Sometimes Helpless

I have been spending the last few weeks writing letters.  Letters to the state trying to appeal the school district’s decision to not assess TJ for an IEP.  Letters to our insurance company trying to get them to cover TL’s occupational therapy.  Letters upon letters upon letters.  I am doing my best to get my boys what they need, but I still feel helpless.

I don’t feel like I can really help my boys.  I tried, unsuccessfully, to teach them both to speak.  They both needed therapists in order to accomplish that.  I try to understand the head banging, spinning, and thrashing, but I need occupational therapists to explain why my boys are doing that.  I try to teach TJ how to read social cues, but he just doesn’t get it.  He needs more.  They both do.

At times, I have 6 different professionals telling me what to do to help TL.  That’s 6 noses in my business, in our family, in our home, telling me how to raise my son.  And people think the “suggestions” from in-laws are intrusive!

Sometimes, autism just paralyzes me.  I second guess my mothering skills.  I throw my hands up in disgust.  What can I do to help my boys?

I can fight.  I can be their voice.  I can be their advocate.  I can…write letters.  And I can make phone calls and I can research special education law (not an easy task, but I’m up for it).

But is that all I am for my boys?  Am I just the mommy warrior?  Sometimes I feel that way.  Then, Saturday night, I get an email from the supervisor on TL’s therapist team.  She wrote:

You have been so incredibly supportive and patient throughout the months and the sometimes not so smooth transitions and glitches on our part! It is so nice for the therapists to be able to work with a mom who is so dedicated and kind. Until I'm a parent, I don't think I'll be able to fully appreciate the toll [TL’s] therapy, OT and preschool schedule must take on your family, but it is clear to see you somehow manage it all as [TL] is always happy, serene and ready to go!! It is always wonderful to see this!

I do that?  I make it is easy for them?  For him? 

I may not be able to take a hands-on role with my children’s development—that may have to remain in the hands of the professionals—but I help to keep all this running.  I help make sure the boys get their downtime, their mommy time, their daddy time, their brother time, their social time, their church time, and their therapy time.

I couldn’t do that without God.  In the words of Apostle Paul:  “I know what it is to be in need, and I know what it is to have plenty. I have learned the secret of being content in any and every situation, whether well fed or hungry, whether living in plenty or in want.  I can do everything through him who gives me strength.” Philippians 4: 12-13.

In Retrospect: Looking back to move forward

Whenever you look back on your life, you can see all the mistakes, all the missed possibilities, all the what-ifs.  It is easy to nit-pick and question everything when you look back—like I did today.

We are trying to get TJ an IEP.  It is our 4^th try since he was “graduated” out back in preschool.  Back then, we were told he was past grade level with his speech and there was nothing more they could do for him; he didn’t need special education anymore.  Nothing more they could do, ha!

Anyway, we were young and inexperienced in special education.  We had not been jaded yet.  We figured the professionals knew best and that they were truly doing what was right for him.  He was mainstreamed that next fall into a traditional kindergarten. 

His year started off bad and progressively got worse.  His teacher was not at all understanding about his problems and said demeaning things in front of him.  She said he could not cut, could not color, could not write.  He heard all this and started to believe it.  He started self-injurious behaviors and we started having him see a private therapist.

We tried to set up a meeting with the principal and the teacher, but when we got there we were ambushed us with a behavioral plan meeting.  They really were not looking out for his best interest.  We immediately pulled him out of the school and I homeschooled him until we found another placement—preferably out of the district.

That ended up being a private Montessori elementary school that was way out of our financial abilities.  Going more and more into debt each month, we were hoping this school would be the answer.  After all, Maria Montessori developed the educational approach specifically for special needs children in Italy.

Boy, were we wrong.  TJ was bullied at the school.  TJ was sent home early many times for disruptive behavior.  TJ was not allowed to be evaluated for moving up to their 1^st grade class because they didn’t think he would be a good match.  TJ was not allowed to go on the kindergarten graduation field trip.

We tried to go back to the school district and ask for an IEP, but we were turned down.  Why?  Well, they knew how to play us…they told us that all his behaviors were because he was gifted.  They showed us charts that put his IQ off the charts and told us that the private school just didn’t know how to handle his advanced educational needs.

What parent doesn’t want to be told that the only problem with their child is that they are too smart?  It was the perfect way out for them.  Don’t get me wrong, I know my son is smart (both of them are), but his behaviors were from more than just being unchallenged.

Anyhow, unable to continue at the private school, but we were able to convince them to let him “graduate” from their kindergarten class.  We ended up looking back at what our district had to offer.  We decided on a Montessori magnet school our district has.  We figured the unstructured model of Montessori and the educational standards of a public school would be a good match for TJ.

The school did work out fairly well for TJ, but there were issues along the way and we tried 2 more times to get him an IEP.  There was always another reason why he was “normal,” “testing fine,” etc.  We did end up getting a 504 plan last year, but an IEP was always the goal.

But with TJ being in middle school, the stakes have risen.  Middle school is a social quagmire that has to be carefully navigated by even the most social adept.  How would TJ survive?  It didn’t take long to figure out. 

On the 2^nd day of school, his best friend from elementary school told him they shouldn’t be friends anymore.  He did it just as TJ was coming over to eat lunch with him.  TJ was shaken.  He went off to eat lunch alone and ended up falling and hurting his ankle.  I wondered if the kid was snickering when that happened, but I didn’t want to torture myself too much with the possible scenarios.  He is still eating lunch alone.

Luckily, I put in the request for an IEP a few weeks before school started.  The timeline mandated by law would ensure his testing would happen as soon as possible after school started.  And today, I got a phone call from the school psychologist.  She is reviewing his files and putting together the assessment plan.  She wanted to know my concerns.  I have had these phone calls before and they usually seem neutral or unfeeling.

This one surprised me.  She was shocked he let out of speech when he was 4.  She said a lot of our concerns could be linked to a need for pragmatic speech therapy.  We had dreamed of someone else thinking he needed that!

Now, we are still in the early stages of the IEP process, but I feel a little cautiously optimistic.  Maybe they will finally see what TJ needs.  Maybe he will be given the tools necessary to lead a relatively normal life.  Maybe, just maybe…

Building Blocks

When someone is talking about “the building blocks” of something, they are usually referring to the framework or foundation.  This is an obvious reference to the blocks that children learn to build with.  It’s not just a metaphor for me now, though.  On Thursday, I saw how real building blocks can be the foundation for TL learning to connect.

TL has a set of wooden building blocks that we bought specifically for his ABA therapy.  They are kept in his ABA box and used only during his sessions as “reinforcement” for completing a task.  Well, Thursday he had back-to-back therapy sessions and the materials were left out for the next therapist.  She was running a tad late and I was trying to keep TL from destroying the binder of paperwork they keep in there. 

I offered him different things in the box to play with and he picked the building blocks.  I took them out and instinctually began to build stuff with him.  This was the first time—yes, the first time—TL and I had ever played with the building blocks together.  At first, he didn’t like anything I was making and would knock it down.  Then, I made a “fire truck” from the red blocks.  He loved it!  I started to really get into it and feel like I could play, actually play with my son. 

I was so disappointed when there was a knock on the door and the therapist started her session.  We connected and played so well.  I never wanted it to end.  It is those simple moments that make it all so worthwhile.  All the appointments, reports, schedule changes, and house invasions (AKA in-home therapy)—all worth it, because we connected.

My day was doubly blessed after dinner that night.  The boys pretended they were horses and raced from the dining room to the living room on their hands and knees.  They pretended they were airplanes and ran around the house with their arms out, making plane sounds.  They connected.  They might be 8 years apart and be on the Autistic Spectrum, but they connected.

Those are the building blocks for TL.  He is learning to connect.  He is learning to use his imagination.  He is learning to interact.  He is learning.  He is progressing.  There are definitely setbacks, like Friday’s therapy where he threw items around the room, but he is consistently moving in a forward direction.

What more could I ask for?

Walking By Faith: Part 2

Sometimes I can totally relate to Peter:  “Cool! I’m walking on water!  I’m walking on water!  Oh, no!  I’m walking on water!  I’m going to fall!”

I forget that God has done some amazing things in my life.  He gave me my boys, which I could never thank Him enough for.  He gave TJ the therapy that helped him and the strength he needs to get through all these years of appointments.  He gave us the wisdom to know what to do for our sons and the strength to get through each and every day.

I forget how God has led us on a spiritual journey this summer and guided us to find our new church home (thank you to all those that have been praying for us on this subject). 

I forget.

Lately, it has been too easy to forget.  I have gotten some news about my health that has crippled me with fear.  It is nothing dire and it is something I can change, but for awhile, I felt paralyzed.  I was sinking like Peter.

I have wanted to give up.  I told myself, “Amanda, you tried this before and nothing ever worked.”  It’s true, I tried.  But I need to give up control and let God take the reins.  I pray that He gives me the wisdom to make the choices that are best for my life and that He gives me the strength to keep moving forward.

How can I do anything else but put my faith in God?  I look around every day and see His hand in my life.  My sons can speak.  They couldn’t do that without Him.  TJ is going into middle school, in regular classes, with friends who don’t even realize he is autistic.  That is God.  TL is learning new things everyday and has a smile a mile wide.  That is God. 

Why would I think God would fail me now?  He won’t.  I know, because I am walking by faith.

Dared To Be Spontaneous

Being spontaneous with two boys on the spectrum is very hard.  They need to be front-loaded (told what’s coming before it happens).  They need schedules, calendars (I can’t count how many trees have been killed for the sake of custom calendars in my house), and routines. 

But we threw caution to the wind Sunday night.  It was a hot day and our house was not cooling down much—it was looking to be a sweaty summer night.  It had already been a difficult day, starting off with us leaving church early because TL couldn’t handle the special all-church service we went to (with no childcare—yikes!).  Everyone was cranky and everyone wanted to get out of the oven we called home.

So, at 9 that night, we booked a motel online in Watsonville, a coastal/farm town about an hour away.  We packed up the bare essentials and took off driving.  Our oldest, TJ, was bouncing-off-the-walls excited.  He always sees his favorite characters on TV go on trips and had grand ideas of what the next 24 hours would be like.

TL, though, was definitely thrown.  He didn’t know what was going on and had never spent a night away from home.  He usually loves the drive through the Santa Cruz Mountains, but the nighttime view can be a little spooky.  He told us he was scared (this was a BIG thing for him to recognize emotions) and my husband held his hand until he felt better.

We got to the motel…and we soon wished we had done a little more online research.  It was a mom-and-pop place that was a bit rundown.  We didn’t feel completely comfortable, but it was free of bugs and generally clean, so we stayed the night.

Then came the night of regret!  TL did not crash out until midnight (really wish he would have fallen asleep in the car) and TJ was tossing and turning until 3am.  I had insomnia (I am never good at sleeping in new places) and didn’t knock out until after TJ.  The whole time I wondered if we did the right thing.  I kept waking up my husband (he could sleep ANYWHERE) and venting.  He shared my concerns.

Following this “night of regret,” was the morning of possibilities!!!  TL woke up at 7:30 and was snuggled up next to his brother.  He crawled into our bed and slept for another hour or so.  We had a little of the complimentary “breakfast” the motel offered and then ate a complete meal at McDonald’s.

Then, we planned out what we were going to do and promptly threw it all out.  We wanted spontaneity and we were determined to get it.  We decided to go up Highway 1 and hit some of the coastal towns.  We saw a lot of Independence Day Parades in these small towns, but decided not to stop for them. 

Instead, we headed for Sea Cliff Beach.  We walked along the beach, checked out the cliffs, and waded in the water.  My husband held TL and let him touch the water.  He loved it so much that as we were leaving the beach, he kept asking for “more touch.”  Then, we got to check out their awesome gift shop that even has an observation pool filled with sea creatures.

Hungry, we began to search out lunch.  We stopped in different towns that we had always wondered about when we drove by, finally deciding on Scotts Valley.  We ate at a great little diner and enjoyed the cool breeze on the patio.

It was time to head back home.  The boys might have had a rough night, but their day was fantastic.  They loved every minute of the adventure and were completely exhausted when we got home—we all needed naps.

What did we learn?  Well, spontaneity REALLY is hard with two autistic kids…but not impossible.  It required a lot of patience and understanding, but I wouldn’t trade our overnight vacation for anything.  Camping, Disney Land, and time-shares may not be in our future right now, but they are not out of the picture forever.  We just have to dare to be spontaneous every now and then!

Article Makes it on Yahoo! News

My article made it into the news section of Yahoo!

http://news.yahoo.com/guide-finding-special-needs-ministry-san-jose-area-192400618.html

Mad at Autism

I really do try to be understanding to my boys.  I try to be understanding about autism.  I try to be understanding about their behaviors.  I do try.  But there are some things that just throw me.  They seem small at first, but when they sink in they rock me to the core.  Like today.

My youngest, TL broke his sandals tonight, so we needed to go out and buy him new ones.  It had to be tonight because he has therapy tomorrow and then goes to school.  We decided to walk as a family to a shoe store about a ½ mile away.  We put TL in his stroller and went on our way. 

After going through millions of pairs, we found the one for him.  We paid for them, put the box under the stroller, and started home.  About halfway home, my husband realized that TL had been dragging his foot on the street and sidewalk.  He had worn a hold in his sock and cut open his big toe. 

Why did this throw me?  I mean he just dragged his foot.  No big deal, right?  The big deal was that he didn’t feel it happening.  Something that would make you and I limp home was nothing to him.  How far would he have gone like that?  How big of scar? 

He probably didn’t notice because he always toe walks.  This wears down his toenails and toughens the skin on the tips of his toes.

I started crying on the way home.  I don’t even know why.  Maybe it was the fact that he didn’t realize he hurt himself.  Maybe it was the fact that he needed that “sensory input.”  Maybe I was just mad…mad at autism.

Gosh, how many years have I seen these things that autism does?  How many years of therapies, IEPs, books, articles, assessments, and explanations?  And still, I am mad at autism. 

I know I will feel better later.  I will try to look at the blessings my boys are.  But, darn it, right now I am so mad at autism