Wednesday, June 26, 2013

Don't mind me, I am just going Crazy.

I am losing my mind, literally.

I wish that I had hired a lawyer or done more homework. I am so stressed out this summer having my son home and having him regress. Yes, he is not even 4 yet, but when we had his ARD meeting, I have mentioned ESY services a few times, and they keep denying it saying he has no regression that lasts longer than 8 weeks. I know now I should have requested to add it to his agenda at the ARD meeting in writing. The things you learn along the way.... He has regressed noticeably at home over holiday breaks, and I just knew this would be an issue. So, what is he doing? Increased meltdowns. Fecal smearing (new since summer), self injury, loss of language ( he is technically still considered nonverbal), All of the progress we have made with potty training is GONE. We were sooo close to having him in underwear during the day with no accidents. School hasn't even been out a month. I feel like a huge failure of a parent because I cannot seem to keep a routine enough schedule or get him to behave like he can at school. I am Working at a kids day out program and I am one of my Sons teachers.He has two other teachers that are fantastic and patient and 6 neurotypical classmates who are pretty awesome kids. At home, He runs around he house stimming on water faucets, the toilet, shower heads, doors, drawers, cabinets, the oven, microwave..... I cannot keep up and keep redirecting him. My house is HORRIBLE. I had to let that go. It now looks like an episode of hoarders. Think I am joking? Wanna come visit and see for yourself? At least the diapers make it in the trash and we don't have bug problems.... Yet.... At kids day out, the other kids ask why he doesn't share, or just grabs at things. They ask why he is still in a diaper, and why he doesn't talk.I am actually ok with the questions because that means the kids want to learn and help. He spent the first day running in and out of the room, down the hallway, and around the building..... Or screaming... A lot. Or stimming on the doors, toilet, sinks, water fountains, the automatic paper towel dispenser... Does anyone know if I can request an emergency IEP meeting? He needs ESY and I don't know if they can do it, but it is either they do that, or I am literally considering going to an inpatient mental facility for myself. Maybe both.
Good for me that I have a call in with a mental health professional. I see them in less Han a week... I can make it, right? They had better break out the strong drugs... Does electro shock therapy work? What is the worst that could happen... Death? Ok, cool. I am down.

This is what happens when your spouse spends 90 percent of his awake time on the job, away from
the home. He does this because we need money to pay for things, like food and a roof over our heads. It isn't to save for some vacation or a new boat or something.   This is simply to survive.
This is what happens when your family support system only exists in theory. They either don't live close enough to help, or those that do, don't care to be around your kids. OUCH. Sorry kids, grandma and grandpa would rather take a nap or booze it up than to spend time with you. They are the worst about saying "we support you" then turning their backs. It hurts unimaginably to think that you are such a problem that even your flesh and blood have "better things to do" ALL OF THE TIME. Those friends you once had.... You know, when you actually nurtured relationships with adults.... Well, they have either forgotten about us, are wrapped up in their own lives, or simply don't know how and if they could help.  You and your family are distant memories...maybe they feel just as deserted and are hurt that I haven't called. If they only knew how much I want to reconnect with adults again. I barely have the energy to get out of bed, brush my teeth and change clothing.

Yes, I go days without showering. I always do before i have to be somewhere important, but f you catch me at the store and i have a swarm of flies following..... yea... my kids are bathed almost every night though... routine, remember? In fact, as I write this, I am still wearing the clothes I put on yesterday afternoon with all of the lovely crusty toddler crumbs that comes from feeding stuck to it.
I have had people watch the kids in the past, and I either make a mad dash to shove everything into every hidden crevice I can find so they do not ever really see the condition of my house, or I bring them to their house and wonder what I will have to do without in order to pay for them to watch my kids while I go clean, or lie and say I am cleaning but take a nap. A 50 dollar nap.....

This is what happens when the church you attend is no longer meeting the needs of your special needs child. When you are patient, and do all of this research, and educate yourself on some solutions that might work and you get shot down time and time again. I know God is calling me to do something for other families like mine. this is bigger than just MY family. it feels as if the whole of society has chosen to shun me and our family. The school district, people I called friends, family, strangers in public, church. I feel like David amongst a society of Goliaths. I cannot tackle it all, and I am letting God take over.
There are a few.... A very select few who have stuck around. They are the ones who you would least expect to help. other parents of special needs kids.... Although our contact may be that ONE time, it is what we have in common that makes me feel that I am normal considering my situation. There is a friend, who spends her work day dedicated to the youngest of children with developmental delays. She has occasionally spent her own time watching my kids. She tells me that we don't have to pay her, but if ANYONE deserves the money, it is her. Her family has their own struggles, including some hefty medical bills. They are struggling financially so the extra cash from babysitting comes in handy. The WHOLE family is awesome with the kids. It may be months between visits to her house, but she is pretty much it. What I wouldn't give for a girls night out and some girls to go hang out with. I wonder what it would be like to come home to a house that is somewhat livable. I dream of the day when I don't have to scrape poop out of carpet and off of walls... Or change diapers for that matter. It would feel like I hit the lottery if, and when I hear my older son say " thanks, mom". I know, this too shall pass, but for right now.... Don't mind me. I am just going crazy.