Tough Reality...

One thing I've really noticed about social media is that people can give off the persona of a "certain life" that is so far from the reality they are living that when you get a real glimpse into their actual life, it's completely different. I've often thought, "wow, what a wonderful life they have, they're always on vacation or doing lovely things" yet in reality I'm only seeing a certain side of their life because of what they choose to post (not a bad thing... I post way more when I'm on an exciting vacation then when I'm doing laundry!) In fact, I know many people who have had to take facebook breaks because it's so easy to get involved in other people's lives and how great it must be to be so-and-so that we can get consumed with it! Just the other day, one of my facebook friends posted about how she had literally cleaned all-day-long!! Thank you! Other people have to spend time cleaning too, because I was really starting to think I'm the only one who has to do that and everybody's house is just sparkling clean all the time and all they do is lovely things! :) (Again, I'm only seeing one side of their life and assuming that's their entire life. Yet, on the flip side, we have our other friends who post every time they're going to the bathroom! TMI people!!!) We are taught from a very young age to put our best foot forward. And while I think that's perfectly fine, and it's great to have a positive outlook on life, I think it's definitely ok to show some vulnerability too. We're all human, we're all going to go through good times and some bad times, and we're all learning how to live this life the best we can. (Believe me, I use to make it a priority to be that "I-have-it-all-together-girl" but now that I pretty much can't go anywhere without Benjamin showing everyone in the whole store that I don't have this parenting thing figured out... I got over that pretty quick-HA!!)

All that to say, I don't plan on posting too many "horrible days" because nobody wants to read about bad days all the time and I definitely don't want to spend my time or energy remembering them. (Ben always says, "Nicole!!! No negative Nellie!! Can I just tell you how thankful I am for him!!) But I also don't want to give this false sense of how amazing our life is without the reality of most days. Because let's face it, most days are pretty hard and I'm not feeling like the greatest mom. And the only idea of parenting and experiences I have are the ones I had when I was little or the ones I think are "normal" and believe me, we are still learning our new normal over here everyday!!

By the way, I want to take just a minute here to say that I know we are not the only ones going through or living hard things. Each of us has our own journey, and my purpose for this blog is for a couple reasons. 

• First, I want to remember things! Mostly the good and some of the bad so I can look back and see how much we've grown and how blessed we are! Not to mention, this is a major stress reliever for me... I love writing... always have!

• Second, I think through our life stories we can learn from each other. My cousin Hayley is fighting a hard battle with cancer right now (http://lifesprom.blogspot.com/) and I can't tell you how encouraged and inspired I am by this beautiful lady! My worst days are CAKE right now compared to what she's going through and she has blessed me greatly by her faithfulness and courage and amazing testimony... not mention I know how to pray for her specifically!   

• Thirdly, I want to continue to share and educate those around me about special needs. It's different... each situation and person is different... and we still have major misconstrued ideas about people with disabilities (and I'm preaching to the choir here as I'm about to share my own experience).  This is another entire blog which we'll save for another time!

• Lastly, this is the most effective way to keep my family and friends up to date! Yes, I'm that friend that would love to call you, absolutely love to get together with you, but honestly... most days I don't have the energy to even try and fit one more thing on my plate. My hope and desire is that someday soon I'll be more organized and together. But mostly I'm just living day to day and burning my energy from all ends. (But don't give up on me! Keep inviting and calling... please!)

Wow, this is already much longer then I planned, so we'll get to the actual story now!
A couple Fridays ago I had a really bad day. Definitely towards the top of the list. We had a pretty big meeting with some specialists and they gave Benjamin an Educational Autism diagnosis.This is different then a medical diagnosis and it's actually really a good thing. (Does that mean that Benjamin would get a medical autism diagnosis? We don't know... this is all new to us and we have lots to find out) Benjamin's about to start kindergarten and the services and learning styles he will be offered because of this will help him flourish!! The whole diagnosis was actually a really lengthy in-depth process. And the specialists who evaluated Benjamin and the staff were wonderful!! Still... it's really no fun to add another thing to "the list". Although again, I do think this will help us in parenting, routines, and all areas of his life. The specialists said the hardest thing about diagnosing Benjamin with anything... is that it's hard to know where the cerebral palsy ends and the autism behavior starts. So for example, is Benjamin non-verbal because of c.p. and that part of his brain doesn't work and so he has outbursts and frustration because he can't communicate or is it more autism and the non-verbal piece is common in autism. Super hard to know.

After this two hour meeting (it went great, but emotionally and physically depletes me) we had two school tours lined up of different classroom for Benjamin in the fall. One is a LEEP style classroom - Life Enrichment Education Program (btw, if a word is lighter or a different color that means it's a link and if you click on it it will take you to another website where you can read more about it if you're interested, I just don't want to write a whole book on here about it!) and the other is called a SLC/A classroom - Structured Learning Classroom for Academics. Both are basically different style special ed. classes.

We went to the LEEP class first (smaller student/teacher ratio) and to tell you the truth I was NOT prepared. The kids there are K-5th and there were about 6 of them there at that specific time and they were all older... the younger ones had gone home for the day. And I don't want to sound rude, or horrible or degrading, I'm just being dead honest about this. It was terrible... My little Benjamin is such a stinker, and so darn cute right now... and I had this harsh reality hit me that some of his behaviors might not be so cute and darling when he's 12. :( Did I think he would just automatically start functioning at a normal age when he got older? Did I think he would just stay small and amazingly cute forever? Who knows!! I didn't think... it's so day by day. (Don't get me wrong, I'm not saying that I won't think he's cute and darling, because I'm his mom and I adore him... but I got a glimpse of other kids at an older age... and it's definitely different being 12 and having special needs and being 5) It's going to be a lot harder. And if I think it's rough explaining Benjamin now... it's going to be tougher when he's older. Talk about a little bit crushing... what I wouldn't have given at that moment to be a normal mom visiting a normal kindergarten room... (just being honest). And then fear crept in... ugh!! If I'm feeling this way and I have a special needs son... how are other people going to feel about him when he's older? (This is all happening while kids are coming up giving hugs, some with rags in their mouth, some making non-verbal noises trying to communicate.) My heart sank... really, we all just want the best for our kids and it just hurts so bad when you can't make their lives easier... special needs or not. Now, thank God for Ben. His take on this entire day would be totally different if he was writing this blog. I am so ding-dang emotional about everything and he keeps me grounded and level-headed and helps me refocus on what's important -  that is making everyday of Benjamin's life count the best we can. We're not going to be worried about if they have the best academic classes and sports program in the state. We're going to be focused on getting Benjamin into a classroom that he loves!! Where he'll learn life skills that will keep pushing him forward and enhancing his life and who knows... many of those kiddos in there were working on math and reading! That would be awesome! Anyways, both of those class visits were disheartening for me and we both felt they weren't quite the right fit for Benjamin.

Fast forward to yesterday... I had emailed the Director of the LEEP classroom (advice from Benjamin's current teacher after I had another breakdown in her room) to let her know my concerns and she called me immediately and asked me if I'd like to visit another LEEP classroom. We went to the LEEP classroom at Lewelling Elementary and I just loved it!! Loved the teacher, loved the classroom and that it's only two minutes from my house. I feel so relieved! We have Benjamin's transition meeting today where we put together his first IEP (Individualized Education Plan) and there's going to be like 25 people there because we're transitioning from the Clackamas ESD program to the North Clackamas School Districts. I'm sure it'll be a little stressful but I'm actually pretty excited about it now!

 Isn't this journey we call life just crazy?? It's all about adjusting, refocusing, changing our perspective of our reality and a lot about loving. I promise my next blog won't be such a downer... This was just a really big step for me and I feel like I already have grown leaps and bounds experiencing it. Bottom line is I'm super blessed, and very thankful that God has a big plan in all this even though sometimes I forget that... ok, sometimes I forget like everyday. :) I do want to give a huge shout out to Clackamas ESD and North Clackamas School District. They have super hard jobs not only teaching special needs children but also dealing with their crazy, sometimes erratic parents! Both programs have been fantastic and I feel blessed we have such awesome programs for our kiddos!

Yesterday was Benjamin's last day at school. Since there's only one other boy in his class, Teacher Amy invited us to come in half way through and we had a party! Balloons and ice cream and bubbles! It was a blast! Here they are swinging below:

(of course, Benjamin's hands are blurry because he was so excited and doing his "happy hands"!!