I see posts of parents measuring dorm rooms and debating if their sweetums can fit in such small space, and should they set up a meal plan? Should they buy a car or use transit? Its becoming greek to me... Its not jealousy, its just I cant even relate on any level of it. Every 30 days I have to sit down with DDD and mental health workers and create a case plan (for three of my kids) and they ask me the "long term realistic goal for your child". My answers range from "He will be able to recognize a stop sign and safety parameter, and learn how to use crosswalks and maybe get a part time job someday", to "She will be able to recognize when a mood swing is controlling her logic and thus ask a trusted adult if what she is seeing/hearing is really actually happening". These are my GOALS, not even short term ones, these are my best/greatest hopes. (insert how do you get to be a "trusted adult" to someone trusting not even her own mind).
Today our son of 11 years, age 12, had to move to a DDD group home due to severe PICA. His autism is expressed with oral sensory needs that hit a limit that no one could control, not his speciality teacher, his home aide, his parents, nor the specialty hospital. We knew that eventually this would happen but not this soon, we drug our feet because after knowing only us this would be so traumatic no??? The answer is NO. Autism is the gift that can keep giving. He is very black and white and is now "ready for my new roomates mom". After explaining it over and over again by my own choice the last few weeks the only question he ever had was "can I keep my daily schedule the same?". Not the same people, just the same schedule. Its a blessing in disguise, for him only..... For us I remember the 24 week premie that I was told would never eat, walk, or talk. I remember waking up every two hours to change his feeding tubes. I remember teaching him how to read, write, talk, walk.... I remember pouring love into him on full blast, constantly, for years. Praying he would eat someday. Boy god delivered but added a special twist.
Thats half of the story, we have had support in this move for him. People see autism and know its a disability. No one looks at me like I caused his autism, I mean thats would be nuts! However, 7 months ago we went through this with another child, just for mental illness. Bi Polar is no joke, it is also genetic, and one we knew was a real chance in our case, and somehow even though its not my DNA even Ive had plenty of people judge our childrens mental illness, blame me even. Somehow it is taboo to talk about taking your kid for help for mental illness, I mean if you were just "better" as a parent surely mental illness would not occur. I had one therapist tell me "Mental illness is a slow burning fire, and hormones are pure gasoline". This was after I asked "why all of a sudden"? Autism is 24/7, whereas mental illness can convice a person to shape shift. They train themselves to wear a mask depending on the situation, and their mood can stabalize for periods. Telling your son he has to move to a lovely group home is much easier then telling your daughter that the conversation she just heard never took place. Seeing fear in the face of someone you love is terrible, especially when they are fearing their own mind. Its like dementia in a child. It changes you on a celluler level. It is watching your child drown and having not one option to save them.
If you know someone with a child that is struggling remember this: Your judgement cant even touch the level of self doubt we already do to ourselves. Your ignorance speaks volumes only about you, and your lack of empathy makes me more gravely concerned about YOUR mental health than mine or my childs. If you know a parent drowning offer them a few hours to go get their hair done, even a hotel room for the night, a text or a phone call, order pizza, and sometimes you show up when they tell you not to and do their laundry. Last but not least, love their children. They didnt ask to be here, nor be born with this condition. They didn't ask for your indifference or your ignorance, they didnt get to choose their family, and in my case they didnt get to choose their forever family either, they need more people that love them, not less..... And if you know a mom of multiple special needs kids understand that they are walking on a tight rope constantly and if they seem different or unique, odd even, they are. They arent better, they have been forever changed. I no longer consider myself a regular human. I cried for the first time tonight, Ive been on auto pilot for one full month because if I allowed myself to break sooner my son would feel it in me.
What is harder then having your kids "leave the nest" on a regular schedule, is having them "leave the nest" with no real idea of the future. It is stressful to say the least. My husband had a dream last night and said " I had a dream that we made things better for her by convincing her that their are cameras everywhere and she has to play a 'role' during most hours, and then having a panic or freak out room for one hour a day so she can decompress". Heres the crazy thing guys, the "truman show" theory actually made me pause and think for a split second on it. Thats a DDD/ SMI mom for you, constantly thinking outside the box, and then some. You dream of a cure..... even if its truly crazy.
Everyone is fighting a battle you know nothing about, choose kindness, choose grace, grace wins every single time. Do what is right when no one is watching, because I truly believe God is... always.
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