmeal for him. I cannot give him pieces of veggies even cut up small. I cannot give him a cracker or chip that he will eat or not choke on. They don't see that he will not put anything in his mouth but processed food. They don't see the times where he almost choked from not knowing how to chew his food. They do not see that if I were to make spaghetti or some other meal and I processed that food he would not eat it.  He would sit there and cry. Believe me I have tried it all!
                                    My heart just aches and I am so tired. I wish I was so much stronger.  I battle the thoughts of the enemy that tell me that I am failing my child because of the denials.  I know that to not be true.  I know that even though there are times when I feel that way deep down I know that I am an amazing mom.  I am David's voice.  I am his biggest cheerleader.  I am his advocate.  I will continue to be until Jesus calls me home!  I am proud to be his mom!  Even though it is a battle that will be life long I would not change David one bit.  He is created in the image of Christ to be exactly who is to be. I look at him and see a tool that the Lord is using to draw people closer to Christ.  I see how much I am loved by the Lord as I learn to trust Him in this journey.  I look at my son and see this precious gift that God has given to me and Brian.....this miracle child that will do great things.
                                   There is a song that has become my theme song lately called Oceans.  It keeps ringing through my head over and over again and many times this week I have woken up singing it. It is where I want to be. It is my prayer that I continually pray.....that I may learn to trust the Lord without borders.  That I may choose to trust even when I feel the waves overpowering me.  That I might be able to look at this journey as a lesson in learning to trust the Lord in the midst of the unknown and then be able to look at this journey as a blessing.  My son is a blessing!  Because I know these truths I find that Autism is a blessing even when it is hard to see. May it continue to teach me to trust Him without borders that my faith may be made stronger as I look to Jesus.

   Oceans (Where Feet May Fail)

  You call me out upon the waters
The great unknown where feet may fail
And there I find You in the mystery
In oceans deep
My faith will stand

And I will call upon Your name
And keep my eyes above the waves
When oceans rise
My soul will rest in Your embrace
For I am Yours and You are mine

Your grace abounds in deepest waters
Your sovereign hand
Will be my guide
Where feet may fail and fear surrounds me
You've never failed and You won't start now

So I will call upon Your name
And keep my eyes above the waves
When oceans rise
My soul will rest in Your embrace
For I am Yours and You are mine

Spirit lead me where my trust is without borders
Let me walk upon the waters
Wherever You would call me
Take me deeper than my feet could ever wander
And my faith will be made stronger
In the presence of my Savior

 

 





   
                                            

Special Surprise From The Lord

                                                 As I wrote in my previous blog post there were many ways that the Lord has used situations to teach me what it means to rest in Him in the midst of the chaos.  In those situations he provided many opportunities to teach me that very important lesson that I will continue to learn through out the years to come. For several months I had been longing for this special surprise but didn't really realize it until it fell right into my lap.
                                               This surprise that just proved to me just how AWESOME and LOVING the Lord is and reminded me that He cares for not just my needs but also my wants was how He provided for me to be able to go to a ladies worship night out of town. Two Saturdays ago out of the blue a friend asked me if I wanted to attend a womens night of worship at a church a few hours away from our house. She was going to lead worship and my husband (who rocks by the way) pushed me out the door! While I was there I just felt so parched spiritually. I was struggling with the stress of all that was going on.  I was going and going and going and the Lord knew that I needed to just stop and breathe! I was blessed to be able to meet some really awesome ladies who loved the Lord and who were so very real! We shared a wonderful meal as we fellowshiped and encouraged each other. It was so refreshing to just be there.  After dinner we had a time of worship for a few hours. I sat by myself and I could not get enough of Jesus.
                                  The focus of the night was Praise in the midst of trials. To be honest, I had a hard time at first. I wish I could say that it was easy for me. It wasn't.  I was so exhausted emotionally by all that is happening with David. I was going through a week where I realized I was grieving for what I had thought would be reality for my child.  I was struggling with feelings of guilt.  I was fighting blaming myself for his delays. I was so tired. I was just very sad. I stood and sang every song.  I prayed. Some songs I could barely sing because all I could do was cry. I finally realized how much I was grieving and that I needed to just lay it all out to the Lord.  I sat there and have never cried so hard in worship before.  I was able to acknowledge in that time before Him just how weak I was...how much I was grieving. I had been afraid to acknowledge my grief.  I felt shame. But, as I continued to pray I started to listen to the words that I was singing and I was able to hear the Lord. It was just a sweet time of fellowship at His feet. I remember the feeling that I could almost feel the Lord put His hand on me in comfort. I didn't feel condemnation, I felt love.  It was probably one of the most precious moments of worship I had ever had.  I was so very grateful.  I thought that was all that the Lord was blessing me with and then He surprised me again!
                                    At the beginning of the evening the womens ministry leader shared her heart and was refreshingly honest about the fact that she was having a hard time getting into the attitude of praise due to the crazy events that had happened during the day.  She was feeling so rushed and her point was that worship is a choice not based on feelings. Worship is the sacrifice of praise.  It isn't always easy. We don't just worship when we feel like it; rather we worship in the midst of pain...in the midst of suffering...in the midst of grief because of who Jesus is! At the end of the evening I wanted to share with her how grateful I was that she chose the subject of the evening to be praise in the midst of trials.  I shared with her how He had ministered to me that evening.  As I shared with her some of my thoughts about the journey with David she stopped me and said, "when I shared tonight that it was a hard thing for me to praise it was because of the struggles that my children WHO HAVE SPECIAL NEEDS were having that day"!  WOW!  God was sooo wonderful to introduce me to this beautiful lady.  The Lord had planned that blessing for me!  As we were leaving I mentioned that I came with my friend that evening because I didn't drive because I had epilepsy.  She stopped again and said that I needed to meet another lady who "has epilepsy and also has a son who has Autism"!  ARE YOU KIDDING ME Lord?!!!  LOL Turns out I had already met this lady at the table I was sitting at. It was such a blessing to be able to meet other moms who were walking this journey.  As if it couldn't get any better someone had invited me to attend the ladies retreat that the church was having in the Fall and decided that they were going to pay for me to go! My cup runneth over by the love of the Lord for me!  I was not only spiritually parched and just needed to feel the Lord's presence I also was hungering after more friendships with mothers who are walking this same journey.  He gave me exceedingly more than I had expected to receive that evening.  His love for me is so much deeper than I will ever realize.  Those things that I didn't realize that I needed He had so lovingly provided.  He is faithful!                                                

Learning to Rest In the Middle of Chaos

                                                I cant believe it has been a month since I have last blogged. Life has been so crazy but I have been thinking a lot about what I have been wanting to write about but have never had a moment to sit and write out my thoughts. It has been a very eventful month. So many things going on. My thoughts have been racing in the last month and it has begun to feel overwhelming at times. Learning to rest in Jesus in the midst of chaos has been the theme this last month. There have been many opportunities the Lord has put before me to help me learn to rest. Most have been challenging. But if they were not challenging how would I learn right? Life would be easy and I may have just gone my merry way through life without experiencing the precious moments of hearing the gentle whispers of Jesus to my heart. Because of that this will be a two-parter that I pray will encourage you in learning to rest in Him and His promises.  I pray that you will stay tune for the second half of this as I pour out my heart in my writing.
                                             David will be starting pre-school on September 2nd and I CANNOT wait for him to start this new journey. I have enjoyed having him home. I have been blessed beyond measure to be able to be both a stay and home mom and work full time from home.  However, it is truly time for him to be with his friends. I cannot provide all of the social needs that he has and quite frankly I think he needs to not be with mommy all the time. It will be sooo great for him in so many ways.  He will have a daily routine of going to school and learning to be social and learn to share and so many skills that he is slow in developing for his age. I have perfect peace about the timing! His pre-school that he will be attending is a private Christian pre-school where he will get a Christian education by teachers whose goal is to not only teach him academically but to see him spiritually grow as well....even at his young age. He will learn about Jesus every day. The Lord has provided for his schooling to be paid for and we wont ever see a bill this year....the check for the whole thing has already been written. PRAISE JESUS from Whom ALL blessings flow! He will attend five mornings a week and will continue to receive speech and occupational therapy in school. His teachers are wonderful and obviously love the children that they teach every day. He will also be in an inclusive classroom with other children that are typical in their development that he can learn from as well. His special eduation teacher is so excited to be teaching him and has such great hopes for him! 
                                                We also had the IEP (Individualized Education Plan) process to complete.  So many meetings. So many evaluations and observations of David by speech therapists, occupational therapists, psychiatrists etc. These were visits that were on top of his current therapy sessions. Those weeks were so exhausting both for me and for David. For two weeks he probably had 4 meetings each week between his regular therapy and his evaluations for the IEP process.  It was insane.  If I was exhausted I cant even imagine how stressed and tired he was. But it had to happen. If we were going to make sure that he was going to be able to receive the services he needed we had to go through this gruelling process. I was dreading the final IEP meeting.  On most days that he was evaluated he was having good days. I was afraid that they would not see the realities of his struggles and would not agree with me about my concerns. David still is not eating like a typical child his age.  He still continues to refuse texturized food.  He will still get upset when presented with finger foods of any kind.  I was so afraid that they would feel that he needed to be in an exclusive special education environment.  I was dreading this meeting. However, the closer we were to this meeting the Lord was so faithful in giving me peace in my concerns.  We went to this meeting and sat through a two hour long discussion as we walked through all of the evaluations. Finally we were at the part where we discussed his eligibility and needs. It was decided that he was eligible for services based on his diagnosis of Autism and would receive speech and occupational therapy several times a week for the entire year.  I was so very grateful!  However, the part that I was most grateful for was the section about the goals that they setting for him. There was not one thing that I disagreed with and to my surprise ALL the goals that were set were EXACTLY the things that I wanted them to do.  I was truly amazed!  The Lord had heard my cries.  He had listened and He provided all that I felt David needed.  I felt a little foolish as I thought about all of my anxieties and fears.  How could I not trust Jesus to provide when He loves our son so much more than we do?  What a thought! 
                                        
And there was so much more.........