Monday, April 15, 2013

Living With Asperger's



For us stacking 4 empty boxes, standing up, and then walking to the trash would be easy.  My daughter had a really tough time doing it the other night. 

This is a different kind of post for me.  Normally I talk about me, what I'm up to, or new projects.  Today I will share a little bit about my family. Like I've told you in recent posts I've been dealing with "the system" with my daughter.

Just to catch some of you up if you are new my daughter was diagnosed with ADHD at the age of 6.  I was always told she would begin to outgrow it when she reached 6th grade.  You have no idea how frustrating those years were.  We, she and I, had tears during our 3+ hours of homework each night.  She was failing tests but passing on her homework. Mind you she is mainstreamed.  She had a hard time putting her coat on, she would smile when we were disciplining her (talk about shear frustration), and she was unable to follow more than one step directions, she had total meltdowns, and would not look people in the eye.  As a Mother you know your child! I knew there was something else going on. She was not outgrowing her ADHD.  So, I turned to the schools for assistance.   The school system we were in refused to test my daughter for an IEP (individual education plan) I was told that I was "an overprotective parent" while her math teacher patted my hand.  I just needed to let it go.  Me being me I did not give up! I knew there was something else. Long story short I had to involve a child advocate from the state of Ohio, pay for additional testing out of my pocket, get irate at her meetings to the point they had to have the school police officer in on my meeting, bring my child's psychologist to my meetings, and have noted written by her psychiatrist and family doctor.  Still the school said they didn't have enough money to help and that she didn't need an IEP. At this point I now had new diagnosis of Asperger's (an autism spectrum disorder that involves the person having social issues) and a non-verbal learning disability.  They refused to accept the diagnosis.  My last meeting with school involved the statement "You better believe I will be moving out of this school district and taking my kids elsewhere." We put our house up for sale on a Friday and by Monday it was sold.  God was on our side. :-)  I also learned, after the fact, that my child was being bullied at that school and nothing was being done.  My child walked around with her head down just hoping no one would see her and that she would just blend in.  She never really had any close friends.  The ones that were supposedly her friends were the ones bullying her.

Skipping ahead to the new school district... Second day of school of 7th grade I received a call from the school psychologist advising me that we needed to set up a meeting that my daughter needed help.  Tears began streaming down my face as I spoke with her.  She apologized stating she didn't mean to upset me.  I told her these were tears of joy.  Finally someone recognized there was something going on!  This school did a fantastic job of testing and coming up with an awesome plan to help my child succeed.  My kiddo just needed  to learn a different way.  She is not dumb... in fact she is just the opposite.  The information that she has stored in her brain is amazing!  It was determined that she was less developed in math and language arts (English to you and me). lol. So, the best place for her was in the learning disabled classes for those subjects.  Other things were put into place to help her learn, prewritten notes for class, extended time on tests and taken in a different room with no distractions, less homework, organization help, and additional help in her mainstream classes if needed.  These simple things have been left in place each year though updated every year with new goals.  By high school I had a totally different kid.  The child who put her head down and not look at anyone was now singing solos in the school talent show, she was in the cast for the school musical, choir, and Earth Science club.  I don't know about you, but I could NOT do that! lol She was getting A's and B's and liked going to school.  Once sophmore year came the decision was made that she would go to the career center here in our county for the last 2 years of school.  My tears once again flowed down my cheeks.  So many questions and concerns.  Would she succeed? Would she adjust? Would the kid's make fun of her? Would she regress? It's a totally new environment and all new people it is a different schedule! If she gets off her schedule then meltdowns happen. Oh my gosh is this the right decision?!?!?!? I was more worried than she was.  But you have to let your child spread their wings no matter what.  I had in the back of my mind well, if it doesn't work she can always go back to the high school.  I had always protected her i.e. sheltered her and made decisions in her best interest.  (which by the way is the hardest thing to not do with a child with disabilites).

Junior and Senior years... my daughter had decided on taking the program Interactive Media.  Mainly it deals with computers, making public service videos, learning about websites, and projecting images on green screens on TV.  I know there was a lot more to it, but she would have to explain it to me. lol. The first few days were the worst for me.  I wondered if she would find her classrooms ok, be able to control her meltdowns when her anxiety kicked in, would she find friends??? once again this kid amazed me.  She LOVED the career center. She still loves it to this day and has told me numerous times she is so glad I let her go.  Though to my displeasure my baby girl was growing up. This thought entered my brain almost everyday.  What will she do when she graduates? Will she be able to find a job? There is no way she can go to college as she still can't cross a street very well, she can't tell time so she won't know when to go to class or go to eat, she still can't use a stove or oven very well, she can't follow recipes, can't make change or no how much change she needs to get back, she can't follow multi step directions, can't button buttons as she doesn't have a lot of fine motor skills, can't go into a store to find items she needs, definitely can't drive as she doesn't have good judgment skills, and she still can't stay at night by herself.  Her anxiety levels are extremely high!!!  She is a hypochondriac, worries about getting soap in her eye it will cause blindness, if she uses household cleaners she afraid she is contaminating things with the cleaner which will harm us if we touch the surface of a faucet handle then touch food, if she hits her head she thinks she has a head bleed, she sits in her room with the door shut and curtains pulled closed, windows shut because someone may see or hear her music or TV.  If she is the last one to leave the house she has to call or text me to see if she should shut off all the lights.  She smelled smoke one night and panicked.  Our neighbor smokes and the smoke drifts into our house.  She texted me at work to say she was leaving the house and going outside because she smelled smoke.  I tried to assure her it was the neighbor and told her to check it out before she left the house.  She had no idea what to do  so I had to talk her through every step.  Needless, to say it gets very frustrating on my part.  Can you imagine thinking what will happen to my child when she turns 18? I can no longer make decisions or protect her.  What if something happens to me?  She will live her Dad, who has not ever helped with her care and still believes there is nothing wrong with her.  I needed to do something.  But what?

After talking with many people I decided to give the county board of dd (developmentally disabled) a call.  I explained my situation and they agreed that an evaluation was needed.  However, at this point she was 15 and would be tested as a child, so it was decided to wait until she turned 16 to test her as an adult.  The case worker came to my home and did the evaluation and left mounds of paperwork with me.  She told me that she was so high functioning that she didn't feel my daughter would eligible.  Uggghhhh a huge kick in the gut!!! Now what!?!?!? I went into panic mode.  She said she still needed to enter the information in the computer and she would get back to me in a few weeks.  It was like waiting for Santa to come as a kid.  Finally, the letter came... it said that it was found that she was indeed eligible for services through a Medcaid waiver.  WOOHOO!!!!! relief.... little did I know the red tape I would be getting myself into. I believe they do this on purpose so people would just give up and say forget it.  The first decision to be made was whether my daughter wanted to accept the waiver.  If she accepted it she could not continue to go to school after graduation.  It was either get a job and the waiver or go back to the career center for two more years. I let my daughter make the decision and she decided on the waiver.  This meant more paperwork, evaluations, and leg work.  This all started around November of 2012.  I got so frustrated with it all... I would be told one thing then come to find out it wasn't the right thing and had a deadline of a few days to get the right thing done.  My daughter had to be approved for Medicaid.  That was the hardest part of everything.  The lady at job and family services would not return my calls, would set up phone interviews then not be there when I called, and then took forever to process things when the deadline was near.  At first my income was not to be used.  Then of course it was.  Of course I have to work my butt off to make ends meet it looked as though my income was too much.  They said she was ineligible.  So I called the case worker.  The case worker said that she had to be approved because she was approved through them.   Eventually she was approved with a spend down of $1083 a month.  If you don't know what that means it means I would have to spend that amount each month in medical care before Medicaid would pick up.  The case worker at the board of DD said that she had never seen a spend down that high before and didn't believe it.  Let me tell you I would never hit that unless someone was hospitalized.  I was mad!!!! I began to wonder if this was worth it.  I just know I can not continue to support my daughter by myself without child support come graduation this Spring. So I trudged on.  We still have no idea if she will be able to hold a job with her disabilities, but she has been meeting with a job placement specialist.  After she turns 18 in June he will help her find a job.  They are currently working on her resume.  He has many contacts in different companies and will try to point her to one that he feels she will fit.  If she gets a job he will go in and learn her job then stay with her for however long it takes for her to learn the job.  They will work out any bugs like knowing when she needs to go to lunch, quitting time, starting time, and transportation to and from work.  What a huge relief!!!! She will also get help learning how to cook, go to the store to buy things she needs, if she chooses help getting her driver's license, basically any skills she is lacking they will pay for those extra services through Medicaid.  The idea is to get her to the point of living on her own.  The case worker and job specialist came to my home on Tuesday to finalize some plans since she will be graduating in May.  It is still so hard to believe and is still very scary for me!

That is where we are as of today.  I will post a few things as they come like prom!  Yes she is going.  She even asked the boy!  The child who has social issues took the bull by the horns and did it. :-)  My daughter is also 13th in the a class of 123 students and getting straight A's.  People ask me for advice on how to handle a kiddo like this.  The first thing is have patience!  Oh have I lost my patience many many many times over the years.  I still lose my patience because I sometimes don't understand why she can't understand and grasp something that seems so simple.  To describe time to my daughter is to ask you to explain the color red to me.  She just doesn't get it.  Be an advocate... no one will ever advocate for your child as well as you do.  My daughter would not be where she is without this old stubborn girl!  Search for programs, ways to get your child involved and socializing, make them do things that are uncomfortable to them like ordering off of a menu at a restaurant.  Don't over protect them.  I admit I did which she now uses her disability as a crutch at times.  Let them learn lessons the hard way by not succeeding in everything.  Again there were times I didn't do that and now she is self defeating and thinks she can't do it before she tries. Encourage and love them for who they are because it is very hard for them to change.  Don't feel like you have to explain to anyone that your child has autism and that is why they are acting the way they do.  Don't get me wrong there have been instances where I do have to explain like when we went prom dress shopping.  Every autistic child is different.  What works for some doesn't work for everyone. Take breaks.  If there is someone who can take your child for a few hours utilize them.  I get so tired and need a break sometimes her.  Does this make me a bad parent? No! It is difficult to work two jobs, craft for extra money, and keep a household running. So please don't feel bad to ask for help.

Well, now that you are bored with my long post.  I hope it gives insight why I have been absent.  I'm still working on things for her but I now have hope!  If anyone has any question please feel free to email me.
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13 comments:

Karen said...

What a beautiful post...now I don't mean about what you and your daughter had to go through with all the Red tape over the years - but beautiful from a mother who loves her child and did everything in her power to get the help she needed.
If a mother doesn't grab the bull by the horns it's certain NO ONE ELSE WILL....
I commend you and bless you and you have a beautiful daughter who is growing into a beautiful young lady and for sure you had better post those Prom pictures.
With love and hugs,
Karen

annie said...

Mary, this is very touching, you must be so proud of her grades, and how far she has come. Thank God for good Moms like you who go the distance for their kids. Bless you in the night when tiredness, fatigue, and doubts try to bring you down. Rest as you are able, pat yourself on the back for not giving up, and remember how very blessed you both are to have each other. If ever anyone deserves the honor of being called "MOM" it is you! hugs!

Raymond Homestead said...

You and your daughter have certainly been through a lot and have both managed to handle it all very well.
What a great mom you are. You have done and continue to do what is best for your daughter. She is very lucky to have you.

Anonymous said...

Your post was just what I needed to read today. Thank you for sharing part of your family life. As parents, we are always wondering if we're doing the right thing where our children are concerned, and it can take forever to see the results of our decisions. Thank you for reminding me to keep my eyes on the prize. Blessings!

Robin at The Primitive Hutch said...

Kudos to you and your daughter for everything you've been through and accomplished. I totally understand my sister has learning disabilities it's a long road to travel.
Many Blessings to you both.
Robin

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bettyj said...

Having worked with Sp Needs for almost 30 years, I am appalled at the first school system! Appalled. Lots of aspergers go on to careers. Actually some become doctors or lawyers. No bed side manners but brilliant about what ever they practice. I am so happy your daughter has you as an advocate. However, remember Mary, it is normal for children to grow up and leave home. She will do well whatever/wherever she goes/does because you have seen to that. I an going to follow you and see your other posts. I LOVE success stories. The county/state I live in has apartments for people to live in with an overseer. Several of my friends children have done this successfully. They weren't all autistic either. They have run the gamut of all disabilities. They are happy and doing well. May wear a sweat suit in July, but hey, they chose too. I loved this post as I have known wonderful Mothers like yourself.

Jacquie Wheeler said...

Beautiful post!! Bravo for never backing down and always being your child's loudest cheerleader!

Anonymous said...

What a wonderful Mother you are. My daughter is a MRDD teacher and she sometimes is so upset by parents who do not do all they can for their children..I am sending her your post and I know it will make her sad for all the trouble you have had but she will rejoice for your daughter because she will have a life..SANDI

jennifer768 said...

God Bless you and your daughter.I am so proud of you for standing up for your child.I hate it when others say that there is nothing wrong with a child.No one knows and understands a child better than it's mother.You are wonderful mother and an inspiration to all.Thank you for sharing your story.Hugs,Jen

Anonymous said...

YFeah! to you and your beautiful daughter. I really like it when people tell it like it is. There are several blogs that are so braggy and "perfect" it makes me want to hurl.
They are so wound up in themselves they don't realize how insensitive they are to others.

What a long road you've come through, I'm saying a prayer for you and your daughter.

A Primitive Homestead said...

Over time I have read your blog in ups and downs. Real life. I have been amazed by your over coming many struggles as a single mom making a home for her children. This post sheds even more light on your life. Your so right. If you don't fight for your children no one else will. A mother knows her children. Some would have given enough up long ago and left it to the school to let your child fall through the cracks so to speak. Her father is missing out on an amazing child. Blessings! Lara

Kathleen Woodbury said...

Mary, you are some kind of awesome lady. I've been reading your blog for awhile now and like you because you are real and because you share yourself and your life with us so we know you have had many trials and tribulations over the past few years, but you keep moving forward with a positive attitude. Know that God loves you and wraps his loving arms around all that you do.