I am doing my best to try and stay mobile despite my hip and lack of time, and also get the kids outside so that they aren't always stuck inside. We decided to take a walk to the local "convenience mart" in search of some coveted Hostess Cupcakes and/or Twinkies so we could make a little extra holiday cash. I asked if anyone wanted to go with me, all four said yes...so off we went.
At first it was a lovely walk. There was only 1 story of how sad Mommy would be if someone got hit by a car because they weren't behaving (that's actually really good considering all 4 went and I only have 2 hands). The walk up there was peaceful. Everyone listened fairly well. No one bolted for the street. We were able to stay as a group, and as a result I didn't look like a caffeinated squirrel with Tourette's trying to keep track of all of them.
When we got to the store...there was a normal amount of whining that it wasn't fair that they couldn't get everything that they wanted...but it was subdued fairly easily. We gathered up our goods and the remaining 4 packages of Hostess Cupcakes and made our way to the cashier. They all listened to directions and waited quietly with grandpa hands by the front door.
It all when to crap when we went outside. There was no longer the threat of not getting anything because it was all in a bag. He immediately shot for the road, Wee One ran circles around Too Tall, and Bean, well she was oblivious and kept on walking towards our place. After I caught him, we were able to gain Bean's attention and wrangle Wee One into a somewhat orderly fashion and begin our route home. The only way that I can describe him is to liken him to an untrained Pit Bull (and that will be his name from now on). As I tried my best to hold all 3 bags and the paper while holding his hand as he lunged and pulled all the way up the street, I was trying to keep the others safe as well. Too Tall took over some of the bags half way home and that was a huge help, but I was still quickly loosing grip on Pit Bull.
3/4's of the way home we had to stop. Pit Bull had gotten too close to getting hit by a car for comfort. I decided that I needed to readjust my grip on him. I was also becoming increasingly aware of the eyes scorching holes in my back, as I am sure that they thought they may have been witnessing some kind of child abduction. I did my best to wrap my hand around his bicep to control some of the lunging and pull aways, and it seemed to work for a bit. Then he started to punch me in the hand, I now have a huge bruised welt on my right hand.
The end was in sight. I could see the front door, and, unfortunately, so could he. This...well this is when the screaming started. I know that I looked like I was abducting him now because the people that moved in yesterday came out of their home to ask if everything was ok. Too Tall said yes. Pit Bull called me a stupid bunny head...and they went back inside. It looks like I am going to need to take them some cookies and explain what they witnessed and moved across the street from.
We probably won't be going on another walk anytime soon, well at least not without another set of adult hands. However, now that we are home, he has settled into being a different child. I even got a nosey, an apology, and a snuggle.
Sunday, November 18, 2012
Friday, November 16, 2012
There was no call (Part II)
There was no call...because there was no wrong on his part. It turns out that Bean and the Tall One didn't see anything, because nothing happened. As it also turns out everything that he was accused of was the Bus Driver's nephew.
When they got off the bus yesterday it was a different driver dropping them off. The New Driver wouldn't allow the "nephew" off until his mother had been brought to the stop. She informed the Mom what her son had done and blamed it on another student. She then proceeded to tell her that when the Regular Driver resumes her route in 1-2 weeks, they will no longer be able to ride the bus to and from school.
Late this afternoon, I did receive a phone call. It was the principal calling to apologize for the accusations against him, and that they were deeply sorry.
I actually feel kind of bad. I was convinced that he had done something, that we were going to get a phone call from the school, and I was trying to figure out how to get him to school and still get to work on time. What he was accused of wasn't out of the realm of normal behavior for him, and I feel terrible that I didn't trust him no matter how much evidence was piled up against him.
When they got off the bus yesterday it was a different driver dropping them off. The New Driver wouldn't allow the "nephew" off until his mother had been brought to the stop. She informed the Mom what her son had done and blamed it on another student. She then proceeded to tell her that when the Regular Driver resumes her route in 1-2 weeks, they will no longer be able to ride the bus to and from school.
Late this afternoon, I did receive a phone call. It was the principal calling to apologize for the accusations against him, and that they were deeply sorry.
I actually feel kind of bad. I was convinced that he had done something, that we were going to get a phone call from the school, and I was trying to figure out how to get him to school and still get to work on time. What he was accused of wasn't out of the realm of normal behavior for him, and I feel terrible that I didn't trust him no matter how much evidence was piled up against him.
Thursday, November 15, 2012
The Evaluation
I can now say that a full psychological evaluation for a 5 year old is intense. It is time consuming. It is draining, emotionally and physically. It makes you look at things in a different light.
It has been a very long ordeal :
Week 1 -
Make the call for additional help. We were at our wits end with the way things had escalated since school started. Yay we made it onto the waiting list for intake!
Week 2 -
We waited. And we waited...we called and left a desperate message to get moved up on the list...and we waited some more.
Week 3 -
We got a call! Yippee...a call to let us know that someone in intake would be calling to schedule an appointment in the next 48-72 hours.
(Time Out)
At this point...we were really beginning to worry about our decision to go with the firm that we did. 3 weeks to get a call saying that someone was going to call us. I made up my mind that if they didn't call in 48 hours we were going to start looking at other options.
Week 4 -
In the final hour, intake called. It was not a receptionist or an assistant...it was the actual intake clinician that was calling us. Impressive. We set an appointment to come in for an initial consultation and observation.
Week 5 -
We met with the clinician, and, boy, did she get the full brunt of him. I decided to strategically set up our arrival time so that he wouldn't have time to adjust to his surroundings. Typically we arrive a goo 30-45 mins prior to any appointment for "he" so that he can get used to his surrounding and work out all his anxiety and energy. That day we arrive 5 mins early, had filled out and faxed back the paperwork to expedite the process and we were ready to go. We were ushered into a 5' x 7' room. He literally bounced off the walls. He did a head stand on the edge of a couch. He climbed on top of her desk, knocked over her computer. He screamed. He spoke his gibberish. He voiced his frustration with being there. I was asked why we were there. What we hoped to change. Would we be willing to medicate? Would we be willing to isolate him while getting the dosage right? Had he hurt himself? Had he hurt anyone else? Had he had a full evaluation before? What testing had he received? How recent was that testing?
I feel like we had more questions than answers when we left. I felt horrible for not taking him sooner. I cried, a lot.
We left knowing that we weren't imagining what was going on. We learned that we had made a lot of concessions in our lives to keep him stable. We learned that he needed to learn to make adjustments to cope. We learned that he didn't neatly fit in any given box. We learned that our insurance covered a full evaluation (yippee). And we learned that we would be meeting with a full fledged psychologist who would be calling, in the very near future.
Week 6 -
I met with Ms. J to answer some really basic questions about him in her office, without him. Why hadn't a full eval been done before? What meds did he take? Where has he been to be evaluated What had been ruled out? Did he have any physical impairments? We discussed how long, in time frames and averages, the evaluation would take. We talked about what would be discussed, that I would have to sit outside and wait for him. I signed a ton of disclosures saying I consented to testing, leaving him alone, picking him up on time, etc. Then we set up the next 2 appointments.
Week 7 -
He met with Ms. J and I was given a multitude of multiple choice questions to answer...and oh goodie...a stack for his brand new teacher too! Some of the questions seemed redundant, some felt impossible to answer. He hid under the table the entire first session. I met with a clinician to talk about somethings that the law requires in the way of accommodations for him and what the school is required by law to expect from him, and I set up an appointment for myself. They noticed that I seemed to be taking a lot of the burden on my self. That I had a lot of blame festering inside of me. Things were coming to a boiling point and that was why I was asking for help for him.
Week 8 -
This week went better I feel. He drew some pictures. He answered some questions about feelings. He answered some questions about bullies at the school. How he feels at school came up. What he does at home. Does he get in a lot of trouble? He only hid under the table the entire time. I turned in our part of the paperwork, and we scheduled a new appointment.
Week 9 -
More of the same. This week he put together puzzles and finish patterns. They talked about friendship. She tried to get him to make up a story.
Week 10 -
This was the last week he went to see Ms. J. They finished up the patterns that he was too frustrated to do. They played with some toys. They played pretend. We set up a time for me to come the next week and complete a parent interview. I was warned that this would take 2-12 hours and needed to be completed in one session.
Week 11 -
5 hours. That's how long my parent interview lasted. It would have been awesome if I had been advised to take the baby book for him so that we could look at milestones like first words, when he walked, first sentence, potty trained. There were more abstract questions like do you feel he acts strange? No he acts like him...How do we help him cope? He does he self soothe? What facial expressions does he make? Are they appropriate? Does he talk to strangers? Does he seem to recognize people? And so on and such forth. It was grueling. It made me realize that sometimes we make concessions for him...like we always start conversations with questions for him to get him to speak. We automatically abide by rituals so we can control outbursts. We accepted a long time ago things in him that aren't in the realm of normal. I realized that bringing him places early so that he could adapt...well it prevented everyone from getting a full picture of what was going on earlier.
We will see where all this has landed us in the next 2-4 weeks as all of the evaluations are scored and processed. So I will be on the lookout for yet another call to come about him...hopefully we get some answers soon.
It has been a very long ordeal :
Week 1 -
Make the call for additional help. We were at our wits end with the way things had escalated since school started. Yay we made it onto the waiting list for intake!
Week 2 -
We waited. And we waited...we called and left a desperate message to get moved up on the list...and we waited some more.
Week 3 -
We got a call! Yippee...a call to let us know that someone in intake would be calling to schedule an appointment in the next 48-72 hours.
(Time Out)
At this point...we were really beginning to worry about our decision to go with the firm that we did. 3 weeks to get a call saying that someone was going to call us. I made up my mind that if they didn't call in 48 hours we were going to start looking at other options.
Week 4 -
In the final hour, intake called. It was not a receptionist or an assistant...it was the actual intake clinician that was calling us. Impressive. We set an appointment to come in for an initial consultation and observation.
Week 5 -
We met with the clinician, and, boy, did she get the full brunt of him. I decided to strategically set up our arrival time so that he wouldn't have time to adjust to his surroundings. Typically we arrive a goo 30-45 mins prior to any appointment for "he" so that he can get used to his surrounding and work out all his anxiety and energy. That day we arrive 5 mins early, had filled out and faxed back the paperwork to expedite the process and we were ready to go. We were ushered into a 5' x 7' room. He literally bounced off the walls. He did a head stand on the edge of a couch. He climbed on top of her desk, knocked over her computer. He screamed. He spoke his gibberish. He voiced his frustration with being there. I was asked why we were there. What we hoped to change. Would we be willing to medicate? Would we be willing to isolate him while getting the dosage right? Had he hurt himself? Had he hurt anyone else? Had he had a full evaluation before? What testing had he received? How recent was that testing?
I feel like we had more questions than answers when we left. I felt horrible for not taking him sooner. I cried, a lot.
We left knowing that we weren't imagining what was going on. We learned that we had made a lot of concessions in our lives to keep him stable. We learned that he needed to learn to make adjustments to cope. We learned that he didn't neatly fit in any given box. We learned that our insurance covered a full evaluation (yippee). And we learned that we would be meeting with a full fledged psychologist who would be calling, in the very near future.
Week 6 -
I met with Ms. J to answer some really basic questions about him in her office, without him. Why hadn't a full eval been done before? What meds did he take? Where has he been to be evaluated What had been ruled out? Did he have any physical impairments? We discussed how long, in time frames and averages, the evaluation would take. We talked about what would be discussed, that I would have to sit outside and wait for him. I signed a ton of disclosures saying I consented to testing, leaving him alone, picking him up on time, etc. Then we set up the next 2 appointments.
Week 7 -
He met with Ms. J and I was given a multitude of multiple choice questions to answer...and oh goodie...a stack for his brand new teacher too! Some of the questions seemed redundant, some felt impossible to answer. He hid under the table the entire first session. I met with a clinician to talk about somethings that the law requires in the way of accommodations for him and what the school is required by law to expect from him, and I set up an appointment for myself. They noticed that I seemed to be taking a lot of the burden on my self. That I had a lot of blame festering inside of me. Things were coming to a boiling point and that was why I was asking for help for him.
Week 8 -
This week went better I feel. He drew some pictures. He answered some questions about feelings. He answered some questions about bullies at the school. How he feels at school came up. What he does at home. Does he get in a lot of trouble? He only hid under the table the entire time. I turned in our part of the paperwork, and we scheduled a new appointment.
Week 9 -
More of the same. This week he put together puzzles and finish patterns. They talked about friendship. She tried to get him to make up a story.
Week 10 -
This was the last week he went to see Ms. J. They finished up the patterns that he was too frustrated to do. They played with some toys. They played pretend. We set up a time for me to come the next week and complete a parent interview. I was warned that this would take 2-12 hours and needed to be completed in one session.
Week 11 -
5 hours. That's how long my parent interview lasted. It would have been awesome if I had been advised to take the baby book for him so that we could look at milestones like first words, when he walked, first sentence, potty trained. There were more abstract questions like do you feel he acts strange? No he acts like him...How do we help him cope? He does he self soothe? What facial expressions does he make? Are they appropriate? Does he talk to strangers? Does he seem to recognize people? And so on and such forth. It was grueling. It made me realize that sometimes we make concessions for him...like we always start conversations with questions for him to get him to speak. We automatically abide by rituals so we can control outbursts. We accepted a long time ago things in him that aren't in the realm of normal. I realized that bringing him places early so that he could adapt...well it prevented everyone from getting a full picture of what was going on earlier.
We will see where all this has landed us in the next 2-4 weeks as all of the evaluations are scored and processed. So I will be on the lookout for yet another call to come about him...hopefully we get some answers soon.
There was no call
Yesterday, my husband and I were all geared up for a very specific phone call from school. We were really hoping to get the final version of what happened at the bus stop a couple afternoons ago. I went to work and had my phone on the quietest setting that could still be considered audible. Justin set an alarm for every hour to check his, but....there was no call.
I don't know why we didn't get a call. Did they decide it wasn't a big deal? Did the conversation ever happen? Did the bus driver decide not to "turn him in" so to speak? Are they going to call on a different day?
One thing I do know is that I can't just call and say, "Hey, so 2 of my kids say that there brother did something really bad at the bus stop on Tuesday afternoon...are you going to be talking to him?" We don't want to draw unwanted attention.
I do really want to know what happened though. I just can't believe after all that gearing up that there was no call.
I don't know why we didn't get a call. Did they decide it wasn't a big deal? Did the conversation ever happen? Did the bus driver decide not to "turn him in" so to speak? Are they going to call on a different day?
One thing I do know is that I can't just call and say, "Hey, so 2 of my kids say that there brother did something really bad at the bus stop on Tuesday afternoon...are you going to be talking to him?" We don't want to draw unwanted attention.
I do really want to know what happened though. I just can't believe after all that gearing up that there was no call.
Tuesday, November 13, 2012
Somewhere in the Middle
I don't know all the details yet, but apparently he will be going to the principal's office tomorrow. Bean says he flipped someone the bird, Tall as me says he pushed someone, he says he got pushed and did nothing. One thing that I know is that he is normally not calm enough to do nothing when he is pushed...so I know something happened.
After tucking the brood into bed, I decided that I would ask their dad what happened...is this a tall tale to provoke him or is there some truth to it? He couldn't tell me what happened. My husband decided that since the bus stop is 12 yards from the front door...he's not going to be bothered to go anymore.
In fact when I asked him why after the scare we had 2 years back, he hung up on me. So I called back thinking...obviously we got disconnected...cell service isn't reliable on that side of town. He was really angry at the idea of going to the bus stop to pick up the kids.
Not only was the fiasco from a ways back where the school called because the kids failed to arrive. Not only do we live by a very busy street and intersection. Don't forget the near misses from when someone is too busy to stop for the bus...a kid almost got hit last month. Not only is he easily provoked and needs that extra bit of supervision...but his bus driver isn't the most attentive person in the world so whenever something does happen it's so lopsided it's like having a 6th grader and a toddler play on the teeter totter...it just isn't evenly matched.
So now that I have vented, I feel a bit better. Still really angry that he doesn't see why it's important to me, and how he can throw my perceived fear for their safety back in me face...but better to get it out than let it fester. *Twitch*
All I am asking is that we meet somewhere in the middle...so you don't want to go to the bus stop to mingle with other parents...fine...I get it...you only speak 1 language fluently. So instead stand at the front door, or even just look out the front window. But this whole it's whatever thing isn't cutting it, you don't like to follow the rules...I get it...but dang...it's our kids. I don't think I can handle another call from the school saying that he has done something again...or heaven forbid that something has happened...I just can't do it.
After tucking the brood into bed, I decided that I would ask their dad what happened...is this a tall tale to provoke him or is there some truth to it? He couldn't tell me what happened. My husband decided that since the bus stop is 12 yards from the front door...he's not going to be bothered to go anymore.
In fact when I asked him why after the scare we had 2 years back, he hung up on me. So I called back thinking...obviously we got disconnected...cell service isn't reliable on that side of town. He was really angry at the idea of going to the bus stop to pick up the kids.
Not only was the fiasco from a ways back where the school called because the kids failed to arrive. Not only do we live by a very busy street and intersection. Don't forget the near misses from when someone is too busy to stop for the bus...a kid almost got hit last month. Not only is he easily provoked and needs that extra bit of supervision...but his bus driver isn't the most attentive person in the world so whenever something does happen it's so lopsided it's like having a 6th grader and a toddler play on the teeter totter...it just isn't evenly matched.
So now that I have vented, I feel a bit better. Still really angry that he doesn't see why it's important to me, and how he can throw my perceived fear for their safety back in me face...but better to get it out than let it fester. *Twitch*
All I am asking is that we meet somewhere in the middle...so you don't want to go to the bus stop to mingle with other parents...fine...I get it...you only speak 1 language fluently. So instead stand at the front door, or even just look out the front window. But this whole it's whatever thing isn't cutting it, you don't like to follow the rules...I get it...but dang...it's our kids. I don't think I can handle another call from the school saying that he has done something again...or heaven forbid that something has happened...I just can't do it.
Saturday, November 10, 2012
Making Bubbles
Since I haven't been sleeping well lately...I crashed on the couch this afternoon vegging with the hubs. I don't know what time it was when I crashed...but he didn't wake me when he left for work at 4:30 and as a result I slept until about 6:30 underneath a pile of little boys while the Bean worked on her clay sculpting in the kitchen (she is amazing at snowmen and turtles now).
When I got up, the boys got up. The fighting started in the dining room and quickly escalated to a flash dash up the stairs for the Bean. Now he is upstairs making bubbles in the tub (not with his mouth) just to annoy his sister...
Next up Sharpie Tattoo Party!
When I got up, the boys got up. The fighting started in the dining room and quickly escalated to a flash dash up the stairs for the Bean. Now he is upstairs making bubbles in the tub (not with his mouth) just to annoy his sister...
Next up Sharpie Tattoo Party!
Thursday, November 8, 2012
There are Things
As horribly as he is coping to all the changes in his life, I cannot honestly say that I am doing much better. I really thought that we were getting a handle on it all in the past year. It seemed as though we were starting to settle into routines, having a bit of normalcy or at least a sense of it. Now that school has started, for lack of a better term, there is a whole lot of crazy in our lives right now. Every single time, without fail, we start to see a bit of progress there is a tsunami that comes and just washes it all out to sea.
New things are setting him off. The collar of his jacket, it's choking him. His eczema in in full swing, so him bum is a rather large scab of sorts. It's the end of the world if you walk out/through a door without sticking your tongue out at him. Chores as simple as wiping up the juice that dribbled on the floor take hours because he swears that the spot on the wall is talking to him. Homework assignments are almost a no go, as he gets so frustrated when his letters don't turn out the way he sees them in his head.
Things I thought that we were past are setting him off. His brother sat too close to him on the floor to watch a movie. A friend bumped into him while playing football. Bed wetting. Running naked through the house because his clothes are too itchy or tight.
I am cautiously optimistic that the path we are on now, might be another piece to the puzzle...we seem to accumulated a lot of pieces, but none of them fit together at all. I feel like we are putting together a puzzle that is literally just cardboard...no picture to reference, no illustration on the pieces...trying to cram it all together until they kind of fit before time runs out. Any success that we have...I fear pushing for more. I am afraid that it's all going to come crashing down without provocation.
I am terrified that these struggles are not only hurting him, but that they are hurting the other kids. As though as he is, his older brother is that much more sensitive. His sister has her own struggles academically that she pushes really hard to overcome. And his little brother, I am scared that he is going to think that all of this is normal. I am scared that they feel like they are in a damaged home...and I mean more than the holes in the wall from him throwing something, I mean all the anger, the battles over nothing, the different sets of rules for him and them, the exhaustion, the attention missing because it cannot honestly always be afforded to them, and the feeling that I don't love them as much.
We are trying to cope with our new normal. I am working 11 hours a day away from home so we can afford insurance to cover the buffet of services, therapy and drugs (that he will need) that the state does not pay for. I no longer spend time with friends away from my home, because I am ushering him around to 2 different therapy sessions a week (could be more soon) at $50 bucks a visit. I come home to housework and a husband either running out the door for his job or heading for a catnap. Either way...when I am home, I am the biggest target of his rage, frustration, and discomfort. I am the first person he screams at even when I have just walked in the door. I am the first person he hits when he gets frustrated with a task whether I asked him to complete it or someone else did. I am the first person he spits on because his food tastes weird on his tongue. On the other hand I am the first person to get a "hug" when he is sad. I am the first person he asks to put his cream on when things get too irritating. Mine is the first bed he visits when his pillow sounds too loud like the ocean.
Since we started seeing the new Therapy Group we have learned a lot. He fits in a lot of boxes such as... Pervasive Development Disorder - Not Otherwise Specified (PDD-NOS), Attention Deficit Disorder (ADD/ADHD), Sensory Processing Disorder, and Bipolar. We have been through 5 weeks of rigorous testing with him. Justin and I have answered 70 pages worth of Scan tron Sheets of questions (I never want to have to distinguish between Always, Usually, Often, Sometimes, Occasionally or Never...ever again). His teacher had an additional package to fill out, though not as lengthy as ours. Next week I have a 4 hour interview with his psychologist in which I need to tell her when he reached certain milestones and at what points we started noticing problems. Hopefully over the course of the next few weeks (fingers crossed) we will have some definitive answers and be able to start working towards some permanent solutions.
Until we have those answers, there are things that you never ever in a million years want to think about, and we have to start thinking about some of these things and it is hard.
What kind of life do I want for my son?
How far am I willing to go to get him treatment? Drugs, Therapy, In Home Care, Outpatient Therapy, Committal?
How much of that can we afford?
How is he effecting the other kids?
How many bridges will we burn to get him what he needs?
Is there a permanent solution for this?
At what point would we stop seeking treatment? How far are we willing to push?
What life will he lead as an adult?
If something were to happen tomorrow, in 5, 10, 20, or 30 years how would he be taken care of?
Yet through all of this, people still ask...would you do it all again? If you could change 1 thing about him, what would it be? what were you thinking having that many kids? What made him this way? To those questions, I always answer:
I would do it all over again in a heartbeat.
The only wish I have for him is to have the opportunity to experience happiness in his own skin. In my mind all I see, even through all of this, is a loving little boy. I still see this when all you see is a manic little demon running naked past my living room window. I still see that loving boy when he is kicking and screaming and hitting me. I see this because I know he doesn't want this anymore than I want it for him. I see this because I haven't walked away since it stopped being rainbows and kittens. I still see my baby boy who couldn't quite get comfortable in a Boppy that still managed to look up and smile at me.
I was thinking that my family had a lot of love to give. He may test my patience every single moment of every single day, but I still love him. Yes, I beg for answers. Yes, I beg for things to get better. But no matter what I love him, and I make sure every single day that I see him that he knows that and I will continue to do that until my days are over. There are a lot of kids who don't have these challenges that don't get half the love that he does. He was lucky to be born into our family, and though they might not always feel this way...his siblings are lucky to have him around to teach them compassion and see unbiased love. We still have a lot of love to give
Genetics made him this way. Cracks in the system exasperated the situation. There isn't anything that we could have done differently while he was in the womb, or when he was an infant,toddler or otherwise. He was born this way.
No matter how well intentional...you should know...those questions hurt. How could you think that I would want to change my child...the hand we were dealt...who hasn't wished for a different hand...but how dare you question my love for my child, the size of my family, or accuse me of doing something in a round about kind of way. Those are the bridges that I am willing to burn.
As a special needs parent...I don't want anything different for my child than you do. I have made mistakes, I could use a little extra patience, a little extra joy...but I have learned to do infinitely more with what I do have, and I will keep pushing until he has more, because he deserves it. They all deserve it.
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