Sunday, March 4, 2018

Special needs with a side of guilt

 I took a hiatus from blogging for a good 6-8 months...partly because I became busy with life, and partly because, I just couldn't write...I guess I was putting my creativity and stresses in other directions. I spent this year pretty much baking, designing and believe it or not...drawing!
I am so thankful to God for several things...
First one being...Kenny has not been sick. Seizure free for a year! We did do a few breathing treatments with a Tamiflu script, but never needed, when the flu hit our house a few weeks back.
He has gotten more hyper now that his medication was increased after that last seizure. So, I guess we take the good and the bad.
Secondly, I am thankful that God gave me creativity. It is an awesome outlet for my stresses...and God knows, I have been dealt a whole lot of I love writing, baking, designing, creating, and I got back to my roots with drawing!
 (Madonna, a cat on a chair, Betty Davis, Kenny "Babyface" Edmonds,
Prince, George Michael, Harry Connick Jr.,
George Michael, Justin Timberlake, A dog, and a sexy body)

Third...I want to thank God for my hard working husband. Seriously...we have gone through hell and back...several times...but because of him, I am able to be creative and do what I do. I know I tend to make him crazy with my pre-menopausal/going crazy from teens and a special needs child...meltdowns I face him with on a daily basis...ewps...sorry honey. I even lost interest in the taste of wine...God help myself and my husband!
And finally...I am beyond grateful to God and Make A Wish for Kenny's Make a Wish trip to Disney World and Give Kids The World! We went in Novemeber!
 Kenny went on every ride...AND LOVED everything!
It truly was the best! We are forever blessed with memories of a lifetime!
(I will post many more pictures on another post)
This past few months have been very hard...emotionally and financially...I guess it can go hand in hand...when the weather gets cold and snowy, the jobs tend to get sparse because, lets face it, who wants to go or do anything when its cold out...most people want to, when that happens, businesses slow down and then, they don't have the extra money for signs, banners and decals. When that happens...the Tomecko household goes into lock down mode...lots of canned soups and pasta dinners for a few months. I cant even tell you when the last time I went to a store to buy things other than the necessities. I even so much as had to stop baking cupcakes. Anyone that knows me knows that the Lent fish fry's are my time to give back to the community, and make people smile with my cupcakes that I donate to the church. Nope...not this year. I was able to get 9 dozen made and frozen for this past week...but that's pretty much about it. I had to turn down orders as well. The money just wasn't there for me to get the supplies...I am confident that things will pick up, but for now...its back to the basics. I am trying to stay positive and think that this is Gods way of telling us to sit back and return to the fundamentals of life. The hard part is trying to make ends meet, fight for my sons rights as a disabled child, try to teach my teens/preteens that life is more than just handouts...its hard work, love  family, trust and honesty.

So this brings me to the real reason I am writing this post. See, I have fought for my son...even before he and Nick were born. I fought hard for them to stay inside of me...just for even an extra day. Well, I am still fighting. I am fighting demons in my head that just wont go away. Guilt. Lots and lots of guilt about Nick. See, it is combined with what we are dealing with with Kenny and his issues. Long story short, I had Kenny at his doctor appointment for an autism assessment (which was made because his doctor felt we could get more services now and in the future with the true diagnosis of autism). The doctor that was talking to him and myself wanted to know more about when he was born...what went on with, I went through the whole story about being born early...yada yada. She wanted to know what happened with Nick, so I told her how he started to bleed in his lungs from being suctioned and then the brain bleeds...I then told her that they told me there wasn't anymore they could do...but they still had him hooked up to his respirator. I wanted to kiss him and see his face, so I asked them to remove his mouth tube...and they asked me if I knew what that meant. I told them that he was dying anyhow...I just want to hold him and see his beautiful face and kiss him. Well, This is one of my horrible demons..I have felt guilt about this since day one. The doctor (who was testing Kenny, but also worked in the NICU several years prior), went on to tell me that she didn't feel he was going to die, but his quality of life would have not been very good. WHAT?! She confirmed my worst guilty fear...that I killed my own son.
As a double whammy, a few weeks later, we had the appointment that was going to make or break any sort of help for Kenny in the future...well, I walked into the appointment just to be told that they felt he did not have any form of Autism. The extreme OCD, constant meltdowns/tantrums, hoarding ways, and the fact that he is in his own world at not caused by Autism. He is too friendly and social for autism. They did make note that he is mildly retarded (Que in second wave of guilt. I now have a son that I couldn't keep inside of me...and it caused him to become intellectually delayed/retarded). Mildly? Umm..I have always treated my son as typical as possible. I feel that in order for kids to grow and learn, you have to treat them we have. Well...I know mild intellectual delays as opposed to moderate, severe, global..etc. Even his teachers/specialist at school feel he is more global delayed. I then asked the doctor what that means now for Kenny...and for his future. Since there is help for kids with Autism, Cerebral Palsy, brain injuries, Down Syndrome, etch...Yet, there is nothing out there for a child that is clearly not typical. He doesn't have Autism, and (according to doctor notes) he isn't severely intellectually impaired...then...where does he go from here? He does have: apraxia of speech, severe-profound hearing loss, and is at a 5-6 year old developmentally, a chromosome abnormality, Cerebellar Hypoplacia, a large Arachnoid Cyst Microcephaly, epilepsy, high and low muscle tone, Gastroparesis, etc. yet, he doesn't fall into any one category to get the help he needs...and the resources for now and the future. I ended up telling all his doctors that they are using him as a Guinea pig. A science/medical experiment...since not many 23 weekers survive. 
Now, please don't get me wrong. I am so grateful to God that he is not wheelchair bound...he has really shown us that he is a little miracle and fighter. What this is about is how he is in-between. He is in-between being typical and being wheelchair bound...with a set diagnosis like cerebral palsy or downs...or even autism. He doesn't fit into any category, so there is not much out there for him...for us, in terms of resources. What will happen to him when he becomes 18? What will he do? What will he become? I am scared to death for him for his future. I honestly wish I could turn back the clock. I want him to be normal...I want him to be a typical 10, almost 11 year old. I hate his meltdowns, his very short term memory...where he asks the same question over and over and over and over again...all day long. I hate how he is still being fed through his feeding tube because he doesnt eat enough to sustain him...and if he eats...and eats to fast, he is doubled over in pain. I hate how he can only write a few he is slowly learning to add/subtract...let alone...count. I am just scared from the amount of guilt I have over him being the way he is...and that his twin is gone.

So the other fight I have going on...if this wasn't the ongoing fight with the church. If you recall, our church pretty much kicked Kenny out of PSR classes. I went straight to the the Bishops office...where, I got yelled at and given the run around to talk to their school representatives...the ones whom I started off this whole process before going to the bishops, again...fighting a battle with the Catholic church...also has affected my faith in the Catholic church...not Jesus or God...just the whole Catholic Church.
And now...another fight...with the school system. Kenny is going into 5th grade...middle school here in Ohio. Right now, we have our middle school right behind our house...literally...right behind our house. This is where the older kids have gone, and where Kenny and Gina should be going...yet, at Kenny's IEP meeting last week, we were told that he is not going to this school...he will be going to a school closer to where we used to live, because there is not enough kids going into 5th grade with special needs, so they want to send these kids (Kenny being one) to this other school! Ummm...again...he is being segregated ad discriminated against. He wont be going to the same school with his sister who is in the same grade. He wont be going to the school where all of his friends from elementary school will be going...he will be going to a school set up for kids with complex special needs. In my eyes...this is against the law. In my eyes, I understand they have great teachers and he'd get the one on is segregation at its finest! I wont allow this! I have brought up my son to be as normal as possible. He will not go to a different school than his sister and friends. I wont have him bused to a school that is much father away than the one right in our backyard. The number one reason for moving where we did was because of the schools and the close proximity of them...also they were better rated than any other schools. We got ourselves into debt, a higher mortgage and have skimped and worked our kids can have the best that we could provide. It has been far from easy...but I will NOT allow my son to be shipped off to a school and feel like he is different because the school system is trying to save money. NOPE...not happening. So..yet another battle...on top of a battle...on top of another battle.
Will it ever get easier? 
When you hear that raising a special need child is tough...It is tough because not only are you giving your whole life...getting frustrated at things, but not really being able to. Needing a break from the constant...just constant pounding of everything that special needs. Meds, tube feeds, wiping butts, watching out for dangers that he has no clue of, repeating, keeping busy, getting frustrated with meltdowns, unable to go things as a typical family (because there is only a short window before the meltdowns)...but it is also tough because of the fights that have to be fought for the interest and sake of the child with special needs. It is exhausting...mentally, emotionally and physically.
I know I/we will get through all of is just so heavy on my soul right now...I just had to write it out. So, for any of you parents of special needs kids...I understand your struggles and how draining life can be. Its draining for parents of typical kids as well...but at least, with typical kids, you know they will grow, thrive and carry on an adult life that will produce a job or jobs, a family and their own set of bills...with the mountains and valleys of life. But having a child with special needs, its a whole different set of struggles and dreams. Oh how I wish our kiddos with special needs can live a life just like those that are typical. I hate this for Kenny. I want him to grow and live a long and meaningful life. I just wish I could have kept Kenny and Nick in for longer than 23 weeks.

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