The Now

                Minutes, turn into hours; weave into days, sometimes at speeds so fast it is simply impossible to comprehend.  To find a shirt in the back of the drawer “oh this is his favorite!” yet when he tries it on, his little belly shows, a good indication that time has once again lapsed and he has grown without warning.  Those moments you think “I wish it could stop, I wish he could stay little, just for a while”, but at the same time thank God for being able to see him outgrow yet another pair of shoes.  Those moments he picks up a book and reads it, without asking for help.  I feel sadness because he does not need me to read the pages that we read over and over… and a sense of pride that I helped him become the child that can read that book, himself. 

                Time just keeps passing.  When did my baby turn become a six year old?  Sometimes my heart wrenches as I tell him “You have to try to do it yourself”, as he gets older, he’ll want my help less and less.  I am not sure who I am going to be, when there are no longer shoes that need tied.  I wish sometimes I could bottle up this time and keep a little for a special occasion. 

                Looking back over the last six years, it is amazing how many things have changed.  I never was able to give him 100% of me.  I had a three year old that, while very independent, really needed a lot of guidance and attention.  I went back to school when he was only two months old.  I spent days nursing him, while writing research papers.  Now, looking back, I wish I had savored my time with him more.   I was doing what I thought was right and trying to help our family.

                I remember days he would have to lay awake in his bassinet because Tre was having a meltdown.  Those were the days my heart felt like it was ripped to pieces.  Now, I believe those experiences helped mold him into a child that has no problem going and playing alone.  I guess things do work out, even when you feel sometimes they won’t. 

  I remember days of riding the bus to the store, with him in a baby carrier, and trying to carry bags of groceries and an infant, upstairs to our apartment.  Days I was always in a hurry, trying to get things done.  Days I wish I could go back to and play with him again.  

                Every morning at school he demands I stand at the gate and wave to him, until his teacher walks his class to their room.  He stands and waves and waves.  And I stand and I wave and wave.   I will stand there for those ten minutes, because in a few months, he won’t need me to anymore.  The day he decides he doesn’t need me to stand there and wave, will be a sad day for me.  

                Being a parent creates so many conflicting feelings.  There is fear that they are growing up too fast, mixed with the happiness that they are not scared to be independent.  I find myself concerned that they might get hurt, mixed with a hint of admiration of their courage.  I long to watch them grow up and become a men, while fighting off sadness that the time is going by so fast.  Some days I am wishing they would stop growing, but am terrified that I will miss the chance to see it happen.

                I have made so many mistakes over the last six years.  I have not always made the right choices.  Sometimes when life is beating down the door, you have to answer.   These are the things I want him to remember; no matter what, I love you and always have.  I love your morning grogginess, that you have always had.  I love the way you sneak into my room at night, and I wake up cuddled up next to you.  I love sitting back and watching you play, in your imaginary world, I would love to see things through your eyes! 

                Being a mom has to be the hardest thing I have ever done.  The fact is that life keeps going, even when something goes wrong.  Sometimes all I want to do is sit down and play but I know dinner has to be made, bills have to be paid, and some things can’t wait.  When one child has a meltdown, the other still needs you.  When you have health troubles, your kids still need help with homework.  When you lose a loved one, the kids still need to know they are loved and you aren’t going anywhere.  It is hard to find a balance. 

                Today, I sit here waiting to hear some medical test results.  It’s a pretty big deal and they are a few weeks coming.  I am waiting for the phone to ring, but trying to find ways to keep busy.  When the kids are here, I try to just focus on them.  Sometimes a sadness creeps over me, like “what if the results aren’t good… what then?” I want them to be number one, what toll will it all take on them.    As moms, we have to deal with everything that is going on and still remember that there are little people counting on us, depending on us, and learning from us.  After struggling with anxiety the last few days, I’ve opted to focus on the now.  I’m not worrying about what’s coming, what might happen, or how fast time has flown by.  I’m going to cherish each now.  I’m going to be present.  We never know, after all, what will happen.  Even the moments we feel are so hard now, in hindsight are just a blink of an eye.

The Most Important Gifts we can Give our Children

 

The Most Important Gifts we can Give Our Children

1.       Our time- Real time, look them in the eye and hear what they are saying, time!  If your child is struggling with something, be there for them.  Even if you don’t understand, provide them comfort.  Help shelter them from the storm, when you can.  If they make a mess of something, help them pick up the pieces.  Sometimes you have to let them fix their own problems, but be there, cheering them along.  When we really engage with our children, we learn to understand them.

2.       Our love- Don’t just say “I love you” actions speak louder than words. If your child doesn’t like being touched (hugged & kissed) find other ways to express love.  I like to leave messages on the bathroom mirror with a dry erase marker, or put a napkin note in their lunch J.  Love is a gift that tends to keep giving.  Remember love is patient and love is kind.

3.       Forgiveness- Everyone messes up, don’t hold grudges or they’ll do the same to you. Practice forgiveness, set a good example.

4.       Teach them to accept others

5.       Teach them empathy.

6.       Teach them to use kind words.

7.       Teach them not to judge others.

8.       Respect- If you don’t respect your kids, they won’t respect you. Respect is not given, it is earned. 

9.       Be a role model, be a good example.  So if you want your kids to listen to you, listen to them. You want them to read more, read more. You want them to eat healthier, eat healthier.

10.   Memories- The gift we can give our children that will withstand time is a memory.  One day when our children are grown and look back on their lives, what do you want them to remember?  For me, I want them to remember love, a warm embrace, kisses good night, and waving good bye when they go to class.  Reading stories, curled up on the couch, on an overcast day. I want them to remember me making them their favorite dinners, or eating dinner together each night. I want them to remember that I loved them and I always will. 

 

Think about what it is you want your children to remember…  What gifts do you want to give them? 

I'm sure there are many more I haven't included on this list- I'd love to hear from others on this.  What gifts do you want to give your children?

Teach Tolerance

My son has issues and we are doing all we can to help him become the best he can be.  I worry at night about what his future will hold. I worry about what kind of an adult he will become.  One thing always makes me believe that he will be okay, his heart.  He has an amazing heart. He has compassion and empathy. He cares. He doesn’t litter, because he doesn’t want to hurt the earth or the animals that live on it.  If someone is crying he asks what is wrong. If someone drops something, he’ll stop and pick it up. If an animal is lost, he always wants to help.  He always has the spirit of giving and helping. He is a good person.

I look at other kids and I wonder sometimes if they are being taught values.  I try not to judge but with all the issues Tre has, he still does have morals and values.  I think some of the best lessons have been lost in time.

October is national bullying prevention month.  The more experience I have with bullying, the more I believe it starts at home.  Maybe a parent that doesn’t hesitate to make racial slurs about the neighbors who are too loud, or the family who moved in down the block that has two dads.  Maybe it is a big brother or sister that makes fun of the “Spaz” on the bus, the child who had tics he cannot control.  Perhaps Gramps says “Look at that slob” when he sees an overweight person. Regardless of where bullying starts, that seed, once planted, is hard to remove.  Like a weed that roots itself firmly in the ground, hatred, intolerance, and cruelty are no easier to remove.  PREVENTION is the key.  I do not believe that all parents want their children to be intolerant.  Yet, due to oblivious actions, their children are being predisposed.

                Many children, who are bullies, are bullied. The behavior is learned.  People used to say “Sticks and stones can break my bones but words will never hurt me”.  This is by far the worst lesson we can teach our children, in my opinion. Words hurt. Words leave scars.  Words linger in our mind, long after bruises heal, and blood dries.  

                There are some things that every child can learn from a young age.  Consider these your gift you are sharing with the next generation and hopefully generations to come…  

“Think before you speak…”

“If you don’t have something nice to say, don’t say anything at all.”

“Treat others how you want to be treated.”

Every day lives are lost because of bullying, because of cruelty and hatred.  Teach your children that they never know what someone is going through. Something that seems like nothing big to one person may be very hurtful or unforgettable to another.  Teach them to reach out to others instead of shutting others out.  Most importantly, practice what you preach.  Hypocrisy teaches hollow lessons.  “What you do speaks so loudly that I can not hear what you say” (Ralph Waldo Emerson).

Catching Up...

If you noticed, I didn't post much through summer. Those of you in my shoes, probably understand why! It was a long summer and some things changed.  At the end of summer (and I mean very last minute) Tre decided he wanted to return to public school. This was about two weeks before school started. So we had a wave of ups and downs. He had anxiety but he was excited. There were lots of mixed emotions and he was a little hard to handle during that period of time. We even sat him down and explained that we wanted it to be his decision and we would support him- and he decided public school was what he wanted to do. 

At first I was relieved, I thought of all of the things I could do with my spare time. Both kids in school from 7:40-2? WooHoo!  Then reality came around and laughed in my face!  We made sure we had the right clothes, cool new shoes, the perfect backpack, and earrings (yes Tre is a cool guy now with his ears pierced), I learned how to shave stripes into the sides of his head, next to his Mohawk... Yes we give him some flexibility in those things because there is really so little he has control over. 

So, day one to school started out strong.  We were all excited. We were all positive. We left early, we went to the school, and all was going great...  Then we saw the front gate, and panic set in.  I saw it all over his face, so I was his cheerleader, "You are going to do great, you're going to be fine! You're going to see your friends, and have fun at recess!" Even added in there "You get a break from me!"  Then the tears started. I kind of had to pretend it wasn't happening at that point.  I was on my own.

So we walked a very excited Dominic to his line number- to wait for his new first grade teacher.  I then attempted to walk Tre to his line.  That wasn't happening. He crumbled. He fell to the ground (literally).  People gawked and stared.  It was incredibly uncomfortable.  He has done this in Walmart before but not at the school.  I didn't care what people thought of me, I just worried that kids would make fun of him.  Everyone went to class and there I stood, next to my son- the puddle on the ground. 

The principal attempted to come and talk, and if anyone touched him, he'd yank away.  He was rapidly going downhill on a meltdown train!  It seemed like it was the worst possible scenario.  That is until a little gleam of hope came through the grounds, in the form of a man from the district that oversees the Special Ed Department.  He happened to be on our campus that morning, and he saw what was going on. 

Though none of his efforts were really effective in getting Tre to class, he at least was able to see it.  Last year my IEP request was kind of swept under the rug and I struggled to get him to school, to get him to stay, etc.  The school this year has more special ed programs, so that meant we could get some more help too!

The first week of school I spent sitting in a forth grade classroom.  My 1st grader rapidly grew sad because I'd never seen him go to class, or even seen his classroom.  By week two Tre was the big brother who walked his little brother (who was now crying each morning) to class.  Tre just took on the helping role and did so beautifully.

So far we have had our RTI meeting and other than a few hiccups, we are making good progress.  The school has an amazing school psychologist this year and she has been immensely helpful.  I won't say it's all been perfect but it's a much better scenario than we had last year.  I think a great deal of it also has to do with having a great teacher this year.

My son's teacher has gone over and beyond to help us.  At our RTI meeting he looked at my husband and I and said "I work for you, so if I can help you in ANY WAY, please let me know.  I've been in that seat asking for help, I know how hard it is!"  Which brought us all a lot of peace.  "He gets it!"

Tre's first progress report came home.  He isn't doing great.  He is below basic in many subjects, but he keeps trying.  We do have an incredible struggle with homework, and that is something I'd like to work on modifying more with his IEP.  Otherwise, he isn't calling me every day or every other day to ask me to come get him. He is doing very well, in that respect.  The school is doing more tests and assessments so we can find more tools to help him in the areas he is struggling.

Most recently, we opted to go Gluten-Free. We spoke with him about it for a while and he agreed that it was worth a shot.  He hasn't had gluten in 5 days, he is doing incredibly well.  I am seeing a calmer and more reserved version of my child.  I hope this is not the honeymoon phase but I see hope, I feel calmer, and like I can relax a little bit. Sometimes it feels like I am in this mode of waiting for the other foot to drop.  Those of us who have lived with a child that rages or has meltdowns, often end up with PTSD, it's hard to live in a war zone at times.

Months ago we cut red dye out of his diet and that made a profound difference as well.  About a week and a half ago, it dawned on me that one of his medications was pink. I spoke with the pharmacist and just told her he is allergic to red dye. She managed to get the insurance company to approve the blue pills. This means I also don't have to cut 1 pill in half for him (he would take 1/2 in the morning and 1/2 at night), now he gets 1 pill in the morning and 1 at night.  His doses are more accurate now, which is a good thing. It's hard to cut a pill exactly in half, even with a pill cutter!

Now that things are calmer and we are into a school routine, I hope to start posting more.  I appreciate those of you that are reading our story.  I'm not doing this for attention or pity.  I write because I want to share my story. I want others to feel less alone, I want to share the things I find that help in case in some way they might help someone else. 

Hope you all had a great summer, looking forward to catching up!

Teach your kids to be kind...

Sometimes things happen that are just so disappointing.  After Tre had a little squabble with a neighbor boy a few days ago, he was allowed to play with the understanding that he stay away from that boy.  See we found out that day that the kids on the block were sitting together, calling Tre names.  They were calling him weird, and dirty, and “the white kid”.  So instead of getting mad, he started touching the boy in the arm.  Meanwhile another boy is flipping him off with both hands saying “Faggot!”…  So the kid Tre is touching gets grossed out by him touching him, and punches him in the chest.  Tre snapped and punched the kid in the eye.  I can only imagine what it must have felt like in that moment to have everyone calling him names and making a game up of “Don’t let him touch you, he’s nasty”…  I tell him always to come home.  But what I’m figuring out is that a lot of these kids have targeted him and they pass their time, making fun of him.

Did I run to their parents and tell them all what disgraces to society I felt they were raising? No… I told him he was limited to play with four kids. Two are a brother and sister; the other two are their cousins.  Even Dominic plays well with them all.

Well today the boys went to play with these kids; they’re right across the street.  We had a bathroom flood, so I agreed to let them play, while I cleaned up the mess.  I no sooner get done, sit down, and here comes the big sister of the kid Tre punched the other day.

She starts telling me how Tre is causing all kind of trouble.  I ask “what happened? He is supposed to stay away from him?” She said “Well he is playing a few houses down, but he threw a water balloon at my brother.”  I must’ve had a “you’re kidding me” Look on my face, because she then says “And he messed up his eye the other day!” 

I try to start explaining to her that the other kids have been very cruel to Tre.  I told her that her brother had taken a swing at him, and he punched back. I told her that we have told our son not to start a fight but he can stand up for himself.  She tells me that she doesn’t know what happened because she wasn’t there. I told her I had talked to some older kids (like 18 and 19) who told me the same story Tre told.  Tre’s friends (the brother sister, and cousins) told me the same story too. 

I then try to explain to her that the kids peg him because he is different, that he has asperger’s.  I look up and her little brother is laughing, and I point it out, I say “See he thinks it’s funny!” and shake my head. She tells me “He just isn’t mature enough to understand!” I ask her if she would prefer I kept him home in a cage.  She looked at me funny and said something to the effect of how hard it must be to be his mom…

So I tell her fine.  “Look, he isn’t supposed to play with your brother anyway. Since your mom sent you here to talk to me, make sure she understands what is going on, and make sure she tells him to stay away from Tre!”   She tells me things need resolved before the problems get more serious, and they have to take things further.

Once I get my kids home, in their rooms…  I’m livid at the whole situation.  I am a mix of embarrassed, angered, disappointed. The one thing I’m upset with Tre about is we keep telling him to walk away from conflict.  Then Dominic tells me, “Mommy, the big girl was calling me a maggot out there and Tre got really mad” (replace the m with an f, and that’s what she called him- Dominic just doesn’t know that word).  Then it made sense. He got upset because now they were making fun of his little brother.  A five year old!  What could he have possibly done to make them have a grudge against him? 

I sat here in tears for a while.  Here I work my best to teach my child acceptance.  I know in his heart he is kind. He will play with a child, no matter what limitations that child has.  Yet all these “neurotypical” kids around they end up stealing, lying, calling mean names…  It makes me worry about his future. If it’s this bad at nine, how will it be at 12?  There are days I know he drives me crazy and I wish sometimes that he were just a “normal kid”, but he isn’t and it breaks my heart to know that he isn’t finding acceptance.  I wish these parents could realize for one second how much it breaks my heart to know what their kids are saying to him and what they think of him.  Those nasty words he says sometimes? He learned it from them!  

I wish I could wave a magic wand and move away to a place where people would be more loving, and accepting. No matter how hard I try I can’t take the place of a friend for my child.  Right now he is in his room, because he didn’t walk away. He pushed things farther, and he really should have just come home.  But I need the time to sort through this all.

What would you do? 

April Showers Bring May Flowers... :)

So my last time writing was a month ago. What a roller coaster ride we have been on! First, my dad…  Well without getting too personal and too detailed, he is gone.  Him not living here is going to be better for our family. He had a second heart attack, just two weeks after the first.  His mood became far worse and his resentment towards me grew.  He became violent with the hospital staff… it just got really, really bad.  When he came home, despite trying to act better, he would get very irritated when I would say something. One day I tried to explain to him that he had to accept some personal responsibility for things that have happened and he decided at that point it’d be better for him not to live here.  He didn’t exactly leave on the best terms… helped himself to some things, took some things he shouldn’t have, and said some horrible things. But hey, this isn’t going to be a vent session, so I’ll stop there.

Things were really hectic. We went from not knowing if dad was going to be okay, to finding out his heart was failing.  Then to find out his condition is bad, but not as bad as we were made to think!  I was initially told he could only be released to a skilled nursing facility, and then was getting called to pick him up!  I never knew when the phone rang what was going to happen.  Meanwhile he would call me from the hospital yelling at me to come pick him up.  One day I stood arguing with him in the parking lot at the T Ball field and it was just the worst feeling in the world. There I was trying to watch my son play and couldn’t even do that. 

See all the while this was going on, we still had T Ball, and we had school, and well things were hard!  I’m very much looking forward to summer break. 

I started a new medication to help treat my auto-immune issues and I can’t really say I’m feeling much of a difference.  I have heard some people have amazing changes on it, and well…  It’s been a month now and nothing major has changed for me.

Now that things are quieting down a little bit, I’m regrouping.  When you live with someone you aren’t comfortable with, it is incredibly liberating when you can take your space back.  To feel comfortable again, I didn’t realize how much I just stayed back in my room, avoiding conflict.  I did some reading on toxic people, and well…  it just made sense.

On the other side of things, Tre is doing quite well. We were down to the wire and he had to put in some long hours to complete enough coursework for the year. We started late, so we were a little behind everyone else.  But he got his percentages where he needed them and I am so proud of him.  We had some rough days, and with my dad being in the hospital, I was back in forth for most of April.  We did what we could, when we could. Thank goodness my cousin came to stay with us for a while, he helped so much!  But still, there were certain things I needed to wait to do with him, until I could be there.  But hey, all is well that ends well. 

He finally got to see his therapist again, since things calmed down.  She wants to focus on his separation anxiety.  Helping him be more independent.  I think it’s to a good focus. 

I’m playing with the idea of working on my Master’s Degree.  It’s still a ways off in the future and there are just sooo many things that are telling me I’m crazy for thinking about it.  But I don’t want to regret later not doing it.  And it’s not like we have a big support group to help with the kids.  So, I’m not sure. 

I wish I had some big insightful thing to say to wrap this all up.  So much has happened I feel like life just regurgitated 5 years worth of crap in my lap.  And I’m slowly working through it.  One day at a time…  And regardless of everything else, I get to tuck my kids in at night, kiss them, and tell them I love them.  That makes it all worth it.   And they say April showers bring May flowers... 

the calm after the storm

So, today is my birthday and I was super happy that I got to start my day off with my sister, niece, and new little nephew here!  It was so nice to be able to see them, though the circumstances could’ve been better.  Isn’t that how it goes though? We go on, wishing we could make time, figure out how to work out a visit, etc. then something happens; a birth, a death, an illness, and we finally make it happen.  With gas prices, kids, school, and life getting so busy, we hardly see each other.

My father went in the hospital on Friday, and finally came home last night. I’m glad going to the hospital isn’t on my “to do” list for today.  On Easter (Sunday), we had a nice morning with the boys.  I had all of the food prepared, started the ham, and jumped in the shower.  I got out about noon, got a phone call from the hospital that my dad wanted to see me. I asked the nurse to let him know I was showering then I would be over. My plan had been to finish the food, make him a plate, go visit, then come home and have dinner with the family.  Well, that apparently wasn’t going to work for him!  So about 10 minutes later, I got a call back from the nurse, apologizing all over herself that he had checked himself out!  WHAT?!  I was panicked.  So Richard took my car to go find him, and I stayed home, incase he got a cab.  Well Richard found him first.  Dad’s plan was to come home, get his car, and drive off to be alone, and die. He was in a horribly depressed state of mind and I knew that.  I wasn’t going to let his state of mind influence this decision.  So I told Richard to tell him that if he tried to drive I would call the police, because he was endangering other people at that point as well. 

Mind you, all this time he was having an active heart attack!  When I was in the hospital the day before, and he took out his oxygen, his levels dropped over 20 points!  I was afraid he would just keel over at any point! 

So my husband stayed with him and finally convinced him to admit himself again.  Except he had to go in through the ER ALL over again. Wait for a bed to open, all over again.  Complain about the wait, all over again. Well, you get the drift. All the while he is cursing me for taking him in, in the first place.  Swearing he’d never tell me again if he wasn’t feeling well.  It was ALL MY FAULT!

I didn’t see my husband until 11pm on Easter night.  The kids and I ate dinner, though they didn’t want to.  They wanted their daddy.  On Monday I went to the hospital with back up! My sister drove down to help me talk some sense into him.   Of course the first thing he says is “I could’ve been home for Easter if you hadn’t made me come in here!”  I’m surprised I had any tongue left with all the biting I was doing.  I have a lot of patience and tolerance for outbursts, I’ve had practice with my son, and I get that sometimes it isn’t easy to control.  All the same, there were times I was snapping at him, I was shocked by what he said, and I really wanted to walk away and not look back.  The hospital started him on a medication that helped to stabilize his mood, and it was like the clouds parted, the sun shined through, and there was peace.

We had a counselor meet with him.  That seemed to help a lot (Well that and the medication).  He finally agreed to have the procedure done. Then we got the insurance squared away and he was shipped off to the VA hospital.  We went that night to make sure he was okay and to warn the doctor and nurses about his “escape” on Sunday.  We encouraged them to keep him especially comfortable. Ultimately he was scared, frustrated, and having really bad anxiety, and he was raging about it. But he did well there, and we were able to head home, knowing he was okay.

So they did the angio and his heart looked okay.  They didn’t need to do any other procedures and got him set up on his heart medications, again.  We went and picked him up yesterday afternoon.  Today he is kind of tired and sad. 

I’m sitting here alone in the house, and it’s quiet.  I’m bummed my sister and her family can’t be here longer but I really enjoyed having them here.  It meant a lot to not feel so alone in all of this.  Words cannot describe how horrible he was acting so at least I know someone else saw it and saw how bad it got.  I’m tired, I’m relieved. 

This afternoon I have an appointment with my Rheumatologist to find out the results of my most recent blood tests.  So I’m hoping that goes well.  

Ultimately I’m really grateful for my kids, they were troopers through all of this.  They are so used to me being here and making sure everything works out.  I’m thankful for my husband for being super supportive and taking the time off of work to do all of the things I normally do.   I’m thankful that my sister came down to help me with all of this.  I’m thankful that my niece gave up her Spring Break to spend most of it sitting in a hospital or a car, and for all the laughter she helped us share!  And I’m thankful for my nephew, because well he made me smile with his immense cuteness!

I guess even with as crappy as everything was this week, there still is a silver lining.  I’m glad my dad is okay, I’m hoping this encourages him to get some help.  I realized that hundreds of miles doesn’t mean I’m not close to my sister and her kids.  There were so many good things in amongst the bad. Though I wouldn’t want to have to do this again, the outcome helps to cope with it.