I’m Different

So God created mankind in his own image, in the image of God he created them… Genesis 1:27

Do yourself a favor and watch this sweet video of Maggie’s solo at her kindergarten graduation.  

Sorry, one more.  This is a clip of Jacob and Maggie’s competition last month with A Chance to Dance.

This week Jacob said something that paralyzed me.

“I’m different.” 

He was not asking me if there was something in particular that set him apart from his peers, he was stating a fact.  I had anticipated that perhaps one day in the distant future Jacob and/or Maggie would come to the realization that they have qualities (quirks) that make them standout from their friends.  I just hadn’t prepared myself for that revelation to be made at such a young age.  Jacob was not able to give any reasoning for this new understanding, but appeared to be quite disheartened.  Had he overheard some of his friends making innocent comments? Had he noticed my incessant method of helicopter-parenting? Had someone said something rude and hurtful?  I was completely caught off guard.  Rather than lie to him or go into profound explanation about his diagnosis, I looked him in the eye and assured him that he is in deed “different”.

Being different shouldn’t have to be viewed as negative.  Giving Jacob the only rationale I could think of with so little warning, I told him that he is unique because God made him that way and He makes everything just as it should be.  Fortunately this answer has seemed to satisfy his curiosity for the time being. I fear that one day either Jacob or Maggie may come to harbor some resentment or even question God’s reasoning for bestowing them with these differences.  I myself still get hurt and angry when I see my children struggle with daily tasks and communication through no fault of their own.  And I am not proud to admit that I have questioned God’s purpose on more than one occasion.  Why would a loving father enable his children to suffer?  If I wasn’t confident that He loves Jacob and Maggie more than I ever could, this very question would have the ability to shake my faith.

I hope and pray that the next time either of them come to me wanting to discuss why they are different I will be better prepared.  Perhaps the conversation will go something like this: My dear sweet child.  Yes, you are different.  But that does not mean that you are any less beautiful or wonderful (Psalm 139:14).  Before I even knew of your existence, God knew everything about you and created you to be a reflection of himself (Genesis 1:27).  I have asked many specialists why you were born different, but they do not offer an answers of assurance, only speculation.  Many more times I have asked God why he would do this to you, why he wouldn’t heal you from this disability.  My darling the truth is I do not know exactly why He allowed you to have a disability, and I am not meant to know his reasoning in this lifetime.  It is beyond my understanding. Through God’s word I have come to embrace the fact that He created you to display His works (John 9:3), and because of you I see God at work each and every day.  You were given an extra special purpose for your life – to be a light of hope in this dark world. By watching your struggles and accomplishments I have learned more about God’s love than I ever could have through a Sunday sermon.  Because you are “different” I am a better version of myself.  Yes, you are different but you are perfect.

Today I am thankful for another successful season of Miracle League Baseball and A Chance to Dance.  Tomorrow we will be missing the conclusion of baseball season in order to attend Jacob and Maggie’s dance recital.  Pictures to come!

 

Oh, Back to School

I have no greater joy than this: to hear that my children are walking in truth. 3 John 1:4

Tomorrow is Maggie’s first day of kindergarten.  How can this be? Actually, she should have started school last year, but Tyler and I chose to hold her out an extra year in order to maximize her hours of intensive ABA therapy.  I have the normal  typical worries about sending my youngest to her first day of school, but because Maggie has been in a school-like setting for four and a half years it is not separation anxiety that overwhelms me.  Been there, done that.  My biggest concerns for her are 1) that she transitions smoothly into a new environment with new-ish faces and, 2) that her language impairment and SPD do not interfere with learning and socializing.  Overall I am excited for Maggie and what awaits her this school year.

The anxiousness that I feel for Maggie beginning school tomorrow is trumped by the considerable amount of uneasiness that I feel because Jacob is not.  Over the past couple of months I have been kept away by the stress and worry of making the best decision for Jacob and his needs.  We have been blessed with a phenomenal God-centered school, and the past two years Jacob has had teachers and classmates that have shown him what it truly means to live like Christ.  They are the BEST! All summer Jacob has asked to go to “his” school, which has made the decision making even harder for this momma.  In order to address some social issues that we have been concerned with we have decided with the blessing and support of our school that Jacob’s start date will simply be postponed while he continues with his intensive therapy regime.

I have prayed and prayed asking God to show me the best solution, and preferably make it very obvious.  The last thing I want to do is make the wrong decision for either Jacob or Maggie because my emotions.  I have prayed asking for God to take control of the situation, because His ways are not mine, they are greater.  Now I must pray for peace in our decision and that Jacob is not upset by it.

I am always on the look out for Christian-based special needs reading material, and was excited to snag a copy of this gem last week.  Using the format of a reference book, I am easily able to find inspirational scriptures related to the areas of focus that I feel are present in life.  I’ve been keeping this book in my car, reading in between therapy sessions, and Romans 5:3-5 jumped off the pages. We can rejoice, too, when we run into problems and trials, for we know that they help us develop endurance.  And endurance develops strength of character, and character strengthens our confident hope of salvation. And this hope will not lead to disappointment. For we know how dearly God loves us, because he has given us the Holy Spirit to fill our hearts with his love. 

Even though I would prefer that circumstance were different, and we weren’t having to decide between traditional school and a therapy-based program I know that we have multiple things to be thankful for in this situation.  I am thankful for an intensive therapy-based program in close proximity to where we currently live.  In early 2012 our family decided to temporarily live in separate parts of the state in order to meet Jacob and Maggie’s needs.  We are now able to live under one roof in a location that is central to more therapy options than we could ever fit into our schedules.  Second, I am thankful for a Christian school that accommodates my children and their individual needs while making them feel loved and welcome.  Lastly, I am thankful for a son that wants to go to school.

**I know the first verse is taken out of context, but I came across it last week during reading and it has stuck with me ever since.

Follow the Leader

 

To him the doorkeeper opens, and the sheep hear his voice, and he calls his own sheep by name and leads them out. When he puts forth all his own, he goes ahead of them, and the sheep follow him because they know his voice. John 10:3-4

Like with most parents, Tyler and I have always tried to put Jacob and Maggie’s needs before our own.  To receive proper services and therapies we have uprooted and temporarily divided our home, left jobs, and said good-bye to loved ones on more than one occasion.  With each new move we have made I have been overcome with aching fear; not knowing if Tyler and I are making the best decision for our family.  Having faith in God’s plan was something that I had to consciously work at daily.    A year and a half ago Tyler and I made a decision that we felt was the best fit for our family and the needs of Jacob and Maggie, but I struggled more than anyone with changes it placed on all of us and questioned if we were making a mistake.  I now see clearly how God directed our path long before we were ever made aware of a need for change.  How amazing is it to worship a God who is omniscient?! A few weeks ago while I was praying I told God that I wanted and needed Him to be in control of our situation, because worrying about schools, therapies, and houses was beginning to take its toll on me.  Almost instantly I felt the stress of my everyday dealings ease, and my tasks seemed less daunting.

Last month Maggie participated in her first dance recital with her A Chance to Dance friends, and she blew me away.  I was preparing for the possibility of a meltdown, but Maggie danced her heart out!  Because she enjoyed it so much, Maggie is continuing with dance classes and will be participating in an upcoming competition.

And this picture of Jacob was too precious not to share.  Each Wednesday his school begins the morning with chapel, and he felt the desire to assist.  Oh, how I am so touched that he is at a school that embraces his differences.  Jacob will soon be joining Maggie for behavior therapy.  We are trusting that it will be extremely beneficial for him.

Today I am thankful for all of the changes that I once viewed as challenges.

Sunshine and Tennis Shoes

 

Then Joshua said to the people, “Consecrate yourselves, for tomorrow the Lord will do wonders among you.” Joshua  3:5

I recently read the story of Joshua leading Israel to claim the land that God had promised to them.  By discussing this story with Tom, I was reminded of the significance of the Israelites crossing the Jordan.  God did not send Joshua to cross the river during the dry season, however he was sent to cross when the river was flooded.  And by His grace God lead the Israelites through a situation that in all other circumstances should have been doomed.  Some could say that my own little family’s situation is “doomed” because of Jacob and Maggie’s autism, but to those people I would simply say “tomorrow the Lord will do wonders among you.”    Jacob and Maggie may have been given a rough start, but that will just make their progress even more impressive.

Yesterday we participated in our fourth 5K fundraiser for the center.  As usual we were late, but fortunately we made it just in time for Jacob and Maggie to participate in the Kids Fun Run.  Jacob finished third, and received his first-ever trophy.  He was so proud of himself that he was beaming the rest of the day.  This was Maggie’s first year to participate in the Kids Fun Run, but she quickly caught on. She didn’t necessarily have a great finished, but she sure looked good while trying.  We are thrilled for both of them.

Today I am thankful for sunshine and tennis shoes.

Summer Break

And the LORD passed by before him, and proclaimed, The LORD, The LORD God, merciful and gracious, longsuffering, and abundant in goodness and truth. Exodus 34:6

At times, especially those that are the most trying, the only way that I can receive peace is by studying my Bible. While this practice always brings me comfort, I know that it is something that I fail to do often enough. Recently I have become fascinated with Moses and studying his character. As a child I was taught of Moses’ unfortunate beginnings, having been born during a time at which the all Hebrew males were ordered by the Egyptian pharaoh to be killed at birth. But God’s plans being greater, Moses’ life was spared as he was incidentally raised in the pharaoh’s palace. I was also told of Moses leading the people of Israel, his people, out of Egypt by parting the seas, and then eventually presenting his people with God’s commandments. Undoubtably an eminent prophet, it is Moses’ shortcomings that are intriguing to me. With God, Moses was able to accomplish great things that at times he even seemed to question. “And Moses said unto the LORD, O my Lord, I am not eloquent, neither heretofore, nor since thou hast spoken unto thy servant: but I am slow of speech, and of a slow tongue. And the LORD said unto him, Who hath made man’s mouth? or who maketh the dumb, or deaf, or the seeing, or the blind? have not I the LORD? Now therefore go, and I will be with thy mouth, and teach thee what thou shalt say.” Exodus 4:10-12. Though God did not anoint Moses with the ability to speak well, He allowed him to fulfill his prophecies with the assistance of his brother Aaron. By studying Moses I am brought solace that Jacob and Maggie will accomplish great things in spite of the challenges that face, as they have been made in God’s likeness. By indirectly studying Aaron I am reminded that God’s plan is much greater than my own, and I am given satisfaction knowing that Tyler and I have been blessed with the responsibility and privilege of being the voice for our children.

To date, this has been the most fast-paced summer that Tyler and I have experienced since Jacob’s birth. Last month Jacob became consumed with excitement and accidentally put his hand through our living room window resulting in a sizeable gash in his wrist. This was the most frightening ordeal I have been through, but Jacob was a trooper through it all. At the emergency room the nurses said that they had never seen an injury like his that hadn’t resulted in serious nerve or ligament damage. Amazingly the cut was essentially only a bad flesh wound that required 20-30 stitches (we lost count). Jacob was extremely cautious with his wound while it was healing, and he is now doing great and sporting a serious battle scar.

Shortly after Jacob’s trip to the ER it was Maggie’s turn to visit the hospital. Maggie underwent an EEG to determine whether or not she was having seizure activity. She did great during the entire process. I had been suspecting activity for a few months now, but her EEG was “normal”. Even though there was no seizure activity shown, the results have not put me at ease. In addition to her EEG, Maggie’s neurologist has ordered a sedated MRI for later this month to look for abnormalities that might indicate seizure activity.

Our summer has not been consumed only with doctor appointments, however. Jacob and Maggie went on a field trip to a near by theme park, and they absolutely loved it. We have been able to visit the lake again, and even to the movie theatre. And while it appears that Jacob still loves watching fireworks, it seems that Maggie is not a fan. My favorite aspect of the summer though, has been being able to observe Jacob and Maggie in therapy. It is humbling to see how hard that both work each day, and it makes me so appreciative of all the hard work that the CBTs put in. It truly does take a special person to work with autism patients. Currently Maggie is working on potty training, and she is doing wonderful with it. I never knew how powerful of an incentive Toy Story could be. On the same topic, the rate of Jacob’s accidents has decreased greatly, and he is even requesting to use the restroom independently. We are expecting a diaper free home very soon.

Today I am thankful for a summer “vacation”. Without it we would be hard-pressed for fitting in all of Jacob’s and Maggie’s appointments.

I prayed for this child

“I prayed for this child, and the Lord has granted me what I asked of him.  So now I give him to the Lord. For his whole life he will be given over to the Lord.” And he worshiped the Lord there.  1 Samuel 1:27-28

*Jacob is nuzzled up to me as I am writing this, so I apologize in advance for typos.

When expecting both Jacob and Maggie I prayed to the Lord a solitary request.  The gender of either child was not of importance; I wanted both of my children to be born healthy.  But, the Lord knows what is best, and what we can manage, and I know now more than ever that He answers each prayer in His way, not ours.  However I must be thankful, the physical health of both Jacob and Maggie is relatively good on most days, and even when Jacob had to have his two surgeries (one for his ears, another for hydrocele repair) we were referred to two wonderful doctors that I would highly recommend to anyone.

As prayer turns to Jacob’s autism, I can always find an aspect to be thankful for.  The occasions when Jacob has had case workers that were not particularly helpful, he has been given others who have all been blessings.  Then, a year ago we were fortunate to find a PCP who welcomed Jacob as a patient, and immediately referred us to specialists at the Kelly O’Leary Center.  Our PCP is great.  Even more so, when I see other children with autism, suffering from symptoms that we have not yet had to endure, my heart aches, but I also give thanks for where Jacob falls on the spectrum.

Jacob is continuing to do well in therapy, and soon he will no longer be the only “baby”.  There are two prospects, both Jacob’s age, which should be starting anytime.  We are eager for the other children to begin and for further opportunities for Jacob to engage with children his own age.  Because of the new students Jacob has transitioned into a new room, and so far he seems to be adjusting well.  Other great news, the center has hired an SLP, and the children should begin receiving speech therapy very soon.  He is working so hard every day, so much so that he rarely makes it through the day without a nap.  But his hard work is paying off.

Today am I thankful for all of Jacob’s blessings, and for all of the people involved in making this journey possible.

What is Autism?

Dear children, let us not love with words or tongue but with actions and in truth.  1 John 3:18

I often forget that autism does not consume everyone’s daily life as it does my own.  Since Jacob was first diagnosed back in August, a day has not gone by that the word autism has not come up in conversation.  So when I was if Jacob was slow I was not so much offended as I was determined to clear up misconceptions.  Therefore, I feel I must try to define Jacob’s diagnosis before I report on his progress.

Autism is a complex developmental disorder that affects one’s communication and social skills.  Currently, 1 in 110 children are diagnosed with an autism spectrum disorder, the vast majority of whom are boys.  Though people on the spectrum may exhibit similar distinguishing characteristics, there is a saying that if you have met one person with autism, then you have met one person with autism. Each case is different and symptoms vary from mild to the more severe.  As Jacob was closing in on his second birthday Tyler and I began to grow concerned about some particular behaviors.  Jacob was not trying to communicate to us in words or gestures, just by hitting and tantruming.  In addition, it was seldom that Jacob responded to his name and he was having one ear infection after the next (common for children with ASD) so we suspected that his communication delay was a result of an inability to hear.  As any proactive parents would have done, we had his hearing tested and learned that Jacob did in deed have hearing loss.  Surgery to implant drainage tubes in Jacob’s ear soon followed.  Tyler and I had thought that we had eliminated the culprit responsible for our son’s communication delay, but it seemed that Jacob’s odd behaviors only escalated.  Jacob continued to remain silent and was still not responding to his name, then we began to notice that he was walking on his toes and flapping his hands when overstimulated (also characteristics of autism).   Many people with autism have obsessive compulsive tendencies.  Often instead of playing with toys, children with autism have to line the toys in rows or stack them.  Jacob does not line things up, rather his OCD causes him to fixate on opening and closing doors, and while he does stack things, he does so with the intention of knocking them over.

Another common issue that people with ASD face is sensory perception.  Particular noises are difficult for Jacob to process and his sense of touch is heightened so much that particular textures are offensive to him.  Additionally, many people with autism can been picky eaters.   Jacob’s aversions with food are so intense that his diet is limited to only a few items.  A therapist once asked us to list all of the things Jacob would eat, and we couldn’t even compile a Top Ten.  At times I feel helpless, and if being honest, a failure.  As a mother, I feel that I should be able to comfort my child, but all too often I don’t know how.  When left not knowing how to help Jacob in a moment of sensory overload sometimes I just have to stop and allow him to self-sooth.

Even if their view of the world may be unconventional, people with ASD are not slow.  In fact, quite the contrary.  Many people with autism have become artists, actors, Pulitzer Prize winners, and even presidents.  *The Bible tells of how God used the weak to complete seemingly impossible tasks, calling upon a murderer with speech impediments of his own to free His people (Moses).*  A few notable people with autism (or suspected ASD) include: Bob Dylan, Emily Dickinson, Temple Grandin, Albert Einstein, Wolfgang Amadeus Mozart, Abraham Lincoln, and Thomas Jefferson.  Jacob may never write a symphony or be an influential world leader, but I think you would agree that he is in good company.

Jacob has ben receiving ABA therapy for nearly a week now, and I had begun to suspect that he had taken to a particular therapist at his school.  My suspicions were confirmed this morning as I was dropping him off.  Like many toddlers, Jacob does not handle separation well.  The past few mornings I have had to pry his legs from around my waist and my shirts have been left damp with his tears. This morning was different.  Though he cried, he reached for his therapist.  It appears that Jacob has fallen in love with an older woman.  I am thankful that God has placed this therapist in Jacob’s life.  I am happy to report that today was a great day – he said Momma!!!!