Wednesday, July 25, 2012

Autism

 This is a warning, I'm likely going to post a VERY LONG message.  It's about my special boy, Aaron.  I'm a little emotional and hope it doesn't spill over too much into this.  Aaron has many wonderful attributes and characteristics that make me absolutely love him to death!  He is sooooo good, so sweet by nature.  He is very generous and giving.  He has a "leader" personality: follow-me- guys kind of a kid, usually in being silly and having fun.  He wants to listen, and usually is pretty good about putting into practice what I teach him, even if it's after a few tries.  I love that he gets so excited to see Isabel after summer school and hugs her, and plays with her.  I love that he and Jordan are best buds.

Aaron also has many things that are very difficult about him.  It started out with language delay.  He would mix up his sounds or syllables in a word and invert them.  He couldn't and still can't remember the right order that words go in a sentence to have it make sense.  Until age 3 I understood what he said about 20-30% of the time (and I'm his mom!).  Up until about age 4, I would talk to him and tell him how he needed to answer me.  I did all of the talking (still do most of the time, but at least he talks back now).  He is VERY, VERY rigid to routine.  I'm talking about I changed the side of the sidewalk that we usually walk on so that we could walk in the shade and Aaron's world fell apart.  You have no idea how much screaming, crying, and begging me to cross back to the other side of the street went on.  At age 3 he was still lining his toys up in a row.  I wondered if it was still normal at that age.  Now that he's age 5 he still does that.
He has a really, really hard time making eye contact.  I have to tell him 500 times during a conversation to look me in the eyes.  His language has started to blossom slowly over the last year and I can understand him all of the time when he talks.  That doesn't necessarily mean he speaks correctly, but it's now comprehensible.  Aaron also has an excellent memory for some things.  He knew the whole alphabet and could count to 31 (that's as high as the calendar goes) just after turning 2.  Sometimes I swear he's got a photographic memory.

When I started noticing things weren't quite the same as other kids his age- around age 3, I started looking into trying to figure out what was wrong.  Insurance wasn't much of a help because you can get testing done, but if you get diagnosed with anything other than "depression or schizophrenia" then they won't cover even the visits for diagnosing.  At that age you go through the school district.  That was a disaster.  I think I heard hundreds of times that his problem "is that he's bilingual".  Without the benefit of even looking at my child.  It was so frustrating.  Finally I got an apt. with a child psychologist at a state run clinic at Primary Children's Hospital.  They diagnosed him as having "Pervasive Developmental Delay" which is on the autistic spectrum. The child psychologist was very optimistic in describing to us that Aaron, like kids with this problem, are born without knowing the social skills that other kids are born with.  For example, looking at people in the eyes, knowing to say hi or bye to someone when they come or go, soliciting interactions with other people.  He said that with lots and lots of coaching that we can eventually teach Aaron these things, and that by around age 8-9 he'll catch up in most ways with other kids his age.

At this point we had decided that for the sake of Aaron, and after a lot of prayer and meditation that we needed to move back to Italy and start getting Aaron help here.  That was the main reason to spawn our move back here.

We've recently been able through lucky coincidences divine intervention been able to get Aaron into a clinic called "La casa del Giardiniere" which is a clinic for this area that specializes in autistic spectrum disorders.  We've done hours and hours of testing.  They video'd the whole thing and reviewed with others their findings.  Yesterday Paolo and I went to meet with the group of specialists- child psychologists, speech therapists, occupational therapists, and probably something else too, can't remember.  They shared the tests that they had done and confirmed that Aaron is on the autistic spectrum.  They didn't give him the exact diagnosis of pervasive developmental delay.  Just that he's on the spectrum.  To be honest I think he's pretty high functioning.

They discussed Aaron's strengths and weaknesses and said that they wanted to work with his strengths in overcoming his weaknesses.  They also stressed not giving him challenges too big for his capacity to overcome in helping him along.  We'll have the occupational therapist in our home shortly to help us with what we need, and then she'll be helping us with school and getting assistance for Aaron there.

One of Aaron's strengths is that he is very good, and much more like kids his age in a "structured" environment, whether it's sitting at the table for structured play time, school, or environments that are familiar to him, he does very well.  He's really good at working "in the box" and falls apart outside of it.  The goal is to help Aaron be less rigid, more flexible and learn to work "outside the box".  Also to help him in social and personal interactions.  I hope one day to be able to have a good interaction with Aaron.  I'm learning to love the ones that he's able to give though.

There is a very noticeable difference between Aaron and Jordan and I love having both of them.  While Aaron with his challenges is very difficult in many ways, I'm learning and growing with him and love him so much.

Getting the diagnosis yesterday was not a surprise, but it was still hard.  There's the part of me, the mother instinct in me that is finally realizing that this most likely isn't a temporary problem but a challenge that we get to work on for this life time.  There's the part of me that is very sad and longs for a child that looks me in the eyes and expresses himself clearly to me.  There's the other part of me that is grateful for what he can give.  There's yet another part of me that is ashamed that I'm so sad about this.  And there's yet another part of me that wants to stand up, take charge, and courageously take steps forward and say that I'll have patience, perseverance, and excitement in trying to lead, guide, and entice the real Aaron out of his shell.  Right now my different selves are fighting with each other, but the "finding joy in the journey" part of me usually wins out after a little fighting.

Last night as I tried to open up and figure out what I was feeling and share it with Paolo he said words to me that were very comforting:  He had the distinct impression that we are sent to this world with a plan to win and overcome and find happiness.  Not a plan to fail.  That God is over us, and over this problem and that he has a plan of success for Aaron.  He has a plan for Paolo and me to overcome and have success, not to fail.

He also reminded me that I have told him many times about the very distinct and overpowering feeling that I've had at different times that God is very interested in my marriage and making it work.  He told me: this is marriage!  Aaron's struggles is part of that promise you've felt inside of you.

Thank you, thank you my sweet heart for buoying me up and being my husband.  I love you!

Now our journey and struggles and joys and pains are just starting.  But I have to say that I'm grateful for them.  I'm grateful for my own personal struggles.  I don't want anyone else's.  I'm grateful to be me.  I'm most especially grateful to be a mother to 3 very beautiful children that are my joy in life.  I'm grateful that during the struggles of life that we're never ever alone!

10 comments:

Heidi said...

i love you jules! you are stronger than you know!!

Brianna Smith said...

You have an incredible ability to find happiness in tough situations. You have been such a major role model for me. I know I will be turning to you a lot in the coming years as I learn how to be a good mom for my future Fragile X children. I love you! You are doing great!

The Tylkas said...

Heidi said exactly
What I was thinking: you're stronger than you know through the atonement of Jesus Christ! Love you!

Pedersen Posse said...

You have such a contagious, positive attitude. Thanks for your honesty. I had no idea you were "struggling" with Aaron. You are a wonderful mom Julie. Aaron, and your other other two kiddos, are lucky to have you and Paolo as parents. Despite the challenges that are sure to come, with your testimony and faith in Christ, I'm sure your family will make the best of it. Good luck! Hugs!

Scott and Karin said...

It's hard, isn't it? I've been struggling with Indie, because of this too. I know what he has. I don't need someone else to tell me, but my struggle has been what else do I need to do for him? I feel like my life is SO busy right now. My kids, RS President, School, and as I've prayed I've felt over and over that all of these things are important and need to be done now. I can't put any of them off. My instinct is to quit school, ask to be released and focus entirely on my family and Indie. And that's not what Heavenly Father wants for me. I hate that answer. Scott and I went to the temple this last week and I went pondering on what Indie needed and what would be best for him and the rest of the family and here was my answer: This is Indie's earthly experience, not yours, Indie's. Do you need to do your best to help him? Yes, of course. But just know that as long as you are doing your best in the context of the other things I have given you to do, he will be okay, it's okay. I love you!

Sabrina Gironda Perkins said...

I miss Aaron so much, he is such a loving kid

Unknown said...

Such a great post. Thanks for writing this. I think you are amazing to be so positive about it. Mike's sister has been a life-long challenge for all of those close to her, but one that none of them would ever trade an easy, different Brittney for. I so believe that we are part of families and communities with people who are different than us and have different struggles so we all learn and grow together. You're awesome. I know you're doing such a great job.

Chris said...

My Landon is the same. They've diagnosed him with Asbergers, which is a high functioning autism. I know what you're going through, and it's so hard to be patient with these special kids sometimes. I also know that the Lord has sent Jordan to help Aaron, just like He sent Sam to help Landon. Sam doesn't understand why we take Landon to therapy and he doesn't understand why Landon get so angry about the little things in life, so we explain that there are just some things that Landon doesn't understand and we've told Sam that Heavenly Father made Sam Landon's brother so Sam could watch out for Landon when mom and dad can't. Sam smiles and nods and now when Landon is having a hard time Sam tries to help with lots of hugs.

Good Luck!!! My thoughts are with you.

-laura

sarita said...

Oh Julie, you and your family are an inspiration!I love that this trial is bringing you and Paolo closer together and not driving you apart. You are a wonderful wife and mother and such an example!

su-tang 3000 said...

Just want you guys to know that we're rooting for you.