A long time...

Yikes, I thought the summer months would bring more time/chances to blog but that hasn't happened.

I realized that I hadn't updated you all on Eli and this journey we find ourselves on with him. After his ear tube surgery he was evaluated again by a special education teacher that I was referred to by one of the speech teachers in the school district. it took about 2 hours but this teacher and about 3 other assistants did numerous "tests' on Eli. For example, they asked him to stack blocks and jump up and down. They asked me pages and pages of questions for information all the way back to my labor and delivery of Eli! I went back a week later to hear the results of their findings. Eli is severely developmentally delayed and speech impaired due to hearing loss. Because of these things they were able to develop an IEP (Individualized Education Plan). What this is is a "list" of specific needs and adaptions Eli will need to be able to learn in a classroom and to catch up to other kids his age. They determined that Eli's communication skills are equivalent to an 18-24 month old. A child's communication skills are directly related to their emotional abilities and problem solving skills, etc. Not only was Eli underachieving in the area of communication but his delay has effected his ability to interact with his peers and "solve problems". He never had the chance to "learn" what things mean or what they do because he could not hear us communicating to him...well, actually, Eli has never hit the "Why mommy" and "What is that?" stage. Starting the end of August Eli will attend the special education preschool held in the Head Start building in town. He will have a regular or special ed teacher and also a speech therapist. He enjoyed being in the classroom during the two visits we made. I have no doubts he will adjust well. I fear the road ahead for him. I fear the long term effects of his hearing loss. I fear the struggle he will face to learn simple things. Thank the Lord Eli and I are separate people.

We all know the dangerous stigma attached to "special education" or "special needs" labels. I am REALLY struggling with this! We are yet again faced with the decision of how much information to tell Evan's family. In light of things that have happened in the last year there is a real trust issue...mostly from me. My fear is that people will lower the "bar of expectation" or even hope for Eli and his future. Evan is concerned that people in the family will begin to "talk down" to Eli after they are told he has "special needs". Evan wants to tell the family because of a recent conversation with Evan's mom and dad. Evan's dad started talking down to Eli as if he and Madeline were the same age. He'd ask, "Eli where is your nose?". Evan later asked me if I noticed that and if it bothered me. I really hadn't noticed. Eli is not a person who will sit and chatter with you (speech delay or not) like Madeline will. Eli is a touchy-feely kid and he wants to relate with you by playing on the floor with you or having you read him a book. Eli's grandparents see him once maybe twice a year so they don't know him in that way. I dismissed Evan's dad's ridiculous questions to Eli because Eli was ignoring him anyway. It bothered Evan though. He wanted to tell his father that he could talk to Eli like a normal kid. I reminded Evan that his father did not know the whole situation so we couldn't judge him too harshly. This sparked a 2 hour discussion on should we/shouldn't we tell them.

Again the trust issue comes up with me. I can handle or process the things the Warden's say or do to me. I know I can be unreasonable at times so I deal with it! I just don't know if I can "hold back" when it comes to things being said or done to my children. There was a suggestion last Christmas that Evan and I were not doing anything to help Eli along with his speech...this sparked a TOTAL pulling away by me! I just felt like "you get one chance and one chance only with guarding the hearts of my babies" and that was it...enter mama bear!! This was before we learned of Eli's hearing loss. I was SO thankful we had taken the road of silence concerning Eli. I had and still have a whole load of guilt over that. Mom's are just supposed to know when something is wrong...and I didn't catch it...I didn't save my baby. I was able to separate my guilt from what Eli needed from me at each interval of his journey...thank the Lord for that! My feeling guilty is mine...it is even moved into grieving in a way. All summed up it is a process. A small scale process in the shadow of other things in my life, but a learning and growing process just the same. I hope to come out on the other side a wiser, less self critical mom! I have learned that grieving in public is a painful mistake no matter what family you were born or married into. The ladies reading these words are my grieving party. A soft place to land and to be patched up. Women who can look at my grief with wisdom and know there are infinite paths to arrive at God's feet and receive His Truth in Love!! You also know this process takes TIME! When I say public grief is a mistake I am reminded of the lack of patience we find with people who can't seem to remember love or compassion when they see someone in pain. I don't always remember these things when I come face to face with someone still in the "shoes I used to wear". I think I know what they need because it worked for me...stop there!!!...just LOVE!!! Love lays the bricks in the path to healing!!

Anyway, Evan and I have not come to a mutual decision concerning Eli and whether we should tell family. I feel like I am throwing him in the deep end...by having to trust that he won't be hurt by words or action of people who aren't always sensitive. We don't know if this problem will have long term effects on Eli. If we tell them now aren't we obligated to continue to inform them on his progress...even when he fails? In me aggressive need for control I know that I will not be able to control what is said about Eli and even who hears. I feel like Eli will stick out like a sore thumb in a family where no one else has "special needs". Evan and I succeed in treating Eli equally at home...but will he find this thoughtfulness everywhere else? Will some people choose to ignore him because "he doesn't understand anyway"? Will Eli's parents be able to control their anger when they see him being treated like he was "stupid"????? What would you all do?