This originally came from Ellen at To The Max, but I found it through Big Blueberry Eyes.  Ellen wrote it as a tribute to her son Max.  It is fantastic and very accurate!!  Even if you are NOT a parent of a child with special needs, this is a window into my life.  Thank you Ellen for your wonderful words and your permission to pass it on, and thank you Michelle for passing it on.

Special Needs Parent’s Bill of Rights
We, the parents, in order to form a more perfect union, establish justice, insure tranquility (and sanity) and promote the general welfare of our families, do ordain and establish this Bill of Rights.
* We have the right to expect our kids to be seen for who they are as individuals, not as labels or diagnoses.
* We have a right to trust our instincts about our kids and realize that experts don’t always know best.
* We have a right to ignore the remarks, questions and stares and not give explanations or excuses for why our children are the way they are.
* We have a right to choose alternative therapies for our kids.
* We have a right to roll our eyes straight out of our heads when we encounter certain mothers who brag nonstop that their kids are the smartest students/best athletes ever.
* We have a right to wonder “What if…” every so often.
* We have a right to play aimlessly with our children. Not for therapeutic or educational purposes—just for fun.
* We have a right to blast Bruce Springsteen/Tom Petty/Any Rocker, down a glass of Pinot Grigio, get a pedicure, go out with the girls or do all of the aforementioned at once if that’s what it takes to avoid burnout.
* We have a right to react to people’s ignorance in whatever way we feel necessary.
* We have a right to not always have our child be the poster child for his/her disability and some days be just a child.
* We have a right to go through the grieving process and realize we may never quite be “over it.” * We have the right to give our kids chores. Even better if they can learn to make breakfast in bed for us.
* We have a right to stretch the truth when we fail to do the exercises the therapist asked us to do this week because we were too darn tired or overwhelmed.
* We have a right to have yet more Pinot Grigio.
* We have a right to fire any doctor or therapist who’s negative, unsupportive or who generally says suck-y things.
* We have a right to tell family and friends that everything may not be OK—at least not how they mean it, anyway.
* We have a right to hope for an empty playground so we don’t have to look into another child’s eyes and answer the question, “What’s wrong with him?”
* We have a right to bawl on the way back from the playground, the birthday party, the mall or anyplace where our children’s challenges become glaringly obvious in the face of all the other kids doing their typical-development things.
* We have the right to give our children consequences for their behavior. They may be “special” but they can still be a royal pain in the butt.
* We have a right to take a break from Googling therapies, procedures, medicine and treatments for our kids to research upcoming concerts, exotic teas or anything not related to our children’s disabilities.
* We have a right to talk about how great our kids are when people don’t get it.
* We have the right to not always behave as inspirational icons who never complain or gripe about the sometimes awful realities of raising a child with special needs.
* We have a right to expect quality services for our children not just when they’re infants, preschoolers and elementary school age, but when they’re in older grades and adults, too.
* We have a right to adequate funding for those services and to not have to kick, scream or endure a wait for them.
* We have a right to get tired of people saying, as they give that sympathy stare, “I don’t know how you do it.”
* We have a right to wish that sometimes things could be easier.
* We have a right to cheer like crazy anytime our children amaze us—or weep like lunatics.
* We have a right to push, push and push some more to make sure our children are treated fairly by the world.

My Sydney Bean ate beans for breakfast (we had Migas… yum!)  BTW, Without words she made it perfectly clear that

“I can do it MYSELF!!”

Sydney used to be MY little girl, but at some point about 6 months ago she became a total daddy’s girl.  She shoves me away and drops me like a hot potato for her daddy.  Frankly it stinks.  In the last week she is feeling MUCH better!  Thank goodness.  One of the new molars has fully broken through… now just three more to go. =0)   But back to my point… she is really having a hard time with me leaving her.  For the last 23 months, she has been fine with me leaving her with anyone.  She has becoming a little more shy lately and this last week she has cried when I left her in the Nursery at church and with a sitter.  She even cried tonight when I walked out of the church nursery and she was sitting on her daddy’s lap. =0(  It broke my heart to look back and see her reaching her arms out to me and listening to her cry.   (Is it wrong that a little part of me smiled inside and thought “She loves me… she really does love me”)

Yesterday I got the pleasure of giving a workshop on creating Inclusive Congregations at the Texas Parent to Parent conference here in Austin.  I teamed up with Deanna Boggess who is the Special Needs Ministry manager/trainer for the Hill Country Baptist Church (HCBC) also in Austin.  We had an hour and a half presentation on how to start Special needs ministries.  I have such a passion in my heart for this subject.  I want to talk to every church about not only accepting, but welcoming in all people with special needs.

Did you know that the official statistic is that 1 in 5 Americans has some sort of disability?  Just think about that for a moment.  1 in 5.  The term disability or special needs is very vague and broad, therefore don’t you think that God wants his congregations to open their arms to 100% of his flock, not just 80%?  I have been collecting scriptures that are crystal clear of God’s view of special needs, so why is it that so many of our kids are turned away?  Why is it that adults who need a little more are just pushed out or aside in our churches?  There are so many stories of people that I know who have been told that their child can no longer be included.

 ¹As he went along, he saw a man blind from birth. ²His disciples asked him, “Rabbi, who sinned, this man or his parents, that he was born blind?”

 ³“Neither this man nor his parents sinned,” said Jesus, “but this happened so that the work of God might be displayed in his life.  (John 9:1-3 NIV) 

I have taken the Special Needs training at HCBC and it is amazing what some training and a little extra effort can do.  I have witnessed the DSACT’s Inclusion Works program that teaches elementary school teachers how to teach children with Down syndrome.  The teachers have come back raving about the learning’s in the training and manual have helped ALL of their students, the children with DS, the children with other special needs and the typical children. 

Believe me, I realize that there are behaviors and physical limitations that are much more extreme and require a LOT of assistance and that there are some people that cannot be in the mainstream classrooms.  The HCBC has covered the gamut on special needs and is able to accommodate ANYONE who walks through their doors.  What a wonderful and welcoming place that must be.  Now, HCBC is a big church with 5000 congregants, but I attend a small Episcopal church out in the Hill country with 150-200 people and we do not have a large budget or staff.  That doesn’t mean that we can’t be Aware and ready for welcoming in all of God’s children.  That also means that with some awareness training, every church can be Aware and ready to do something in love rather than react in fear when someone comes through their doors and needs something extra.

I found my keys yesterday and I couldn’t be happier about it!  I lost them a few weeks ago and we have been “making-do” ever since.  My sweet hubby split his keys apart and we have been passing them back and forth depending on who was driving which vehicle.  I finally gave up a few days ago after tossing the house MANY times and decided to replace them… so after the thought of spending $300.00 in replacement costs for a programmed key/remote/labor (ARGH!) I resumed my search.  (darn you TOYOTA!)

Folks, I was desperate… I was checking purses and clothing pockets of things that I have not used or worn in many months.  I was even checking all of the jackets…. HELLO, it is 100 degrees out.  I was NOT wearing a jacket three weeks ago.  I was SO desperate to find the keys.  I checked EVERY toy bin, bedroom, box of “stuff”, purse, diaper bag, I even checked the pool table pockets and the bag of “green” grocery bags.  I mean, you NEVER know what child may have gotten a hold of the keys and “put” them somewhere.  I was on a mission to save my sanity.

Well… where were they,you ask?!?  I a diaper bag pocket that I checked about a dozen times already.  I got the brilliant idea to go back to the most likely places and dig DEEPER because I found a pocket knife in the lining of an old purse when I was searching through my OLD stuff in the back of the closet (because I just MIGHT have been sleep walking and put the keys in my Christmas purse, right?!?)  Yeah, I was THAT desperate!!  Sure enough, it was wedged down in a pocket,pretty much underneath the diaper bag in an outside pocket.  Here’s the kicker… it was hanging on a hook by the front door, ODDLY enough WHERE IT BELONGS!!!! 

Frankly, I think God had mercy on my poor frazzled mind and threw me a bone to keep me from going over the edge.  AND, as an added bonus… my birthday was last weekend (on Father’s Day) and my sweet and humorous husband bought me a key locator to put on my key ring, for the celebration of when I found me keys.  So he interrupted my spirited dancing around the house, jingling my keys in the air and merrily singing/chanting ”I found my KEYS, I found my KEEEEEEEYYYYSSSS…..” and put the locator ON my ring and tested it.  It works!!  God bless that man of mine!

YEAH!!!!  It’s amazing how they look older with less hair.  NOTE:  The haircuts are “normal”, but we let them GEL a faux-hawk and spikes.

I am just excited that we finally cut Zachary’s mop.  He loves it!!!  No more tangles, and half the shampoo!

Now for Anthony’s transformation… Look at those pretty eyes!

A roller coaster suggests a series of ups and downs, and at times I have felt like I have been run over by riding on one, but the problem with this analogy is that it suggests that I can see what is coming.  On a roller coaster you have an idea of a turn coming up, you can see the dips and turns and the clickity-clickity-click of the ramp tells you that you there is a breathe taking plummet coming up, so HOLD ON.  I know that I have been pretty lax about posting lately, not because of a lack of things to say. I mean REALLY, when do I EVER have a lack of things to say.  I have actually had many profound moments that I have wanted to blog, however between my epiphany and getting to the computer, something else will happens that sets me in a whole different mental frame. 

So, lately I feel like I’ve been more on a bungee cord that just won’t quit.  My drops into depressed feelings and yanks back up into elation and feeling close to God are quick and I am never sure when they are going to happen or how long they will last.  I have had some pretty low feelings lately in many areas.  My indications of this slip downward is my flakiness picks up.  I become forgetful, I get scattered, and I start to want to be alone.  For example, I lost my car keys three weeks ago and for the life of me, I cannot find them.  I keep tearing apart different parts of the house to no avail.  I resigned to their disappearance and called Toyota for a replacement and they informed me that it will be $300. to replace them and the remote because my key needs to be programmed.  WT…?  Well, back to the search!

The lack of employment options is also getting old.  It has been 5 months now and we had a GREAT bite a few weeks ago, but it is just dragging along with very little communication.  So, it is not out… but it is not breaking down our door either.  I KNOW that God will provide, but dang…  I feel like Edgar Allen Poe’s “A Tell Tale Heart”(tick, tick, tick, tick…) 

I have also had some bad DS moments lately.  Sydney hit a plateau for a while in everything.  She doesn’t want to be on her feet, so the walking/cruising has stalled.  She has days where she tries real food and days where she is going back to vehemently rejecting everything.  She has hardly signed at all lately, so communication is down.  There are days moments seconds when she cuddles and days where she scratches and yes, sometimes bites.  To give the poor girl credit, she is cutting four shark teeth molars and got a lovely case of Roseola which accounted for the sleeplessness, fever and general crabbiness for a few days.  Poor baby, poor mommy. 

There have also been some great UPs! 

• My dear friend and Godmother to my kids, Deborah was just declared in remission!  PRAISE GOD!  She has been through so much, and this was the second time that she beat cancer!
• Zoey, who I have been praying for, for 7 months is finally done with Chemo to battle Leukemia.  Precious Zoey is two years old and finally home with her family.
• My husband and I both had birthdays.
• We have a new Executive Director for DSACT!  Woo Hoo!  Cleo is great and I am excited about what this means to the future of our organization. 
• I have made some re-connections with my old life thanks to Facebook!  I met one of my ex sister-in-laws, Glenda for lunch yesterday and we had a great time catching up on the last 9 years.  We are meeting again with the other sister, Jennifer on Thursday.  It sounds odd to make that connections, especially after so many years, but we were family for almost 10 years.
• Some old friends came back to church that have been gone for a while.  It was so wonderful to see their faces then have them come to our small group. 
• I am thoroughly enjoying my Bible study Beth Moore’s Daniel.  It is really speaking to me, especially in these days.

I am hanging in there, some days are just a little darker than others, but I have a WONDERFUL family and friends to lift me up, and a God that watches over me.  If you have a moment, please add us in your prayers for a job to come our way.

To the world, today is Father’s Day.  A day to make sure that your father knows how much you love him.  So, here’s to the Father’s in my life…

Randall - My sweet husband.  I luff you so very much!  I am so blessed that God brought you into my life.  You and I have been through many trials throughout the years, but together we stand firm in Christ…  and that is what makes us strong!  You have proven your fathering skills with our three children.  You have been firm when needed, and a big mush ball that all three kids can run to for love and comfort.  I have watched you grow in the last 8 years and I am proud to be your wife and the mother of your children.  I am glad that you walk next to me everyday and that you are my rock and my partner in this world.  IRLTF!!

Dad - Today my father is spending time “on-duty” as a hospital chaplain.  He will celebrate Father’s day tomorrow if he is not too tired.  Throughout my whole life my father has postponed celebrations of all sorts due to his call of duty.  For 20+ years it was the Navy whisking him away, then Palo Verde Nuclear Power plant that demanded all of his time.  This year he is on duty for the Lord.  He is comforting those who are fearful, hopeful, lonely, and seeking God.  Dad, I am so proud of you!  You may not have been “there” all the time because you were “on duty” somewhere else… but I ALWAYS knew that you loved me and I ALWAYS knew that I could run into your arms when I saw you.  I luff you!

Pike - My father in law.  You are such a dear sweet man!  You have welcomed me into your family from the day we met, way back when Randall and I were dating.  I love to hear your stories.  Thank you for being such a loving father in law!

Randy - My “new” father in law.  Wow, what can I say…  You have swept in like a gentle cloud and filled a hole in my husband’s heart.  You have given us instant love and a new big family!  We were all family in the blink of an eye.  God brought us all together at the perfect time.  I am SO glad to have you in our lives!  I just love you and Charity and Shannon.  I wish we had more time together, but I know that we are bonded for life.  God is great!

Arthur, Robert, and Bernie - The Godfathers.  The three of you have been WONDERFUL Godfathers to the kids.  They are all secure in their extended family and know that they are loved!  You have been there for all of us and I can’t thank you enough.  I love you all for your love, friendship, prayers, and tenderness.  You are truly gifts from God.

God - Thank you dear Lord for the life that you have given me and my family.  You have taken me down unexpected paths and shown your grace and love in each turn.  There are days that I wander, but you bring me back to your path.  There are days that I doubt, but you show me your spirit.  There are days that I fall, and you pick me up.  Dear Lord, I hang on to your Word, especially when I am weak. 

^{Jeremiah 29:11} For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future.

Thank you for all the people that you have blessed me with in my life.

Sorry, no sugar coating this one. Tonight I was innocently sitting around at a picnic dinner at the end of VBS when I got caught up in a conversation from MARS!!!  Unfortunately Randall was at a Buddy Walk meeting tonight, so I was on my own with the three kids.

Let’s just say it has been a long and rough week anyway!  Sydney had two days of high fever and general crankiness/clinginess/no sleep, etc.  Today she is now covered in a splotchy red rash.  Three reliable sources tonight confirmed Roseola a.k.a. Fifths disease.  GREAT!  Apparently she was contagious when she was feverish, but is on the down slope now.. she just looks terrible. 

Anyway, you get that it has been a tough week.  THEN while I am at church (the safe zone… right?!?)  I am having a discussion that works its way to school inclusion (not sure how) and I am floored by the way two people were going on about how (this is paraphrased)

The real problem is that they have done away with special schools.  That THEY need to have special classes and special attention.  THEY do better with special schools.  It is not fair to the other kids that a teacher has to spend so much time with THEM.  It’s just not fair to anyone, THEM or the other kids to have the curriculum brought down.  THEY need to be in schools where they learn life skills and what will help THEM to life normal lives.

Are you %$%#& kidding me?!?!?  I AM SITTING RIGHT HERE!!!!  SYDNEY IS SITTING RIGHT HERE!!!!!  Frankly folks, as pissed as I was, I was stunned and after the week I have had and I honestly have no fight left in me tonight.  I tried to talk about what inclusion REALLY means and that putting our kids in a class with only kids that are delayed will not help them.  They need role models just like everyone else.  They back peddled a bit, but the conversation was still going on. 

I know that I failed miserably as an advocate tonight, but it was all I could do not to break down and cry.  I felt so defeated!  I wanted to cry for Sydney, I wanted to cry for my weakness, I wanted to cry for all those with DS that the world can still stink, and I wanted to cry because I was just tired… and my daughter is only 2.  I work so hard for DS awareness on a regular basis and this week I have gotten so much negativity around DS.  I had a mother of an older child talk about how hard it is when they get older and we (young mothers) just don’t know.  I have seen some awful news stories on a mother suing the testing company for her DS screening coming back negative and she ended up having a child with DS.  She is so angry that she is suing.  That poor baby to be born to a mother who would sue over her “imperfection”.  Another story was on a mother of two adopted kids each of which was a twin with DS that was given away.  The story was a good one, but the thought of their origins just made me so sad.  My heart just hurts right now and as a result my advocacy hat slipped off my head.  I turned with my tail between my legs, I gathered up my kids and I ran away.  (well, walked quickly) 

Now, the kids are in bed, my husband is home, I am typing this post to get out my frustration and I will go have a glass of wine, blow off another night of P90X and go to bed.

No I haven’t lost my lid… Sydney is teething with a side of some weird fever.  2 year molars are ROUGH!  I remember both boys turning into little demons when they cut these teeth.  At 1:00am she had already been up four times, I changed two diapers and gave her two bottles.  At this point, I can’t handle her crying and moaning in her bed, so we are up and watching Sesame Street in the wee hours of the night/morning.  Sigh!  No signs of her wearing down… no yawning, no eye rubbing, no laying down.  At least she is content to watch TV, so I am getting some work done for DSACT.  Thank God for Elmo!!!