Sometimes I am Thankful I am a Working Mom

Most of the time I really long to be a stay at home mom. I always say that I could do so much more good if I was a stay at home mom.  It may sound weird but that is how I feel.  I could help out in school more, volunteer more of my time to organizations geared toward special needs.  It is truly my dream.  However, sometimes I am so thankful that I work.  Especially when we have one of "THOSE" nights.

My daughter woke up at 3:30 am this morning.  Thankfully my wonderful husband got up with her but she wouldn't go back to sleep and we were all up for the day at that point.  By 6 am she was tired and cranky (and so was my husband I might add...not that I was a saint).  I have to admit, knowing the kind of day that they were going to have...I was extremely happy to be a working mom.  I got to escape from the wrath of my daughter and threw my husband to the wolves (unintentionally of course).

It is so hard sometimes.  She gets something in her head and it keeps her up.  This time she didn't even know the exciting day we had planned for her (starting out at Air Trampoline Sports for their special needs jump hour, then going to lunch with my husband and his mom and then off to Allison's Gathering Place for her to sing her little heart out and top it off with Yoga with our favorite pre-school teacher from Winding River Yoga). She lost everything (except for lunch because...well...she has to eat right?) because she was so tired. 

I often wonder, what makes them tick?  What makes it that they are so set on what they want?  At 4 am there is no way in this life time she is going to get the ipad or go on the computer.  At 5 am I finally told her that she could read a book in her room but that was it....she didn't like that answer.  I really wanted to tell her all of the things that they were going to do that day and let her know that she lost them all but my husband talked me out of it.  He felt she would have reacted in a bad way and it just wasn't worth it.  He was probably right but sometimes I like to prove my point (which usually gets me in trouble).  My husband is much better with her when she is in  a mood like that.  He stays calmer then I do which typically keeps her calm.  

So when I know she is going to be a really cranky kid who could fly off the handle at any time...I have to admit...deep down...I am thankful that I am a working mom.  I guess god knows what is best for me and things all happen the way they are supposed to.

Until Next Time...

Jenn

Is Parenthood Everything You Expected it to Be?

Is Parenthood everything you expected it to be?  This question was posed to me by my husband last weekend.  My response...."No it's not."  He looked at me like I was crazy and said, "really?".

I never thought I would have a child with special needs.  I never thought that at 10 yrs old my child would be running to therapy appointments and socialization groups.  By 10 years old, I thought my child would be able to have sleep overs with friends.  So...no...parenthood is NOTHING like I expected it to be. 

Where in the "What to expect when you're expecting" books does it tell you that you may have a child with special needs.  Where does it tell you that you will have a revolving door for the first 3-5 years of their life of therapists/teachers  (Physical Therapy, Occupational Therapy, Speech Therapy, ABA teachers,  special play groups etc.) It doesn't....ANYWHERE.  No one prepares you for what we go through day to day.  

Where does it tell you that when you hear about a friend who is having their child evaluated that you will secretly hope that the child gets diagnosed just so you have another person who understands what you are going through? And when they are denied services you are almost sad.  It sounds horrible right?  But it is the gods honest truth.  This is what we, as parents who have special needs children think.  Not that we wish bad things on other families but when you find another family that you connect with who is going through exactly what you are going through, it makes life a little bit easier.

Years ago when I thought about what our lives would be like with a child was such a different view.  I dreamed of our perfect family.  Our daughter who had lots of friends.  Our home where everyone of the neighborhood kids would gather and hang out.  Our home where we would host New Year's Eve parties for her friends and they would all sleep over and act silly.  But instead it is the polar opposite.  I don't let her play with the neighborhood kids because most of them are mean to her (thankfully she doesn't realize).  We can't have kids sleep over because the slightest change in routine messes her up...add kids sleeping over on top of that and it is a recipe for disaster.  

I envy the parents who get to sleep in on the weekends because their child can take care of/entertain themselves.  I envy the parents who aren't still watching Barney or PBS kids with their 10 year old. I envy the parents who can leave their child with any babysitter and have a date night.

I am not saying that my life is bad...it is not by any means. I love my daughter to death but thinking back 11 years ago...I never expected Parenthood to be this way.

Until Next Time.

Jenn

Guilty Pleasures

I love my daughter with all of my heart.  I am thankful for the life we have but sometimes, I have to admit...sometimes, I wish my life were different.  Sometimes I wish I had a "typical" child who at age 10 doesn't want to be around me too much. I want her to be able to go to a sleepover at a friends house or family members house.  A child who I don't have to do most things for...heck...I child who can wipe their own butt.

I look forward to the times where we are able to afford to send her to Camp Pa Qua Tuck for the weekend (or the week during the summer) and give me a much needed break.  A day where I don't have to amuse anyone or run anyone around the island for therapies or events.  I love the fact that I can sit and not move off of the couch or not get dressed and have the peace and quiet on a Saturday when my husband is at work.  It is heaven!!!

And then...I feel guilty.  I feel guilty about the fact that  I look forward to sending my child away.  I feel guilty about wanting/needing the peace and quiet (after all, how many people would love to be in my shoes who can't have a baby)  What is so bad about running her all over the place to keep her happy?  I sometimes feel like a horrible mother.  Like I am pawning her off on someone else.

I know this is completely normal, which is why I wanted to write about it.  I think we all go through that and you know what...it is OK.  You are not wishing harm on your child...you are just wishing for some "me" time.  I think all parents...special needs or not...need that.

My mother taught me that guilt is a useless emotion and it is so true.  The bottom line is that we all need a break..we all need some time to our selves and regroup because that enables us to be great parents.  That enables us to be more focused and ready to take on the world of special needs.  That enables us to think straight and focus on what we need to do to help our child overcome obstacles ahead.

IT'S OK to need some time!!!  Don't waste time feeling guilty and not allowing your child to go to respite.  Enjoy those guilty pleasures so you can be the best mom (or dad) for your family.  Let's face it...if momma ain't happy...no one is happy!

Until Next Time...

Jenn

Just a few more days :(

Just a few more days until the end of the school year...How the heck did that happen?  Wasn't it just September yesterday?  This year, it is not only the end of the school year for us but the end of an era.  We are moving on to a new school and that scares the heck out of me.  New building, new teacher, new rules NEW NEW NEW.

For those of you who know me personally, know I do not adjust well to change.  I love the feeling of comfort when I walk into our current school.  The entire school knows me and my daughter.  They love her and it is a great feeling.  It is so scary being the little fish in a big pond...the Middle School Pond no less.

I don't even want to get into how much I am going to miss her teacher...she has been our world for the last 3 years...what am I going to do without her.  Granted she has become more to me then my daughter's teacher...she is truly someone I can call my friend and I know we will always keep in touch but she won't be in the same role in our lives anymore.

Parents of typical kids are lucky in a way...they switch teachers every year...there is 1 teacher and the next year there is another teacher.  In my world, there are 7 teachers at any given time who are with my daughter.  Most of these 7 have been with her for the last 3 years.  They know everything about her...we have our routines with each other.  I am going to miss them more then they will ever imagine.

I consider my daughters teacher, her second mother.  She is with her more then I am (not including sleeping hours of course).  I don't envy the teachers when this time comes....they have grown to be such a big part of these kids lives and then, just like that, the child moves on.  No one but a special needs parent will understand this emotional connection we have. Our teachers are so much more then teachers, they are therapists, they are cheerleaders, they are disciplinarians, and they are family!

I am dreading the last day of school and having to say goodbye.  The only solice is that I know it is not really "good bye" but "see you soon".  Though that doesn't make it suck any less.

Until Next Time...

Jen

Summer is one of my LEAST favorite seasons!!!

I have to tell you, I love the pool and the beach and the warm weather but all in all, I hate summertime.  When you have a child, summertime brings on so many issues, babysitting being the biggest.  Add a special needs child into the mix and it is a recipe for DISASTER!!

Special needs children need structure.  Take them out of routine and they are sometimes out of control.  Trying to find a place for my special needs child to go over the summer is nearly impossible.

Yes, she qualifies for extended school year but that is a 2 1/2 hour day...ok...what am I supposed to do with her the rest of the day while I am at work?  Most special needs camps are the same problem...half day. She is not able to go to "typical" camps without a shadow (and who can afford the camp, let alone the shadow).  What are we supposed to do?

I do have to admit, we keep my daughter on as much of a normal schedule as we can.  She doesn't go to bed any later during the summer then she does during the school year.  I have to keep as much structure as I am able to grasp hold of, as little as it may be.  But it is very hard.  How many times can you ask your friends and family to watch your child?

We qualify for 100 hours of respite...the problem is that you have to find your own respite worker.  Well if I had  someone who is willing to watch my child to begin with, this wouldn't be an issue right?

I get laughed at by family and friends.  I stress to much, it will all work out.  Yes, I know this is true because the bottom line is that it HAS to work out.  I HAVE to find someone to watch her even if it means going broke for the summer while doing it but an oh man do I hate this time of year.

Does anyone else feel the same way?

Until next time...

Jen

Being Blindsided Sucks

I love when my child is doing amazing.  When we have what seems to be a "growth spurt" in maturity, learning and basically on all sorts of levels.  It is that false sense of security sometimes.

You are going a long in life thinking how fast she is catching up and how maybe, just maybe, she will be able to move up in into a more advanced class and actually graduate with all of the other kids her age..AHHHH what a feeling...and then WHAM you get blind sided by reality.  I know I have written about this before but I feel like it is happening so much lately that I really needed to touch on it again.

So there I am eating dinner with my family and my nephew, who is 3 years younger then my daughter, is spelling sentences.  I just sat there and thought "wow, he has far surpassed my daughter".  
It is so hard to be happy for other parents when they are so proud of their kids when you know it is truly an amazing thing, when you feel so sad for child that you always thought you were going to have.

Times like these makes it like you are grieving over and over. It hurts..A LOT, but at the same time, you know it is wrong to not be happy for your nephew and his accomplishments.

It is that vicious cycle I have come to know and hate that goes along with being a special needs parent.  It is like a whirlwind of emotions... happy, sad, angry, loss..all at the same time.  Just when you have picked up the pieces and move on it blindsides you.  It seems that each time you get hit harder and harder.

I am usually such a positive person.  I know my daughter is not going to be another Einstein and I am ok with that.  My hope is that she will be able to live a relatively "normal" life.  I want her to be able to live on her own.  I know that the rest of her life I will have these ups and downs but I just wish they didn't hurt so much.

Until Next Time...

Jen

Do we sometimes jump to the wrong conclusion?

I was at a barbecue recently the kids were, for the most part,  playing so nicely. There was three children total all around the same age as my daughter. At one point the kids got out of the pool. I then heard one of the kids whisper to another child "Quick let's get back in before she comes in" and off they went to run into the pool without my daughter.  I said something to the kids and told them that they made me very sad and I was very disappointed that they were leaving out my daughter.  They didn't seem to care about what I had to say.

Shortly there after my daughter realized that they didn't want to play with her. A few minutes later she went up to them and said, "I'm really really sorry".  Now keep in mind my daughter did not do anything to be sorry about. I think she just hears  her teachers telling other children (and sometimes her)  things like "maybe if you say you're sorry your friends will want to play with you" and she took the initiative to try it and see if it worked.

It broke my heart to hear my daughter apologizing for something that she did not do wrong. My eyes started to fill up with tears and I had to walk away from the situation so no one would see my crying.  My heart was breaking for my daughter.  As it is, we steer away from playgrounds because kids don't like playing with her but now barbecue's too...how can I do that?  I always knew that eventually these particular kids (who she sees often) would realize the difference between them but I didn't think it would be so soon or so harsh.

A few minutes after I walked away, one of the kids parents happened to come by me (completely unrelated) and saw me crying. I explained what had happened and he brought to light an entirely different scenario that I had never thought of...  He explained to me that his son has a tendency to do that with other children.  He is kind of the ring leader who will take a group of three and make it two, leaving the third child out.  It has nothing to do with a disability with the third child...just typical "kids being kids" type of thing.  He did say that he was not happy about his son being this way I might add.

This dad really made me realize how sensitive I really am.  I always thought I was tough and could deal with just about any scenario but immediately I jumped to the "special needs" conclusion when in fact it was just a "annoying kid" thing. As dumb as this may sound..it made me feel so much better.

Thinking back...now I wonder how many times I really may have jumped to that conclusion and maybe it was the wrong one.  Maybe it is kids being kids in most cases.  I wonder how many of us do what I did..I bet more then want to admit it.  Maybe we bring more attention to the special needs aspect then is needed sometimes.

Is it bad that I am programmed this way?

Is it bad that I assume that other kids don't like her because of her disabilities?

Am I making her lose out on something because I am the insecure one?

I think I have a ton of thinking to do about this and maybe, just maybe, next time I will be a bit more open minded and not assume that everyone is out to hurt my daughter.

Until Next time...


Jenn