I am at this very moment watching my autistic son chew the foam off his Nerf protective case for his DS GameBoy thingy and patiently waiting for his nighty-night drugs to kick in. It is very loud right now because he is listening to classical music on the tuner, Christmas music on i-tunes, watching his plane crash on the Wii, jumping up and down and vocalizing happily because he is so happy to be alive! But I am peaceful. I am relaxed and comfortable because Tanner went to his Day Program today for six hours. If not for this "government handout" I would be crazy by now.
For the first twelve years I did it without help. In the very beginning, the first four years, life was manageable. I had a developmentally delayed son and soon a perfectly typical daughter which gave people the impression that I had twins. Both children took all my spare time but I honestly loved it. I had two cubs to feed, bathe, entertain and keep safe plus I had a part-time evening job and a husband who took up the slack. Being a mother is a joy and at that time I was proud that I was up to the challenge. Then Tanner's behavior started to change from being passive to being aggressive. He was pinching and biting and scratching and head banging and self destructing. He was restless and vocal and inconsolable.
From age four to eight I was in the dark about how to live my life. My only outlet was going to my job, an escape from a crazy child and a despondent husband. Somehow during these dark days, a prelude to blacker days, I was pointed in the direction of a clinic dedicated to neuro-behavioral issues. This is when psychotropic medications entered our lives...so many ineffective medications. At least there was a modicum of help in the sea of despair. We tried to get the kid's behavior under control through pharmacological help. A decision I would never regret even though I would encounter resistance from dad for decades. The clinic also referred us to various programs which could help alleviate some of the stress and responsibility of caring for a special needs child. At the time my husband was absolutely mortified to be the recipient of any "assistance", so I spent the next four years hanging by a thread. These four years were unspeakably difficult and I was unspeakably silent about my travails.
Gratefully I sent the boy off to school where the special ed. department did their best to integrate him into a system that really didn't want him. Daily I worried about his impact on others; would he hurt someone, would he disrupt to much, did the teachers care for him? Then when he got home I worried about the state of our home; would his sibling be damaged, would the marriage survive, would he be safe as I slept. I needed help regardless of my husbands denial.
Since my desperation was allowed to fester for years I really couldn't wait much longer for relief, so I wrote a letter to the DSPD coordinator. I honestly articulated my desperation. There were three key issues which got me immediate services. #1) I fear for the safety of my daughter ( the boy routinely attacked her) #2) I fear for the safety of my son ( I might hurt him) #3)I fear for the security of my marriage ( never mind). All were true. I swallowed my pride and admitted that I had lost control of the basics of survival. My family was in danger.
The point is that I didn't have let things get so bad. I should have had the sense to accept help when it was offered. I should have trusted my instincts and not have been controlled by my husband's pride. Now I can say that my boy is happily involved in an educational setting dedicated to kids with disabilities. He is overwhelmed with joy when he goes to a "government sponsored" after school program three times a week. And I am happy to go to a movie on a night that I don't work thanks to Respite Care (another government funded program for caretakers of special needs kids). All in all, this help has never been so deserved and so appreciated and I have never been so "ok".
DO THESE THINGS NOW:
1) love your autistic kid so much that you accept help from the government despite your belief system. ie. respite, community outreach, after school, summer programs etc. ALSO don't be afraid of medication ( if he sleeps due to meds then you sleep too, win-win)
2) love your unaffected kid so much that you dedicate a special day every week just for her (by using respite care)
3) love your husband so much that you don't allow him to make uninformed decisions which can ultimately ruin your relationship due to unnecessary hardship.
4) Your autistic kid can be an absolute joy to you if you give up your pride and seek to "spread this joy" to other qualified individuals. By the way, you are not the only one that will love your quirky, funny, unique kid.
NEXT UP: Elopement...(I don't think this means what you think it means)
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