Sunday, July 1, 2012

facing reality

Of course it has been forever since I have posted and I only usually post on big holidays or I rant and B***H about how hard my life is, but whatever it is therapeutic for me to just let it all out, like a virtual journal except the whole world can read it should they choose. moving on.....

Today was a hard day for me. Nothing big or major happened, I just had an epiphany that I have been waiting to hit me since Coby was first diagnosed with Austism 4 years ago.  When he was first diagnosed after a crazy long day of testing and exams I already had prepared myself, I knew my boy had Autism even before they said it, I just did enough research on the web and with talking with other parents to know the inevitable. So when they confirmed it as I have said before I was relieved to be able to have the diagnosis, the only question I had was "ok what do we do now?" well we already had Coby in speech and in a special ed pre-school, so the only thing they really recommended was a little more speech and occupational therapy to help with some of his behaviors. I remember saying to Nate "thats it, thats all they can do for our boy?!" we have been doing that with very slow progress. I remember the clinical psychologist and the speech therapist reassuring me that with all the therapies and behavior modifications that Coby would be just fine, he had a more mild form of Autism, but a serious speech deficiency, but that with all the speech therapy he should be able to probably start speaking in sentences by the time he is seven or eight. Coby turns eight in March and he still has a barely two year old vocabulary. His assisted technology device "talker" has helped some, but his communication skills are nowhere were we thought they would be at his current age. So it leads to me question," is this it?!" is this it for our boy? will he ever get better speech or behavior wise?

Summers are so difficult for Coby, he loses his very structured day to day schedule that he is afforded at school, to stay home for nearly 4 months with us and it just is very difficult to keep his day as structured as it is during the school year with two younger siblings. I try my hardest, meals are kept at the same time as always, same goes for bath and sleep schedules. I long for him to have year round schooling and I just think it is such a disservice to him and kiddos like him to not have year round schooling, because when he does begin school again, it takes nearly half the school year to get Coby back into the routine and to start making progress, then BAM schools out again and he regresses. It is a vicious, vicious cycle and truthfully I was so excited to move to Minneapolis (when we thought we were moving there), because they have schools for Autism and YEAR round schooling, but since we are staying in WDM now, I have to readjust my expectations (which is fine because I LOVE WDM and have ZERO desire to move).

So back to my reasoning for this post, today I had that epiphany that made me think "my boy has Autism and this is it for him and for us" daily struggles, daily scream sessions, daily destruction of people or possessions and daily outbursts. I feel some self loathing, because it never hit me before that my boy will probably never get to enjoy life the way other kids his age do. Things he used to love to do, he is starting to struggle with. The sand beaches which has LONG been his favorite place he has a hard time enjoying now, because of sensory overload he has a hard time with all the noises, the texture of the sand, he HATES and I mean HATES the wind and refuses to step outside in the wind. All he wants to do with the sand is eat it and I have tried many different things to help with that. Coby hates to where clothing, he prefers to stay in his pull-up or to be naked, I dont know if it is the texture of clothing or his compulsion to want to be naked or its just how he is most comfortable, but it doesnt matter public place or not, he wants to be naked. We also took him to "Pump It Up" (bouncy house place) the other day and in the past he was able to wait in line (for a short period of time) for his turn down the slide and to jump in the houses, but this time, he was all over the place and very agitated and he pinched and scratched and slapped the crap out of me while we waited. He would push other kids down the slide or would want to cut people in line and would flip shiz if I tried to stop him, luckily the staff was so wonderful and caught onto Coby and made a game out of him waiting, to help him and I out.

I cant help the way I feel. I feel like Chase and Caitlyn are left out of so much, because of their big brother and I feel bad, because Coby gets so much attention and sometimes Chase and Caty are just off in the distance. They both are catching on now that Coby is a little different and sometimes they help out and sometimes they instigate and agitate Coby on purpose. We have hired a nanny (which is my sister) on Mondays and Tuesdays for 5 hrs. each day so that we can take Chase and Caitlyn to do things Coby can't, but we are still left with the guilt that Coby is missing out, but there are just certain places we just can't take the little buddy. You have to be one on one with Cobers and now that he is getting older and bigger sometimes its two on one. He is a strong kid, Coby is 4'6 and 61lbs. and since I'm 5'2 and 117 lbs. he is catching up to me quickly and thats where the epiphany comes in that someday he is going to be bigger and stronger than me and i'am terrified of what will happen if he pitches a fit somewhere and I can't just pick him up and carry him out or cant pry him off Chase or even myself. I may be worrying over nothing, but I can't help, but be a little worrisome for what the future holds. I have pad-locks with keys on all the doors in my home so that Coby wont get out and run off, what happens when he gets older and figures those things out?

I know I'am probably worrying myself over nothing, but if you have ever been in my home or are around Coby on a daily basis you would probably worry too. The amount of destruction that has been caused at the hands of our sweet boy totals in the 10's of thousands and no that is not an exaggeration. I pull my hair out on a daily basis from the stress and yes I may be a little dramatic and have self loathing, but this is coming from a mom with little sleep and utter mental exhaustion. I wish I could make people understand what it is like for my boy and our family on a daily basis, the struggles we go through, because of Coby's disability. I hate when people say "I know what your going through, because so and so did this or that" but truthfully you have no freaking clue and I cant fault anyone, because unless you live with him or someone like him or someone with Autism or a difficult disability or are constantly around that person, you cant possibly begin to understand. Your typical 2 year old throwing a tantrum, while yes it is difficult, I have a 2 year old who throws tantrums as well, that 2 year old will eventually grow out of it and there is an end in sight, but I have to see the end of tantrums with Coby.

I have begun a small novel here, but I just needed to let that out like word vomit. Do I feel better? you may ask...maybe a little....if you stuck around and read all of this, you are awesome! thanks....Until next time..there is so much more I could say and I just need to actually write a book...xoxo, Tiff      

7 comments:

Carly said...

I love you Tif!!!! You are such an amazing mom and friend. I'm sorry you are having such a hard summer. I am always thinking about you and praying for your family. I love you all!

Anonymous said...

I know how hard it is on the entire family and it breaks my heart! I cant help you since i am so far away but you know I can be your sounding board anytime! I pray all the time that Coby will be able to talk and play with the other kids and do the stuff he cant do yet. You are a wonderful Mother to my Grandbabies and I am very proud of you! Love you all!
Mom

Laura Bernard said...

Oh, honey. I am so sad for you. I think of you often and wonder how you manage. I recently read a book about a 17 year old with austism. The mother still would take him to the ground when needed and even mentioned heavy blankets that they placed on him when he had panic attacks to help calm him. I honestly can't imagine. You are such a good mama, trying to do your best. I have no idea what your life is like from day to day, and how your heart must ache for what Coby misses out on and what sacrifices you and the rest of the family have to make for things to work. I wish I had something to say that would help. I don't and won't pretend to. Just know that I think of you and admire you. Hugs.

Kelly said...

Tiff, I know I won't ever be able to begin to even understand what your day to day struggles are like. But I will say that you are an amazing mother!!! I admire you so much. Hang in there!!

Jennifer said...

I think you're an amazing Mama! I love reading about your family! You're a very strong Mama and I have to thank you for inspiring me to go to church alone with the kiddos. I figured I you could do it with 3, I can do it with 2. I've been going even if the Hubby is working for the last few weeks. Thank you!

Toiya said...

You may not be able to recognize just now how amazing you are...but I can! You are doing things for your children that nobody else but you can do! You are wonderful!

Anonymous said...

Hi, I know you don't know me but we are friends with the Beeston's and were in the WDM ward for a short time. I enjoyed reading your journal. And I know how you say people say I know what you are going through when really they have no clue. YOu are a strong person, and give you props for not giving up. My husband was diagnosed with bipolar and mood disorder, and life,marriage had been a struggle. He also had lots of unresolved issues and abuse and PTSD from his past growing up so that plays a big part on top of everything else, He has anger with is all and had destroyed many things as well and it has cost us quite a bit. I know every one's situation is different and people are effected differently by each disorder or disability, etc. Your words brought tears to my eyes. I"m glad to have the gosspal in my life I know that has played a big part in being able, and capable of dealing with such stressful things. But just continue to stay strong, you are an awesome, amazing person!!!