The Moment I Became a Special Needs Mom

I don't think any mom anticipates having a special needs child, even when the risks are high.  We all want to beat the odds.  But realistically, there are children out there with special needs so chances are either you have one (or more than one) or know someone who does.  That is part of the reason why I am writing this post.

It's interesting to think about the fact that I became a special needs mom the second my youngest son was born; I just didn't know it yet.  He had some health issues after birth and spent 10 days in the NICU.  His first year of life was rough for everyone, as he rarely slept more than a few hours at a stretch and we could not figure out why.  He was seen by numerous specialists who ruled out some diagnoses and gave him others, none of which my husband and I agreed with.  We both knew something was going on, we just didn't know what it was.

As time passed, he met all of his milestones on time except one.  He didn't really have much to say.  At first, we thought it was because he has an older brother who likes to speak for him.  He had 2 sets of ear tubes and his adenoids removed, which we thought would help his speech.  Fluid in the ears would make everything sound funny and could delay speech. But as he got older and was still not talking very much, we had him evaluated.  His speech was delayed, along with a few other skills, but his speech was our biggest concern.  He started speech therapy at 2 1/2 years old.  But I did not see myself as a special needs mom.

Later on, he aged out of his first speech program and we had him evaluated for another.  He qualified for that and also began receiving private speech therapy at home.  We noticed that he did not eat much and would often refuse lunch at daycare and dinner at home.  He would eat certain foods, but they were limited.  Feeling like he was just going through a phase, we still served him what everyone was having for dinner whether he ate it or not.  But he wasn't gaining weight.  From January 2014 to December 2014, he didn't gain any weight at all.  Our pediatrician tested him for food allergies, of which he had none.  The next step was evaluation for physical therapy and occupational therapy to rule out (or include) any physical or sensory issues.  But I did not see myself as a special needs mom.

He ended up qualifying for both services.  Now we were up to 4 types of therapy: private speech, speech through the public school district, physical therapy (PT), and occupational therapy (OT).  This totaled 9 appointments a week.  I was so tired from making sure he got to all appointments, frantically trying to schedule all of his appointments every week so that there was no overlap, that I didn't even have time to see myself as a special needs mom.

After about a month of OT, we realized the only therapy he was really getting was fine/gross motor skills, which include things like putting beads on a thread, picking up small items, etc.  We did not think this was what he needed.  We really felt like he had some sensory issues and after I talked to my aunt, who is an OT in another state, everyone agreed we needed a second opinion.  So I started researching OT clinics that have equipment in the facility to do sensory OT therapy.  The OT he was getting was in our home, so all of that equipment was really not available to him.  I found a place and we were able to get him in for another OT evaluation.  But I still did not see myself as a special needs mom.

After his second evaluation, it was clear from talking to the new OT that he has some sensory issues.  I asked her if we were justified in thinking that he needed the sensory therapy (versus the motor skills) and she replied, "Yes."  That, my friends, is the moment I became a special needs mom.  

It was that moment because I finally had confirmation of what was going on with my son.  I had known for some time that there was something a little off for him.  I could tell that his "picky" eating was different from the phase my older son went through.  I could tell that his meltdowns were different than his older brother's.  And now, I had someone who could tell me why.  I also realized in that moment, that this was something we were going to deal with for the rest of his life.  Eventually his speech with catch up and he will probably no longer need speech therapy.  He has already been discharged from PT, and even though he has flat feet, it's not bad enough to keep him from being active.  So there is really nothing else for us to do in that area.

But this, the sensory issues, will be with him forever.  He will always have aversions to some things.  With therapy he should be able to manage them, but he's going to sense things in a way that is different from me.  I cannot ever understand that, but as a special needs mom, I have to help him understand it for himself.  It is now my job to help be the best he can be, while trying to enter his world, which is one I can never fully know.

I want all of you NTPM's out there to know a couple of things that I have learned from this experience so far.  First, if you feel like something is going on with one of your kiddos, whether it's behavioral, medical, or something else, DO NOT GIVE UP.  I can't tell you how many doctor's and specialists we've seen who probably thought I was nuts because I kept insisting something was wrong and I knew it wasn't a dairy allergy or acid reflux.  Keep pushing until you find someone who will listen and believe you.  You will find them, it just might take some time.  Because once you do, everything changes.  As soon as the OT told us her findings, it explained everything that had been going on in my son's life.  It all made sense.  And if you keep pushing, you will find that, too.

Second, if you have a special needs child, DO NOT BLAME YOURSELF.  I know some of the mom's I met in the NICU blamed themselves for their child being there.  Some of you may feel that way.  You get a case of the woulda, coulda, shoulda's.  Don't.  It is NOT your fault.  Your child was given to you because you are the only one who can fight for them, take care of them, and be their advocate.  I never blamed myself and I really can't explain why, but I think it's because I knew I did everything I could to take care of him before he was born and I was prepared to do whatever if took after he born.  It didn't matter what happened, he's my son.

Lastly, if you do not have a special needs child but know someone who does, HELP HER.  Be there to listen if she's frustrated and needs to vent because no one else is listening.  Ask her if there is anything you can do, even if it's just go for a cup of coffee or cook dinner for her family.  Offer to drive to appointments one day or take her to get her nails done.  Never judge her for her children or their behavior.  Let her know you are there for her, you love her and her kids.  Similarly, if you have a special needs kid and you know someone else who has a special needs kid, support each other, too.  Don't be afraid to ask for help and don't be afraid to take it when it's offered.

Every mom thinks she has the perfect child and every mom is right.  And you know what? It's OK.

A Homemade Christmas

I love Christmastime.  Especially the lights; the warm glow makes everything seem so surreal and beautiful.  But the last few years, it has been difficult for me to find my Christmas spirit.  Mostly because I haven't been able to do a lot of the things that mean Christmas to me: making cookies, decorating the house, wrapping presents, visiting family, sending out cards.  Our family has struggled financially the last few years and part of it was our choosing (i.e. moving to Texas for me to pursue a PhD meant giving up a semi-steady income for an uncertain future).  It's a hard pill to swallow when the holidays are hard because of our decisions.

But this year was different.  I don't know when I got the idea to make homemade gifts this year, but it came to me at some point.  I thought it would save money and still allow my children and husband to have presents to open.  So I turned to Pinterest and started saving anything I thought I could turn into a present: egg cartons, aluminum cans, coffee creamer bottles, etc.  I asked my crafty family members and friends if they had fabric scraps I could have.  In the end, I did have to buy a few things, but I spent about $30 in total.

Here's what I ended up with (links included for ideas or inspiration that I got from Pinterest):

Coffee creamer bottle snowmen: I filled these with cotton balls.  I figured the boys could either empty them out and fill them back up, or we could glue the cotton balls to paper and make snowmen.  For my youngest, this was the toy that won the day, over EVERYTHING else.

Rocket packs: 4 soda bottles, wrapped in duct tape.  The felt scraps for the flames were given to me (thanks, Mom!).  I had the black ribbon for the straps and the red and yellow ribbon I added so the boys would know which was which.  For the rocket boosters (in black), I used a plastic cup that I cut down and hot glued black felt on.
Link: http://www.doodlecraftblog.com/2012/04/super-sci-fi-rocket-fueled-jet-pack.html

Egg carton bead sorters: OK, this was not well thought out.  Within a few minutes, the beads were everywhere.  BUT, this will give us beads to use on crafts in the future, so I think it can be a win-win.

Entire back heat pack: This was an old t-shirt of my husband's that I used to make a heat pack he can use that covers his entire back.  It's filled with rice (10 pounds to be exact, which in retrospect may have been a bit much....).
Link: http://www.purposefulwandering.com/2012/01/up-cycling-hubbys-old-t-shirt.html

Angry Bird bowling:  My boys got stuffed Angry Birds in their stockings last year.  When I saw this, I knew I had to do it.  It cost me a couple of dollars in paint and I used a black Sharpie that I already had instead of buying black paint.  6 cans for each of my boys.

Link: http://homemadebeautiesbyheidi.blogspot.com/2011/10/day-2-of-bird-day-week-angry-birds-can.html#!/2011/10/day-2-of-bird-day-week-angry-birds-can.html

Now, we did have some other gifts for the boys.  We tend to shop throughout the year when we find things on sale.  For example, we got remote control cars that were normally $50 each for $10 each WITHOUT going out on Black Friday.  We refuse to shop on Thanksgiving or Black Friday, but that's a post for another time.

Anyway, I did not get to make everything I wanted to due to time.  But I never felt stressed about not getting to it all.  I found that I thoroughly enjoyed the process of planning and making the gifts I did get to.  And you know what else? I FOUND MY MISSING CHRISTMAS SPIRIT.  I found myself getting lost in the process, not thinking about anything but the project I was working on.  And now I have so many ideas, I have a plan for gifts for Easter, birthdays. and next Christmas.  

And this, made it all worth it:

Dear Mom I Wanted to Be,

Dear Mom I Wanted to Be,

Wow, we are very different people, aren't we?  When I found out I was pregnant for the first time, I didn't know that I was suddenly torn into two separate people: the Mom That I Am and the Mom I Wanted to Be.  There was a lot I didn't know that pushed us very far away from each other.

I didn't know that my birth plan was going to go straight out the window.  I didn't know that I was going to struggle to breastfeed for every minute I did.  I didn't know how guilty I was going to feel when I made the choice to stop.  I didn't know that I was going to have two boys only 18 months apart.  I didn't know that the second pregnancy was going to be more scary than the first.  I didn't know my second son was going to spend time in the NICU.  I didn't know about all of the challenges that were about to enter my life.

But I also didn't know how much love I could carry.  I didn't know that my family was going to get so strong through all of those challenges.  I didn't know that having two boys only 18 months apart would make them so close.  I didn't know how strong I was until I had to start fighting.

You see, Mom I Wanted to Be, you are purely a figment of my imagination.  I wanted to be you: the perfect mom.  But that wasn't even close to possible, was it?  I wanted to be the mom who was always well put together, who always had her kids in clothes that matched, who always had fun activities planned, who always kept her cool no matter what her kids did, and who was always happy about being a mom.  I'm none of those things.  (But let's be honest, I wasn't all that put together BEFORE I had kids, so hoping I could magically transform into June Cleaver after they were born was a bit of a stretch.)  I had so many grand plans and hopes, all of them pinned on you.

When I failed to be you, and I saw myself drifting further and further away from you, I started to get discouraged.  I tried so hard to be you that I forgot that I needed to be me: Mom That I Am.  I don't really want to be you anymore, even though I see you in other mama's.  When I see someone post on Facebook about all of the fun activities they do every day, I reach for you.  When I hear someone talk about how well behaved their children are, I look for you.  When I see pictures of a family where everyone is smiling and perfectly matched, I wish I was you.  But I still don't want to be you.

If I were you, my boys wouldn't know how to choose their own clothes because I would do it for them.  If I were you, my boys wouldn't know that I have feelings just like they do because I would be happy all the time.  If I were you, my boys wouldn't know how to apologize because they would never do anything wrong (and I might add, they would never hear it from me).  If I were you, every minute of their little lives would be planned and my boys wouldn't know what it was like to just hop in the car and go for a random day out.  If I were you, I would probably not be as happy as I am.

Sure it's hard.  It is for every mama.  But by keeping you in my mind, Mom I Wanted to Be, I am never going to be able to truly be the Mom That I Am.  So, I guess this is goodbye.  I don't really need you anymore.  I'm sure you'll try to stop by from time to time, but as of right now, you are no longer welcome.  Don't take it personally, Mom I Wanted to Be.  You served your purpose and it's time for me to move on.

Thanks for everything,
Mom That I Am

The Importance of Manners

Last night my husband and I actually got to go on a date and spend some time with adult friends.  It was SO nice.  We were talking to a couple who recently got married in September and the wife mentioned having spent all day writing thank you notes.  The more we talked, the more we all agreed that manners seem like they are becoming a thing of the past.  And I mentioned that by the time our boys were older, they would probably be the only ones who would write thank you's and say please and thank you.  My friend said, "Well, at least you know they'll have good manners."

Yes.  They will.  But not just because that's how I was raised.  It's also an important thing for them to learn.  In my opinion, it helps teach empathy.  Why should you say sorry when you hurt someone? Because you feel bad and you want them to know.  You don't like being hurt, so you shouldn't hurt others.  Why should you say please when asking for something?  Because you want to let people know what you need some help without demanding what you want.  Why should you say thank you?  To let someone know you appreciate what they did for you.  This all seems like common sense, but I know lots of kids don't do this.

Now before you think I'm blaming parents, I'm not.  Sometimes parents can do it all right but it doesn't seem to matter because of the culture we live in.  Think about TV shows, movies, magazines, commercials, the list goes on.  How often do you see people using manners?  Occasionally, I would say, but not nearly enough.  Go watch a classic movie or TV show and I bet you would see a lot more.  My point is that our society, our culture, is showing kids that manners are not important.  It's teaching boys that they don't need to hold open the door for their date and it's teaching girls not to expect it.  Well why the heck not?  My husband does all of that for me.  He opens doors and let's me go in first.  He won't eat until everyone at the table it served.  Once, in a restaurant, he took our oldest son (who was still a baby at that point) so that I could eat with both hands.  He actually had another customer come up to him, an elderly gentleman, who complimented him for doing that.

I am proud of the fact that my boys know to say please, thank you, and sorry.  I write thank you notes for them because they can't write yet, but they tell me what to say and they sign it.  Eventually they will be able to do it on their own.  They say excuse me when they bump into someone.  But it's not just because we've taught them, it's because we've SHOWN them.  Kids see what you do, more than we want to admit.  If you want your kiddos to be more polite, show them how.

Our kids should know how to use manners and expect to be treated respectfully by others.  I worry for future generations because manners are important.  I don't think any of us want to live in a world full of rude, inconsiderate people but to a certain extent, we already do.  Let's change that, shall we?

Humble Pie and Failure

Ever have those days where you feel like a complete failure at life?  Those days when you feel so completely crushed by the weight of everything that is going on that you see no way out?  That it's hard to see the promise of the future because you cannot get past your current situation?  Yeah, those.  I've been having a lot of those lately.

It's very difficult when you feel pressure from every aspect of your life.  Financial, emotional, challenges with parenthood, challenges at work/school, taking care of yourself, taking care of everyone else, keeping up with chores, keeping every one fed (this can be financial and emotional), the list goes on and on.  That is a very heavy burden that all mama's bear at some point in life.  Some of us handle it better than others.  I like to think I do pretty well, but tonight I reached my limit.

While I am not ready to go into details about all of it yet (I will at some point, once I get past it), suffice it to say that I felt the pressure and it got the better of me.  And while I was trying to hold it together, I went to lay down with my youngest son because he wasn't sleeping.  As I laid there, my brain would not shut off and I could not hold my tears back any longer.  I was trying to hold it in and be quiet because I didn't want my son to know I was upset.  But you know what?  He noticed anyway.  He looked at me and started rubbing my arm, like I do to him when he's upset.

It was humbling to see my 3 year old being able to empathize with me, understand my feelings, and be able to respond to them.  It made me feel like I was doing something right.  While some mama's might not be comfortable being comforted by their child, I let him.  Not only did it make me feel better, it made me realize that my biggest job, the only thing that I should be worried about, is being a mama.

I don't have any advice on how to deal with life's pressures and stresses. All I can suggest is cry when you need to, love when you need to, and don't be afraid to let your kids see that.  They feel it too, and need to see how you handle it.  It's OK to cry, it's OK to feel like a failure; I think everyone does.  And if you haven't reached that moment yet, you will.  It's OK to crumble once in awhile.  I think as mama's, we think we have to be perfect and should feel bad when we can't measure up.  But who are we measuring ourselves against?  Other mama's who are doing the same thing.  So here's a suggestion.  Why don't we all just stop comparing ourselves to others?  Everyone has someone they think is a better mama, but that mama has someone she feels inferior to as well.  If everyone feels inferior, no one is going to be at their best.  Just love your kids and love yourself.

And you know what? It's going to be OK, even if you can't see it right now.

Back to School!

Many of you mommy's may have kiddos headed back to school or going for the first time.  My boys are not old enough yet, but I know I will probably be a mess when the day comes.  Seeing all of the pictures and posts on my Facebook feed about kiddos getting ready for their first day of school, and I can't help but remember how I felt when it was time to hit the books again.

I LOVED going to school.  And it all started with buying new school supplies.  I thoroughly enjoyed picking out new folders and notebooks, a backpack and a lunchbox.  Everything fresh, everything new, everything so full of possibilities.  This didn't stop once I graduated high school.  I still loved preparing for classes when I started and the bonus was that I got to do it twice a year instead of once.  I really think this is part of why I continued in my education and am now working toward my PhD.  And I am really looking forward to buying supplies for my oldest son when he starts kindergarten next year. Yes, I'm a dork, I know.

But I also wanted to take this opportunity to remind parents to keep communicating with your kiddos once your schedule fills up.  It can be easier to talk and spend time together in the summer when everything is relaxed.  And it can be easy to forget to ask your children, "How was your day?" and actually listen to the response once school (and extracurricular activities) begin.

This is important not just to keep a strong bond with your kids.  Bullying is an issue that parents need to be aware of.  I know that there are some people who do not think bullying is a problem.  They say things like, "I was bullied and I turned out just fine," or "Kids are just too sensitive these days."  While these things may be true, bullying today has taken forms that a lot of people probably never imagined.  Kids have access to computers, the internet, and smart phones, all of which were not around when I was little.  And it's a lot easier to say mean things when you're hiding behind a computer and an ambiguous screen name.

I have included some links below for people who are curious or if you suspect your child might be bullied or might be a bully.  Both sides of the coin are an issue and should be dealt with.  I am not going to tell you how to deal with it because everyone knows their own child best and should deal with it the way you see fit.  Just make sure if your kiddo starts trying not to go to school (says they are sick all the time, just don't want to go, get very upset when they are left at school) and other issues have been ruled out, it may benefit you to ask them if they are being bullied.  I learned the hard way to listen to my boys; I hope you don't have to.

 http://www.pacer.org/bullying/

http://www.stopbullying.gov/prevention/at-school/

http://www.violencepreventionworks.org/public/bullying.page

Everything in Moderation

Usually a post about moderation involves food or drink of some kind, doesn't it?  Well, this one's not.  I learned a valuable lesson about technology in moderation last week and it's probably not what you think.

My husband and I really do try to keep technology to a minimum, but we don't always succeed.  The one thing we have been pretty consistent about is computer/video games.  We do not have a gaming system and the computer is off unless it's an emergency (see my previous post).  However, last weekend my oldest son, who is 4, asked me if he could play on the computer.  Usually I say no and direct him to something else, but he had been very good so I said yes.  I went to pbskids.org because they have really good games.  Once he picked a game, I thought I was going to have to sit with him and show him how to use the mouse, keyboard, etc.  To my surprise, he pretty much took over.  I only had to help him a few times because he is still trying to coordinate his fingers and sometimes he would right click by accident.

Here's where my realization came.  As I watched, it became clear to me that this is something I need to let him do more.  Yes, I said it, MORE.  Why?  Because it is actually going to be more detrimental to him (and later on, my younger son) if they don't know how to use a computer.  Think about it.  Computers are everywhere: schools, banks, even restaurants and gas stations.  They NEED to know how it works.  Being technologically literature is a must in our society.  But we still need to be careful because too much will be just as detrimental as none.  

So how do we strike this balance as parents?  I don't know.  If I had the answer, I would retire to the Bahamas right now.  The only thing I can do is share with you what we have decided is best as a family.

1. The computer is a privilege, not a right.  The boys' behavior determines whether or not they get to play. 
2. Mom and Dad decide what games and websites are appropriate. PERIOD.
3. We do not play every night.  Once or twice a week is all they get.  Once they are old enough for homework, of course this will need to be revised.
4. They will NOT get a computer, TV, or anything else like that in their bedrooms unless they have a job and buy it themselves.  If they are responsible enough to save and work for it, they can have it, but #1 and #2 still apply.  Same applies to having a cell phone.

Some of you may have whiz kids who enjoy computers and such and you let them have more time.  That's OK.  Some of you may have kids that have no interest and you have to force them on the computer to do the research for a homework assignment.  That's OK, too.  Whatever you decide is best is OK, just make sure everyone in the family knows the rules and expectations.