Friday, March 09, 2012

Special Needs Spotlight: Jake





I am Jodie Stevenson and my 13 year old son, Jake, has severe autism, mild mental retardation and epilepsy.  My husband, Jason, and I have two other children, Jessica, who is 14 1/2 years old and Josh, who is 8 1/2.  Jessica and Josh do not have disabilities and are typical in their development.  I NEVER say they are "normal" anymore because we are all abnormal is our own ways!  :)  Jason and I planned on at least having six children, but when we saw how much extra work Jakey's needs were going to be, we had to decide to be done at three.  Jake is only 13, but weighs 240 lbs and is now looking at me eye to eye at 6' tall!  He weighed 12 lbs when he was born; CRAZY I KNOW!  We call Jake "Jakey" because he has the mental capacity of a two year old.  As I write this, tears are welling up in my eyes because our lives the last 10 years since he was diagnosed have been a difficult journey, but I cannot measure the love I have for my son.  He has taught me extreme patience, endurance and to look at the positive even when it is tough to find!  Jake attends an autism class at school everyday and has a one-on-one aid.  The aid is crucial to keeping him on task.  They go on field trips every Tuesday to teach the boys how to behave in public.  Notice I say, boys.  There are only 8 boys in Jake's class.  Autism is 4 times more likely in boys than in girls.  Now I have seen billboards that say, "Autism is now 1 in 110 births."  This amazes me because when Jake was diagnosed, the only time I had ever heard the word autism was in reference to the movie Rainman.  Sometimes I look back and wonder how my husband and I have survived this far raising Jake, but I can honestly say we could do anything, I believe absolutely anything, together now.  We have become SO strong and we know that we are here on this earth to do our best with whatever challenges God gives us.

*************** 

Miggy: I usually ask moms to take me back to the day their son or daughter was diagnosed. Since your sons diagnosis wasn't a one-time thing and since he has 2 separate diagnosis, can you instead take me back to the day when it really sank in that life for you, your son and your family was going to be different? Do you remember how you first felt when this all sank in? Can you compare those first thoughts and feelings with how you feel now?

Jodie:  I remember feeling lost and confused when I got the second diagnosis.  Driving home that day from the school district's psychologist, I remember just crying.  It was strange though because everyone kept telling me, "Oh, he'll get better, he'll get better."  And he never did.  Jake was 3 years old and so many people said they knew a boy who didn't start talking until he was 4, and boys talk much later than girls.  I SO wanted to believe them, but it was more than talking for my son.  He had no interest in playing with other children or his sister who is only a year and a half older than him.  He didn't respond to anything verbal.  He had his first seizure just after he turned four and I know that's when everything really sank in for me.  We thought he was dying.  I'll never forget how he looked that night.  Jake doesn't shake uncontrollably during his seizures.  He does shake some, but he stops breathing, his eyes roll back, and he just drops to the floor.  So it does look like he's going to die to those who have not witnessed it.  We have spent many nights in the hospital when he has his worst seizures that last over 5 minutes.  Thankfully, that only happens a couple of times a year.  My husband and I are absolute pros at handling Jake now.  But those first few years, we just barely survived. 


Miggy:  Explain how your son’s specific special need affects your day-to-day life?  
Jodie:  I could go on and on about this question, but I'll try to be concise.  We have padlocks on every cabinet that has food in it or he would eat everything, we CONSTANTLY have to padlock our refrigerator, we have locks on every door to the outside (he used to run away and into other people's homes-I could write a book on that!) and now that he is taller, he has figured out basic chain locks on doors so now we have a clip too, we have nothing breakable or valuable where he can get them, and he has broken multiple laptops, printers, phones, frames, sunglasses, etc, so we can't leave them out.  We have our silverware hidden because he enjoys playing with it all if we let him.  He used to flip the TVs down but thankfully stopped that.  All of our picture frames have plexiglass because you can imagine how scary it is when you see your autistic son playing with shards of glass from the frame he just broke while playing with it.  We are active members of The Church of Jesus Christ of Latter Day Saints and church is difficult.  Jake doesn't understand why he has to sit still for 3 hours and likes to make noises during Sacrament Meeting when everyone is SO quiet.   My husband and I switch off going to our meetings.  Jake's needs affect almost every part of our daily life.  He will urinate on his own, but he plays with his feces and that is our biggest chore.  He doesn't understand going #2 on the toilet despite our efforts with behavioral therapists, taking pictures, staying up all night when we KNOW he has to go and giving CRAZY rewards the 2 times he has gone on the toilet.   We always have to keep an eye on him because he will spread poop all over the house!

Miggy:  What are the biggest worries you face for your child?  
Jodie:  We have decided Jake will always live with us.  What I worry about is because he is going to likely  be a 6'6" or taller, at least 300 lb man,  that he might hurt someone.  I am very grateful that he has a very calm and sweet demeanor.  He wants to hug and kiss everyone!!  This is VERY rare for people with autism.  Classic autism behavior is where the person stands in the corner, tries to stay away from all social interaction, and exhibits NO eye contact.  This is where sometimes I think Jake might have mental retardation more that autism because he has always had good eye contact also.  For the most part I can control him in public.  The problem comes in when he really does not want to be at the grocery store, and he has told me repeatedly like squeezing my arm and letting out multiple loud, irritated groans.  This is where he gets aggressive and has pushed over six red wine bottles, (oh what a huge mess) and tried to stand up on patio furniture.  The only time he tries to hit his aid at school is when he is tired of doing his work.  He isn't trying to hurt others, he is just frustrated that his message isn't getting across.  He has never injured others.  I believe I will have to use a wheelchair eventually when Jake is so much larger than me and my husband is not with us.  My husband is a very stong man, and will be able to keep Jake and those around him safe for Jake's entire life.  If Jake outlives myself and my husband, which I pray will never happen, he will have to go to a home.  We don't think it would be right to expect my other two children to care for him unless they and their spouses really wanted to.  Jake is a full time job!

Miggy:  Now for a lighter question, have you ever had any funny conversations/moments you never imagined due to your special needs situations?
Jodie:  When my husband was walking around the mall with Jake when he was about 6, Jake was behind a lady who had a lot of beads and sparkly embellishments on her jeans.  That was right at Jake's eye level back then, and he enjoys different textures and started to touch them.  The lady turned around, immediately thought it was my husband and said "YOU PERVERT!"  My husband was shocked! He hadn't seen what Jake was doing and then quickly said, "Oh I'm so sorry, he liked the textures and my son is autistic" and tried to keep explaining.  The lady said "Artistic?"  And walked away in a huff!  We still laugh about that one.  Another more recent experience was when our family was all in a crowded Carl's Jr. restaurant.  When Jake was done eating, he was ready to go.   We asked our 14 year old daughter if she could take him out to the car and we would be there in a minute.  She gave us an annoyed look, which we just chalked up to her age, but did it anyway.  When we got to the car, she said there were some kids from her school there and since we walk with Jake arm in arm to keep him from grabbing other people's food, she said it looked like to others that Jake was her boyfriend!  My husband and I never would have thought that in a million years!  That helped me realize that since Jake doesn't have any physical characteristics that immediately show he is handicapped, I need to remember that he could easily pass for an 18 year old man now!

Miggy:  How can people best approach or respond to your son? Is there something you wish other people knew so as to avoid awkward or hurtful situations?
Jodie:  Autism is one of the toughest disabilities to know the best approach because each person is SO different.  For my son, giving him a high five and simply saying, "Hi Jake!  How you doing?" is perfect.  He will not answer, but he will hear you and look you in the eye.  There is a good chance he will try to hug you, so Jason and I watch for this to determine if it is appropriate or not!!  If you see a person with autism frequently, like your child has a child with autism in their class at school or church, and you and or your child are not sure how to approach them, I think the best thing to do is to ask their parent.  All the parents of autistic children I have met over the years would be happy to explain what would be a good way to approach their son or daughter.  If you are a teacher of a church class and one of your students has autism, I have seen a few handbooks that are very helpful.  There have been more and more articles recently in my church's monthly magazine "The Ensign" about people with disabilities that have been excellent!
We have definitely encountered awkward situations.  We were amazed how quickly Jake could grab a stranger's drink off a fast-food table and snag a french fry!  We have bought drinks to replace them and apologized profusely when this has happened.  I am very glad to say that almost everyone we have had to explain our son's behavior to in public has been very, very nice.  One day, Jake hugged a large man in the pool, bare belly to bare belly, because we think he thought he looked like his grandpa!  I hope others would be kind and Christlike, just as all of us should be.

Miggy:  What is the biggest lesson you’ve learned since becoming a special needs mom?  
Jodie:  I have learned SO MANY lessons, but the biggest would have to be that I can not control everything.  There are weekends when we have plans, Jake has 4 seizures that morning and the plans are cancelled.  It is tough!  I have taught myself to look at the positive and think "I'm glad this happens only once every couple of months."  There have been times he has had seizures at basketball games, malls and at church that are really difficult because all but once I have been by myself and I have had to get him out of there.  After his seizures he is exhausted, so he does not want to move a lot.  I was EXTREMELY stressed during those times because everyone around is freaking out and there is not much you can do when someone is having a seizure except keep them from hurting themselves.  You feel helpless.  We moms all learn flexibility.  We have to or we would go ABSOLUTELY insane dwelling on what we cannot change.  Prayer has been comforting to me because sometimes only Heavenly Father can really understand how you are feeling. 
When I meet Jake in the next life, I will be able to hear his voice!  I can barely imagine it!  It will be surreal.  He will be a tall, grown up man, but he will hug and kiss me like he does everyday in this life.  He will have the sweet, loving personality he has today.  My 14 year old daughter calls him her big teddy bear.  My husband thinks of him as a "gentle giant" because we all know he has a more righteous spirit than anyone we have ever met.  He just needed to gain a body here on earth.  We will treasure spending eternity with him.  We love our "Jakeyboy" so much.
 ***************
Jodie, I want to thank you for sharing your family and your sweet Jakie boy with us.  I was moved and amazed with your strength and love.  So thank you.  I also just want to highlight Jodie's use of the term typical, instead of normal.  I know sometimes people don't know what word to use to describe kids that are different and ss a special needs mom I know I prefer the word typical, as do most other SN moms I know.  Besides, what is normal anyway right?


Every week I feel so privileged to meet another super mom and see all the amazing, extraordinary yet completely ordinary things she does for her kids all in the name of love.  Also, as I read her post I couldn't help be be reminded of this episode of This American Life called Unconditional Love.  If you have time, take a listen.  As always if you or anyone you know would be interested in participating in the special needs spotlight please email me at thislittlemiggy at gmail dot com.


Have a great weekend!   


11 comments:

  1. Thanks for sharing. What an amazing family. I love the swimming pool story...lol.

    ReplyDelete
  2. Anonymous10:26 PM

    My 4 year old daughter and I usually read these together. I want her to grow up with a better understanding of people with special needs. (She looks forward to hearing the stories on your blog.) But tonight as I read this, my chest tightened and I started to sob remembering my daughters first seizure. The fear that she was dying felt so real again and you brought me back to a time where we worried that our own child would not grow up to be "normal". Thank you for your story and I hope that faced with the difficulties you have dealt with, we would have shown the same grace and love.

    ReplyDelete
  3. At your suggestion, I listened tonight to the This American Life episode. So very moving. As are of course all the stories of many wonderful families with amazing kids you are featuring here. Thank you!

    ReplyDelete
  4. Love this spotlight. Thanks for sharing your Jakey with us.

    ReplyDelete
  5. What a wonderful and inspiring family! You can sense the love and strength between them and I feel uplifted after reading this.

    The love that come through all of these wonderful posts is so moving. I feel like I could do anything after reading these, and I am so thankful that you and everyone are willing to share. It is a beautiful work you are all involved in.

    ReplyDelete
  6. What a beautiful and special family. Thank you for sharing.

    ReplyDelete
  7. The parents of the Special Needs Spotlight kids are amazing. All of them. I read this column every week and every week I walk away thinking, "Wow. These kids are so lucky to have the parents they do." Today was no exception.

    Thank you to the children and parents for their inspiration.

    ReplyDelete
  8. Jakey is lucky to have a Mom like you. I was moved to tears reading this. Especially thinking of the day you will talk to Jakey in heaven! He can tell you he loves you & thank you, over & over!

    ReplyDelete
  9. Linda P.8:25 PM

    Thank you so much for telling us about your Jakey, dear Jodie, and for sharing your heart. I relate to parts of your post with my own young adult special needs son. May I say that your story about your husband being wrongfully accused of being a pervert at the mall was sooo funny. I know he was probably horrified at the time, but it surely does make for a good story now, doesn't it? Thank you, Miggy, for featuring this family!

    ReplyDelete
  10. I just found your blog through Dakota's spotlight. I was reading this post and this is my LIFE!!! I have 1 daughter 14. Tanner is 11 and has Autism, Epilepsy and mild mental retardation and Tayson is 5. I just wanted to thank you for sharing your SPOTLIGHTS!! Loved the post

    ReplyDelete
  11. Anonymous12:48 AM

    I can relate to this mom. Or will soon enough, my son is 8. Thank you thank you for sharing. If you are at all interested in talking to other moms in your situation I hope you contact me. I know there always seems like not enough hours in the day, but if you ever find one. I would love to chat. My email is chari0282@aol.com

    ReplyDelete