Update

There has been quite a lot going on. I have run the gamet of Doctors and specialized. I spent weeks crying my eyes out, and hours yelling at someone or another. It took a toll on S and my relationship. It was a hard few months, and the holidays were a big change for both of us. I am to stubborn to give up, and she is loyal to walk away. Thank God for little blessings, and so we made it. Now, I look back and am glad we went through it together as a team. 

Little man is still driving me crazy, and medicine is only helpful on somedays. We finally got his wheelchair a few weeks ago, but I am still fighting the school tooth and nail.

It seems the processes are long and never ending. It gives me a headache daily. I started school a few weeks ago, and at first it was easy to fit into my schedule. But as the semester goes on it seems to get harder. I hope I can keep up. We got a xbox a few weeks ago, and some days I just want to rip it out of the wall. 

 

I am now on the board of a great group of women…and they are helping me raise fund to help treat little man.

Life goes on as they say!

stuff

So I found a psychologist for the kids. I will be meeting with her myself on Monday…hopefully she can help our family work as a team. We have a super busy weekend plan…I hope it gives S and I time to relax and enjoy each other. We need thos reconnection moment!

Small pleasures

I have been thinking about rushing..and happiness..and the small pleasures that I am so desperate to get…

When we feel depleted and drained, and when we have no time or energy devoted to the things that give us pleasure, we start to feel exhausted, resentful, and angry. “All work and no play makes Jack a dull boy.”

So many pleasures come at a cost: cookies cost calories, movies and books take time and focus, a museum costs the price of a ticket. It’s good to have a list of treats and pleasures that have a very low cost in time, energy, or money.

So one of my bedrock new prinicples are going to be I can’t change anyone but myself. It’s so easy to imagine that I’d be happier if only other people would behave properly, but I can’t assign resolutions to anyone but myself.

So I think the first step is BIG HUGS and WARM WELCOMES!!!!

It takes no extra time, energy, or money, and it makes a big difference in the atmosphere of my apartment. I want family members to feel acknowledged and welcomed, every time they walked through the door. It’s important to S and it’s important to me. I know that I’m bad about this, myself. It’s hard to be interrupted when you’re in the middle of something, but this is important.

So I think it should be a new rule in the house…and so this weekend While S is gone I am taking the kids to get a canvas and some stickers…and I am going to let them paint a sign that simply says “Give warm greetings  and Farewells” ! This means everytime someone leaves or comes home we all give them warm hugs.

As Benjamin Franklin pointed out, “Human Felicity is produc’d not so much by great Pieces of good Fortune that seldom happen, as by little Advantages that occur every Day.”

It’s a small beginning….but it’s a start…to happier, healthier home…and it’s a little pleasure.

Life and worries

So the specialist nurse came back yesterday, and said that there is no way The Man could have the genetic marker for DMD and have the CK level as low has he does. So my son is officially a medical mystery. You know what? This doesn’t surprise me, but piss me off. How can you put me through this again! Really! Again…Oh and the austism clinic sent us to neuropsych because they don’t treat DMD? And guess what that appointment is not until Jan! Jan really!

The Man is doing better, he is openning up to S, and they are building something that could have great potential! I am really excited, we might have turned a corner! Let’s hope this coming weekend with the L doesn’t make him back track. On the other hand E is having problems, I don’t know if its the age or jealousy but she is all attitude! I hope we get that sorted out.

S and I are growing closer, and I think we are working on some of our miscommunications. Let’s hope this continues to. The easier home load really lets me relax most days! I look forward now and see happy times together!

Keep me in your thoughts I need the positive

The Mom

One week later

It’s been a week since I started I started this blog. The days have meshed together…and the melt down that consumed my son on Monday night was only lighted by the sticker chart. For three days, it looked like I had my boy back. He even came up to me and told me he loved me…and missed me. It was sweet boy that I remember before all the anger and rage. Until he went to his father’s house, and came back defiant…hateful…rude..sigh…what is going on there to make him so???? I did give him steroids yesterday so I will just have to wait and see if it happens next time he comes back from there. We were at the game store, and he had been ramping up all day to a meltdown. He started taking the games off the shelf one by one, while I was on the phone, and by the end of my conversation he had somewhat of 20 games. I tried to convince him to put them up, and helped him find the spots to put them back. But when he wanted “just one more game” I almost gave in…if I give him the one game than I can avoid the meltdown I see coming. I tried to reason “Son you alredy have two games for this week, if you are good and earn your stickers you can have that one next.” his response was so sweet but so manipulative “Please mommy I will be so good just one more, I really need it.” When he wouldn’t give, I tried counting, which normally works. But the store was closing, and it was time to go. So I grabbed the game and put it up…and than tried to run after him for the next one he had grabbed. I finally got it, and he grabbed two more off the shelf. I put them back and carried him side ways screaming out the door. When I put him down to open the doo he almost ran out in the street. I tried to keep him in his booster but he is so strong he kept using all his force to get out of the car. So I had to force him with one hand and try to do the seat belt with the other. It was a battle he kept holding it, and that allowed it not to come from the base so I couldn’t get it around him. After much clawing and screaming from him I had to yank the thing (and there by yank him) to get out far enough…and then when he kept screaming to where i couldn’t get it buckled and hitting me I had enough and I tapped him on his hand (  i felt horrible after) but i just needed that moment of shock to get him to let me buckle it. But that didn’t stop him, once I had it buckled he kept openning the door. Finally I had to lock it from the inside and push the door closed against his weight to get it clasp. Than he screamed “I’m sorry go back momma please…” over and over while he kicked his seat. I ignored him and tried to say to myself over and over…I love you I love you I love you. When home I took him to his room and got down on his level..and told him to have a time out and why. I got the timer and set it…and when he got up I reset it..I told him once why i was resetting it. But if I tried to put him back into time out he would rage out of control. SO finally I turned my back to him at his door way..and he sat in the middle of his room and didn’t hit…didn’t scream..and just as the timer went off he calmed. I explained to him the why’s and when he was done asked for a hug..which he refused..but he did ask for his “self soothing addiction” the wii which i gave him..and then he was fine…and i got him crashed out a hour later. I hope he comes home from school a much happier boy!

The Mom

The beginning

The beginning. A Austism mom’s journey

The beginning

So this is the beginning of my blog journey. I don’t know how often I will write here…but I need to put it all down on virtual paper so to speak. So let me start with background:

There is V, my 15 year old who lives with her dad most of the time…and is normal.

There is E, who is 7….she has adhd, sensory, cognitive delays, and is a carrier for Duchenne’s Muscular Dystrophy.

Then there is D or the Man as I call him…he is 4…autistic, sensory, ocd, and we are going through the finally stages to confirm that he has Duchenne’s Muscular Dystrophy

Then ther is me…the mom…or H….and my girlfriend who I threw to the wolves really…poor girl she is S.

Then there is the Ex…I call him L, but that’s my little secret.

I am the one who researches, calls, pushes, and advocates my chidren since the day they were born. My two youngers, especially the man, were premature. They suffer delays not only from that but from L and my genetics combined. I feel guilty about this a lot…espeically with the man because several doctors told us we were risking our future children with problems and should really consider not having more until E’s test were complete. But I always wanted a large family, and with God on my side I felt he wouldn’t give me more than I can handle. To be honest, he hasn’t…I have handled each pitfall. I have smiled and held the man when he screamed at the top of his lungs right in my face because I wouldn’t turn his wii back on.  It took three hours last night to get through the evening routine, some hand over hand, some waiting it out, some time out (that doesn’t work) and mostly crying and screaming and hiting. Then he crashed…he was out immediately.

It’s hard…very hard to stay patient and calm. It’s also hard to feel like you can than comfort and build any other relationship. Cause all you want to do is sit in a long bath and ignore the world for while. When you have a new relationship that needs nuturing…this lack of general support, comfort, or understand…this lack of any emotion at all because you are so exhausted from trying to stay calm and not show any emotion (because if you do he will read it and run with it)….it destroys relationships…marriages…friendships…families.  Have you ever heard of the saying it’s not the disease but the symptoms the effects….well that’s what living in my house is like. It’s not his inability to compute, or his non-understanding of reason or time or space…or just his fears. It’s the way that I have shut off to help him get through it that is devasting to everyone around us.

We tried to go to galveston last week and I say the kids and I had a wonderful time…but I had to give..I had to avoid..I had to duck..I had to stay longer…or allow more things….why because sometimes I just need that hour..that weekend of happy him. Unfortunately, it has played a major toll on S and I…and I fear we won’t recover. She believes in structure and routine, in order and direction, in action and consequence, in appearance (because they might get made fun of) to protect them, in not doing something risk (because they might get hurt), and with the man….and the E together…welll this just doesn’t work. E learned a long time ago if she gets the man to do it (get that last cup of milk, get a bit of grapes after lights out, get him aggrivated over a game (then she won’t have to play with him), and the list goes on) that she will ultimately get what she wants. So she enjoys triggering him. She enjoys the attention it brings her…especially I think from S. Which I want…I want them to grow together, I want E to go to her for support in those moments. But man I can see E’s wheels turning.

So over the next few weeks…I have doctor appoints…therapy calls to make (maybe I will find a therapist who doesn’t give up) and a public school to request service from…

I need a breath and a pray….and a long bubble bath with white wine and candle light….

H