What I want for Mother's Day...

I know what I want for Mother's Day.  I don't want flowers, jewelry, or a new outfit.  I want the autism to go away for one day.

I want Nate, Nick, and Noah to be typical kids....just for a day....every year on Mother's Day would be great.  I would like to know what it's like to parent "typical" kids.  I'm sure I could do it...it can't be harder than what I already know....

I want Nate and Noah to talk to me.  Really talk to me...not reciting lines from their favorite episode of "Elmo's World" or Clifford".  I want to tell them the story of how Tim and I met.  I want to tell them how happy I was on my wedding day.  I want to tell them how I loved each of them the moment I found out I was pregnant.  I want to tell them how Tim was so afraid to hold them when they were first born...he said they were so small!

I want them to tell me if they're happy.  I want them to tell me what they like and don't like.  Does Nate like it when we call him "Naters?"  Why doesn't Noah like macaroni and cheese?  He's never even touched it.  Do they know they are different?  If so, does it bother them?

I want to be able to have a conversation with them about their futures.  I want them to know that I have a plan.  I want them to know that the decision for them to not live at home forever was difficult, but I believe it's for the best.  I want them to know that they will always have each other (and Nick).  I want them to know that I will never stop fighting for them.

Embrace it....Own it....

If your child is developmentally delayed, embrace it.  Don't try to cover it up, accept it.  After you accept it, own it.  That is who he/she is.  Now your job is to make sure that they get the best and most help they can.

If you have health insurance, call and ask about your home health benefits.  With these benefits, the boys are receiving Speech Therapy and Occupational Therapy in home and without a co-pay.  All it took was a prescription from the pediatrician.  The office faxed it over to a company I found in our area and the therapy company took care of the rest.  I found out about this when I called to ask about my benefits for the Autism Bill.  I just happened to ask the customer service representative "what else do I have?"  It may only provide with 20 visits a calendar year, but that's perfect for the 12 weeks of summer when they are only in school part time.

I also use our Department of Mental Health case manager.  Every state has this is some form or another.  Look up Department of Mental Health in your state.  The wheels in the state machine move very slowly, but I have received help there.  You just need to call now.....not in a few months.....There will be a lot of paperwork to fill out....I usually fill it out with a carton of ice cream and a spoon (no bowl needed).  Just do it...you are a taxpayer...your kids deserve the benefits.

Find activities in your area for special kids.  We are lucky to have one in St. Louis, TASK (Team Activities for Special Kids).  They offer a variety of sporting and leisure activities.  So does ARC (Association for Retarded Citizens)...I know they need a better name.  Through these organizations, my boys play soccer, t-ball, bowling, kickball, attend cooking class, and attend overnight camp all with kids just like them.  For once, they are not the minority.  They are with their peers.  Also, if your child attends a camp for typical kids, the camp may be required to provide staffing to help your child be successful.  We found this through the Recreation Council.  This enabled Nick to attend a camp when he was younger.

Also, look into the Americans With Disabilities Act.  Because of this, my boys pay admission to many places, but their care giver does not.  I remember the neurologist telling us to take the boys out, "They will gain something from every outing."  This allows us to send them to places that charge admission, but helps financially by not paying for the staff member.  I usually call ahead to places and when I mention ADA, they are more than happy to help us.

Finally, there is no shame in your child attending a school for special kids.  It may seem scary at first, but they can be great places.  Sending Nate and Noah to the self-contained school in our area is the best thing we ever did.  They are in school with their peers.  They do not stand out...everyone in that school is a special kid.  They do great things.  There comes a time when you need to decide what is more important, life skills or academic knowledge?  Tim and I have always tried to be realistic about the boys.  They don't need to know the Presidents of the United States, but they do need to be able to operate a microwave.  In s special school, these life skills are very important and taught in a wide variety of ways.  The boys are seeing kids that their lives will be intertwined with, whether it's at an outside activity or further down the road at a group living facility.  We wanted to immerse them in their community.

I know it's a big job.....trust me I know.  Don't worry, you are stronger than you know......and you can always find someone who has already walked down this road.

Noah loves to snuggle

Noah woke up this morning, went to the bathroom, and came straight into my bed.  He snuggled right into me and pulled up the covers over his head.  He loves to snuggle.

Nate and Nick did not enjoy snuggle time.  Nick tolerated it better than Nate, but neither of them enjoyed it the way Noah does.  Nate actually did not like to be snuggled.  When he would cry, hugging never consoled him.  It often upset him ever more.  Even to this day, he does not like to be touched.  He will tolerate a hug, but that is all...he tolerates it.  Nick snuggled for a while as a toddler, but quickly outgrew it.

Noah's sensory dial is very different than his brothers'.  He touches everything and everyone.  If you are sitting on the couch, he will come in and sit rightnexttoyou.  He starts by sitting next to you, then he's leaning on you, and eventually he is on top of you.  He has always craved that input.  He responds well when the staff brushes him and does the joint compressions.  When he is laying with us in bed, he often maneuvers himself so he is under us.  He really likes the weight on him.

When Noah comes in the morning to snuggle, I know it's a sensory need and not an emotional need.  However, the mommy in me prefers to think it's emotional.......

World Autism Awareness Day

I've been very reflective today.  Not that I don't think about autism all the time.......Usually, when I think about autism, I'm bitter....and mad.  Today I am grateful.......

Not grateful for the autism......I'm not crazy....but grateful for the the help and support that the boys receive.  We wouldn't be where we are today without all that help.  We are lucky that we live in a city that has resources to help the boys.

 I feel sorry for the families who live in small towns and don't have good resources.  It must be so frustrating for those moms that know what help their child needs, but can't find it within a 30 mile radius of their house.  Maybe Autism Speaks needs to create an outreach program to help these families.

I am grateful that Nate and Noah attend a school for special kids.  It's such an amazing place!  I feel sorry for the kids whose parents insist on keeping in the mainstream school when there are other avenues to consider.  Regular high school or middle school is not always the best placement for a child who will not be able to live independently.  I do not understand why some parents think that memorizing the President's of the United States is a better use of their child's time than learning life skills.  I know it's more expensive to educate a child in come special schools, but what happened to doing what's best for kids?  What will happen to that child when they turn 18?  I'm afraid the parents will not have done what is best for their child's quality of life.

I hope that soon the Autism Bill becomes a federal law.  It's a shame that families in Missouri who have a federal health insurance policy and not a Missouri policy do not get the benefits.  I think it should be available to all families in the United States, regardless of their insurance carrier.

We are so lucky to have Team Hill!  We have 11 people who care about the boys and work very hard to help them reach their goals.  Yes, the autism sucks, but the people who have helped us throughout the years have been amazing.  We are lucky to have them.  Let's hope that all families affected by autism have such a team.

Another hoop

A few weeks ago, our DMH case manager decided that to put Nate on the waiting list for the Lopez Waiver (the same one Noah has).  This decision was made due to Nate's increased aggression and his hours being cut by the insurance company (that's a whole other issue).

In order to apply for the Lopez Waiver, I must apply for Medicaid (again) and be denied (again).  Has anyone seen the paperwork??  Why can't they just pull up our telephone number and see that we were already denied once so we sure will be denied again??  This is just ridiculous!  I am so tired of filling out paperwork.

I don't understand why people make things so difficult for some of us who already deal with difficult every day.  How about making things easier?  Just come to the house, watch one of Nate's meltdowns, and make the decision.  Someone must think that I sit around on my ass all day and eat chocolates.  I surly have a lot of free time to fill out a four page application for something that I will be denied.  

I am filling out the paperwork......ugh......

By the way, hula hoops are the only type of hoop I want to deal with.

Nate is 15

Nate is 15.  We have had his diagnosis for 13 years. 13 years ago I started to mourn the loss of the child I would never have. 

Nate should have his driver's permit. 
Nate has not had a first kiss.
Nate has never had a sleepover.
Nate has never played a team sport.
Nate has never gone to the mall with his friends.
Nate has never had his heart broken.
Nate has never ridden a bike.

I am still mourning. I am still angry. I am still jealous of all my friends who have typical children. 

PJHS

A couple of weeks ago, I visited my previous place of employment.  It was so nice to visit with the friends that I haven't seen in a very long time!

As I was driving home, I realized that these people helped me get through getting Nate's diagnosis and the first 15 months of therapy.  They were so patient as I cried and wondered how we would get through this.  They offered many hugs and words of encouragement.  They listened while I described every therapy and cheered for every bit of progress, no matter how small.  

It was a difficult decision to leave PJHS.  However, working closer to home was best for my kids.  I think of these friends often and hope they know how grateful I am for their support and friendship.  I don't think I would have survived that first year without them.