“It’s a crazy, beautiful life!” ……..often from a distance!

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If there’s one secret I’ve learned from almost 10 years of being a special needs parent it’s this…. You will beat up the only other person that’s the closest to you and your child because that person, (often a spouse, but could however be someone else!), gets it and knows how important it is to carry the burdens and the triumphs, with you!

As a very talented teacher once told me before moving onto a different teaching path, “I know it’s a crazy, beautiful life parenting a special needs kid!” She was right about that and to add to her statement, I’d say “Yes!” and often it is “crazy, beautiful” ……from a distance!” See, we as special needs parents often find our days full of nothing more than PLANNING! So much planning goes on that we find little time to do much else some days! We plan for EVERTHING! Why? Well….we have to. We don’t want to always be in planning mode, but through trial and error of previous horrible mishaps, we are forced to plan out better daily routines to weekly routines to longer ones, which leads us to ask the really tough questions that leads us to the extremely HARD PLANNING! The “What if we’re not here and he still cannot live on his own?” type of PLANNING! This ugly question always seems to linger and has an amazing ability to squash the best of our “crazy, beautiful” days! We try to dig a hole and bury our thoughts off out of sight for long enough to revel in the fun of the day or maybe the entire weekend, but before long something always reminds us that THAT question, still, has not been answered!

Imagine if you will, being in a race against time and if the buzzer goes off before you’re done, you lose. Okay, now picture that loss being the independence of your child! Every day counts, every day matters, each and every day! See how much pressure can build between you and the only other person that gets it! Now throw in different views of any sort, you will almost constantly feel like you are walking on a battle field and can quickly be at odds, with the very one you love!

The biggest set backs and shock that one would hope to find support in can and IS often the very places that limit and confuse and cause that much more chaos to an already tired and stressed world: I speak both of health insurance companies and the school systems that should be educating these children. (Please do not get me wrong when I say school system! It is often our very caring teachers that find themselves between a rock and a hard place on how to navigate a system that wont allow them to fully and somehow often end up on the loosing end of the stick because they happen to be the “face” of the system that may or may not understand the needs of a child!)

The above mentioned stressors often strikes the match, that lights the fuse to the bomb that must go off but alas good things come from these discussions and HARD PLANNING does happen! We are a family of planners! When you have a child with autism or for that matter, any type of special need….. planning ahead as possible can be an indescribable comfort for not only the child, but for the family as well!

It is indeed a “crazy, beautiful life!” that has taught us to live in this strange parallel balance of being completely planned and totally “in the moment”, both at the same time! Because of this unique universe we share with the child we call our superhero, we understand and embrace that pretty much “anything goes” and at the same time he always seems to teach us the ultimate lesson that neither myself nor my husband could have even began to plan for….

Crazy and beautiful moments with just enough constant distance from the world to  …(attempt) to plan the next move!

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10 moments I knew everything was going to be okay….

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By the end of this summer we will celebrate our superhero’s 10th birthday & I have to admit it’s been quite a journey so far! Looking back on the first 10 years there are times when I’d have given anything to hear my baby speak, look at me, or play a game as it was meant to be played; these are all things I’m excited to say that he can now do! The following is a list of moments over the past 10 years of how I knew that everything was going to be okay! Since he’ll turn 10 this year, I thought of the 10 biggest moments that gave us the greatest hope of what his future holds:

1) Quite possibly the biggest ~ he found his voice at 4 years of age! I heard him for the first time say the word “Momma” in his bedroom one sunny day while I was folding his clothes & I cried for hours after that! I was even able to get him to repeat it several more times that afternoon! I’ve often played that day in my head whenever we get stuck and need to look for an inspirational point to get us moving in the right direction again!

2) He finally became fully potty trained ~ at 6 years old, (he still needed some help with the details after that age but he had the process down!), he could go to the bathroom & would go willingly without worry or stress about it!

3) His social interest in others! ~ at about 6 years old our kiddo really began to seek out other children like he had never quite done in the past & although he could barely speak full sentences, the fact alone that he wanted & had a desire to interact with others was quite amazing to witness! I had been told that our children can’t & won’t learn to properly interact with their peers, yet everything we were seeing from him was that he most definitely wanted these interactions! He would often run up to children early on before he could talk, pulling at them in hopes they would respond to him in some form! When he did finally speak & begin to form words & sentences his entire world changed as he experienced what it was like to have these same interactions & exchanges with words & not confusing gestures!

4) The moment in the doctor’s office he was finally able to answer the question “Where does it hurt?” (Receptive & Expressive Language skills!) Seems like small words right? Not if you are in pain but you cannot correctly express how you are in pain! Our kiddo went for years unable to tell us or others “what” hurt. But then one day on a sick visit to his pediatrician, he finally did it ~ he was 7 years old! We were there for what I thought was either his ears, nose or throat ….always a flip of the coin because he could never tell me what exactly hurt or how bad! So, this time when the doctor walked & looked at me to attempt to figure him out, the kiddo announced “Doctor, my throat hurts! What is my diagnosis?” And better yet, he was even pointing!” The doctor also realized how big a deal this in fact was for him! I should also say too that this was quite a feat with a child whom exhibits an extremely high pain tolerance ….thus the reason we usually have to watch him so closely to figure out what’s going on exactly! (Last summer he walked around for a week & a half with a broken ankle because he showed no real signs of pain! I finally decided he was walking off side just enough that the ankle probably needed to be checked & sure enough it had been broken for a full 10 days without us knowing!)

5) He wanted a sibling! ~ at the age of 7 he came to us & asked “why” he didn’t have a sister or brother? Truth be told, he was not ready to be a sibling for the first few years of his life! What do I mean by that, you ask? Well, he was not capable of needing or wanting the love of a sibling! By age 7 ….that had all changed and I will never forget the day he came to me and asked me why he didn’t already have a sibling! I have to say I never expected him to ask for his own brother or sister but then again so many times in the past I’ve set the bar too low for him …..and laughingly ~ he exceeds it each & every time! So, THAT is how we ended up as foster (or foster to adopt) parents!

6) He realized their are many different types of people in the world …and that’s okay! ~ At 8 years old, he, for the first time realized that he attended school with children that are “different” ….imagine that??!! One sweet, little girl that happen to have had down syndrome was confusing to him because she was “different” & he was actually treating her differently than the other kids! After several talks with his special education teacher I took the reins & rushed to the library & loaded the car down with as many books on “being different” as I was allowed to check out at one time! I was on a mission! My child, though he has autism & was considered very “different” by the standards of most crowds was about to learn that being different is okay & nothing to be afraid of & we would not treat her or anyone else any way we would not want to be treated! We spent a week on this topic and by the end of the week, I learned that my child was afraid only because she looked different from everyone else & he didn’t understand why. I assured him that it was okay to ask me questions & we talked in detail about children with different needs all around him, he learned a lot that week! He & the little girl later became friends!

7) He learned to have a sense of humor! ~ at age 8 driving home from the pick up line at school the kiddo noticed our foster child had just discovered “where” his nose was & wouldn’t keep his finger out of it! Now the superhero is crumbing like kryptonite at the toddler who just won’t stop when I finally said “He’s just discovered where his nose is that’s all!” …. I hear the quick witted kiddo say “that’s not a nose, it’s a booger factory!” Me & the then 8 year old laughed the entire car ride home!

8) He learned what the love of an animal is all about! ~ at age 6 we bought the kiddo his first to crazy pups ….& they’ve loved on him every since! We just rescued a 3rd dog this year! The kiddo cannot turn around without getting a doggie lick to the face & I have to say there is true healing going on between a boy & his dogs! It’s awesome stuff to see him accept animals & love them like he does now!

9) He learned what it was like to lose a loved one, (He understood empathy!) ~ at age 9! Last year my grandmother passed away & she had been very close to our family, we visited her on a regular basis. Not being sure how the kiddo would do during the services, I took him to his OT and speech therapist the day of the funeral home visit only to find at pick up time that during the session he had talked at length of his great grandmother & with the help of his therapist he had even written her a ‘goodbye’ letter to read to her that evening at the funeral home….. I was beside myself with emotions already but to think “could he really feel this strongly & want to do this?” later that night he did just that. When we arrived he wanted me to take him right up to her & help him to read the letter…. we both had tears…. he felt her loss! This was an enormous step for him!

and last:

10) He became a real friend! ~ at age 9 1/2!

keep going for your children will get there, one step at a time!