Monthly Archives: February 2014

Never ending journey

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It wasn’t what I expected. For some reason when I was little I thought all I have to do is survive until I am 18. Then life would be perfect. I would be all grown-up. I would answer only to myself. I would be respected. I would be content. I would stop searching. I would know that this is where and when I was supposed to be.


As a little girl I knew just how my life would be. I would graduate high school and viola be a grown up. I would have a great job (without any training mind you). I would have a home, a husband who doted on me and children who were well-behaved, respectful and put me on the throne I deserved to be placed upon.

I had no idea that the throne would end up needing to be cleaned so often. With bleach. But I am getting ahead of the story.

I turned 18 but had a few more months of high school. No moving out for me. I did not apply to college, who knew there were deadlines? Instead I ended up at a community college for about two months. I met a boy.

Boys. I tell you it all goes wrong with boys. I thought for sure this was my prince. And he was for a few years. One would think that moving in with a boy made you all grown up. But it doesn’t. 

The boy disappointed. I am sure the girl disappointed him as well. We failed one another and we moved on. I was sucking at this grown up thing.  The silver lining years later was knowing that while we failed we did not mess up one another. We didn’t make the mistake of getting married and having children with a partner who really never could be the partner we needed.

A few years go by. I get my act together with a real job and a semi-real apartment. (Man I miss that apartment). I met a man. A good man. A man with a house. A man with a job and savings and a budget. He was (I thought) grown up. We dated. We got a dog. We moved in together. I learned he wasn’t quite grown up, but neither was I.

We got married. Had a child. Built our dream home. Continued working at a job I enjoy. I went back to college and although that did not change my career. We had another child. The first child dog went to doggy heaven. A few years went by and we got another dog. 

Life continues. 

I hit the big 4-0 more than a few years ago. Certainly now I am a grown up, right? Except I am still not. I worry if people like me. If I am accepted. I still am looking for that magic wand that makes life a fairy tale. I worry that I am failing this life. That I am failing that man and the child and the dog. Yes, I worry that I am failing the freaking dog. I need reinforcement from friends and family that I am doing a good job. I worry that I am not career-orientated enough, that I will never succeed or move “up the ladder”. I lose sleep over knowing I am not the parent I am supposed to be. I try to give my best and wonder if I will ever be good enough. At anything.

The most unexpected part of being a grownup is that I never feel I am one.
 

Finish the Sentence Friday

Will my child cause your favorite teacher to be laid off?

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Last week there was an article in our local paper titled, “Special Education costs blamed for (school) layoffs“. Lucky for Boo this is not her school we are talking about. However it struck a chord. Why must we pit one against another?

Our town is small. We do not have many businesses therefore the tax burden rests on the property owners. Frequently we see battles pitting the school department against the municipal side of the budget. This is the first time, to my recollection that we are putting students (and their needs) against one another.

I am extraordinarily grateful that this article was not about our town. Yet I live with a fear that it will be soon and we should explore ways to avoid it at all costs.  


Probably because this is the first time I have had a child in the “special education” cohort of the school system.

Which is not quite true. My older daughter goes three mornings a week for extra help in math. She has gone to summer school for math assistance. This is the only subject she struggles in and the school (and tax payers) have supported her needs. I am sure it is for the care they show all students and also to increase the MCAS standing of the school. A quid pro quo, if you will.

Boo on the other hand is a different situation. Boo brings tremendous value to her classroom. Her classmates will grow to be more empathetic, understanding of another’s needs and more accepting of their peers. Inclusion means that while Boo is exposed to peers for advancement while she advances their sense of community. 

But she is a drain on the school system. Boo receives physical, occupational and speech therapy from the school system (which in my opinion should be the responsibility of our insurance company to pay). She has a dedicated 1:1 therapist that is with her during the school day. This is for Boo’s safety (she wanders) and to make sure she can participate in class activities. That is, after all, the purpose of inclusion: to have Boo participate. Without the aide she simply cannot. 

Due to the layoffs, that other school system has modified some 1:1 care. Now a therapist will have 2 (or more) children under their responsibility. Let me explain why that is an impossible task to give that staff member. Logistically it is difficult. If you take your two children to the playground you know they will not leave. If a therapist takes Boo and her other charge, she cannot have Boo on the slide and the other child on the swing. How can she make sure both are safe? What if one has to use the bathroom? 

Education-wise it is still ill-advised. The therapist sits at a table with Boo and reviews counting. If she has another charge, how can the children and the therapist concentrate and make sure the program is run correctly and with consistency? Just as a teacher with 30 students in a class cannot make sure every child understands the Vietnam War, a special needs therapist cannot split their attention equally with more than one child and be confident they are getting the most out of the child. Having another child is a distraction for all.

But who should pay? That is really the question and you are probably not going to like my answer.

I believe the parent should pay for some of the care and education. It is our child and our responsibility. However we cannot. We simply do not have the money to pay. Just as the town budget is stretched a parent of a special needs child is under a financial burden unlike no other.  Our medical bills are higher, we pay out of pocket for supplemental insurance and at age 5 we are still purchasing diapers, wipes and pull-ups. Due to the amount of physician and therapy appointments we also cannot work 40 hour work-weeks. A family with a special needs child budgets in ways you never imagined. It is constricting and inventive.

Here is where I will again anger many. I also think that the tax payers should not have to pay for music, sports, clubs or electives. English, foreign language, history, math, science? Yes. That is education. But electives, including music and art, should be the responsibility of the parent to pay. Those electives are also a drain on the school system. There are pensions, salaries and healthcare costs associated with those staff members just as the special education staff. 

There are a lot more students taking electives than using the special education department. 

I am not sure of the answer. I do believe that we should pay a portion of Boo’s care. I firmly believe that our insurance company should have to pay for her therapies that happen in school, including her ABA therapies. I think some sliding scale should be in place to take some portion of the expense off the community.

However, if I am going to pay privately for Boo’s public education than I believe I should also have to pay for my older daughter’s music instruction.  


The Mommy War with herself

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The other day Rachel from Tao of Poop had a wonderful post about how she wonders why she says she is JUST a stay-at-home mom. See, Rachel brings up a great point. What happened that made us think poorly of ourselves, and others, for being a stay-at-home mom.

Quite frankly I blame ourselves. We women are to blame for the mommy wars. And I am not talking about the war between the stay-at-home and working mom. But the war we have with ourselves.
The feminist revolution happened when I was too young for it to impact. When I had Abby you fell into one of two categories: the stay at home or the working. One of us definitely looked down on the other. But for different reasons, I think, at least for my generation.

There is this theory that the SAHM (crappy acronym by the way) is the lucky ones. We working moms think their houses are spotless, their kids are well behaved (and probably don’t watch TV) and they have real family meals every day. We also think you could drop by and use their bathroom and they won’t be running in to give it a quick scrub down first. Working moms, at least this one, views the SAHM as their superior, falling just behind those fools saints moms who home school. We feel they have the patience we could never attain.  

In truth, the stay at home and the working moms are equals. We are all fighting the same battles. We are trying to manage our house in this 24-hour world. All of us at some point have hidden in the closet eating the last M&M. We are the CEO of the house, the Keeper of the House, the Chief Financial Officer of the House, the Cruise Director for every day off/vacation/snow day, the Executive Chef, Homework Tutor and Head Stylist/Fashion editor. 

Where a SAHM feels she has to apologize for being “just” a mom, I feel I have to apologize for working and not being there. I am not at the girls school parties. I am not chaperoning field trips.  I am not doing a project for science. My house is never company clean and some days (gasp) my kids wear their pants from the day before. I drop Boo off and feel that I am “just” working when I should be with my child. I rarely meet Abby’s bus in the afternoon and feel guilty that I only see her for two hours before bed. That those two hours are usually filled with screaming and crying over math homework doesn’t help the guilt.

The Mommy Wars suck. But the war we create in our own heads? The guilt we feel by whatever choice we made, that sucks more. 

We are not just moms. Not anyone of us. I am declaring a truce in the Mommy War. We are no longer thinking poorly of ourselves. We promise to end the judgement of how we are doing by the mom next door. We will embrace who we are, dust bunnies and all. I declare a new mantra:

I’m a mom, no qualification necessary.

Who’s with me?



Small

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This post is part of Lisa-Jo Baker’s Five Minute Fridays. Where you take 5 minutes and just write. No editing, no second guessing, no censoring. Ready, set, go…

SMALL

I sometimes feel so small as a mom. It doesn’t help that I am petite. But I feel small when I do not have the answers. When I wonder am I handling this discipline issue the right way. When I look at how my children love me and feel so small and unworthy of their praise.

I feel small when I think about all of Boo’s varying issues and science doesn’t have the answers. I feel small when it seems the next step is to high for me to reach.

I feel overwhelmed and so small and so inadequate as a parent on days when I cannot figure out the math homework. When I do not keep the house as neat as I should. When I am at work and the girls are on school vacation. When I make cheese, crackers and fruit dinner because I just cannot face cooking one more meal.

But then I look at my girls sleeping and my heart instead of being to small grows 10 times too big as it explodes with love for these two little girls who have changed my life in ways I never imagined.

I grow larger than my height when I realize how these two little girls have changed me. How I am more vocal, more confident, more than I ever dreamed motherhood would be.

I no longer feel small.

STOP

  Five Minute Friday

It’s okay she is turning colors…

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Add another diagnosis to Boo’s repertoire. Okay, not another one but “color changes” has officially been updated to Raynaud’s Disease. With this polar vortex happening, her color changes have become more pronounced and she is for the first time telling me, “hands hurt”.

Which is good.


Because, first, she is aware of the pain. Second, she is telling us and third…okay no third upside. Before seeing the doctor we asked Boo’s teachers and therapists to have her skip recess. I know that seems unfair, because the girl likes her slide. However being the mean mom that I am I thought frostbite trumps love of slides.

We finally got an appointment to see her rheumatologist this week. We left at 6:30 in the morning for a 9:30 appointment and made it on time (yeah me!).  This is typical for an early morning appointment. There have been days when we are an hour early and others when, well…when you wait three months for an appointment you better be an early bird and not the late worm.

Into the appointment walks Boo’s previous rheumatologist, the one that left us for Singapore was back. I did a happy dance. Seriously a happy dance. She told us that Boo Reynaurd’s. She further explained that typically they don’t diagnose it this young but obviously she has had it since birth. I honestly breathed a sigh of relief, we were not imagining it. Then the other shoe drops as she told me: However, due to her very low blood pressure we cannot treat her as we typically would medicate. The risk of bottoming out her pressure is not acceptable to the benefit of providing her relief.

Um, low blood pressure? We were just seen by cardiology. Remember, we don’t have to go back for five years! They never mentioned anything about a blood pressure issue. We immediately place a call into cardiology and in typical fashion hear back two days later. 

It seems Boo has always had significantly low blood pressure. We were not told as it does not seem to impact her. Because she isn’t complaining that she is dizzy (would she know how to?) or passing out (obvious clue thank goodness) there is no reason at this time to worry about it.

But if she passes out be sure to call them ASAP. Dude, I’m not calling you I’m calling 911 if that starts to happen. Of course we are not going to medicate the Raynaurd’s if giving her medication will potentially bottom out her blood pressure and kill her. We will keep her warm and try to limit her exposure to the polar vortex.

I am struggling with the faith that some day, some freaking day, instead of being told: well, it isn’t normal but it doesn’t seem to bother her (or my new favorite: just keep doing what you are doing because it is working) a physician is going to say to me:
  

This is what Boo has and this is how we are going to treat it.







Don’t hide

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It used to make my heart stop. When I would see other children Boo’s age and think WHY CAN’T SHE JUST (insert whatever they did). I still get smacked in the head now and then to be honest. 


But I don’t want to NOT hear about your child’s accomplishments. I want to celebrate them with you.

Just like I want you to celebrate with me. When Boo jumps for the first time. When she says a sentence. When she moves all the furniture into one room. Her milestones are different than your child. But that doesn’t minimize what your little one accomplished.

Please do not think you are hurting me by bragging. Heck that is the right of every parent. Even Boo’s. And hell I brag more than anyone. I am excited when I see your child build blocks, sit up unassisted or walk for the first time. The fact that your child did it on schedule and mine took her time?

Yes, it hurts. But in a good way. Because every time you post a milestone I am reminded of Boo’s first whatever. Sadly, Abby’s not so much. Only because Abby hit her stride and never stopped. We didn’t have to work for them. It doesn’t make her milestones less or Boo’s more.

I like your child’s milestones. I’m glad you don’t have to go through what we do to have our child walk, talk, jump or eat. So please don’t stop sharing. And definitely don’t stop celebrating. Just rejoice in how awesome your child is.

I know I do.

I’m guilty

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I admit it, I’m guilty of sucking at Valentine’s Day. I am guilty of forgetting to get David a card until minutes before the deadline. I refuse to get the children gifts. David, I went all 1980’s and made a mix-tape, well CD, for him of his favorite 1980’s music. Jen would be proud. But like all of my mix-tapes it was probably the wrong theme of the week!


Before  we were married I went all out for V-day. We would go away for the weekend especially if it fell, like this year, on a 3-day weekend. A huge gift, a sappy card and something from Victoria’s. Those days are long gone my friends.

Now it is just another day for me. Which makes me sad in some ways. But more angry in others. Why do the marketing geniuses have to make me guilty for Valentine’s Day? Isn’t it enough that I tell my husband and children that I tell them I love them every day. Multiple times during the day:

  • When they wake up
  • When I or they leave
  • When I talk to them on the phone
  • When I or they come home
  • When I am about to scream loud enough to cause a sonic boom over homework but still say I love you but DO YOUR FREAKING HOMEWORK


I counted and yesterday I told every member of the family I loved them a total of 173 times. That number may or may not be made up. But wait there is more! I also show them I love them every day:

  • When I feed them
  • When I shower them (the girls not David)
  • When I provide clean clothes
  • When I do not murder them for not starting the laundry (the David not the girls)
  • When I give them the last brownie–homemade mind you
  • When I do not throw away all their toys when I step on a Barbie shoe in my bare feet
  • When I put down the wonderful book I am reading (Fault in Our Stars) to play a game with them
  • When I do not let them win at Connect Four

Combined I spend every minute of the day (awake, asleep and somewhat comatose) loving my family.  Why on earth do I have to spend $6 proving it with a card? 

So I plead guilty. I am guilty of not falling into the trap of Merchandiser’s Valentine’s Day.

Finish the Sentence Friday

I’m old

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A warning to anyone under 30-ish and/or childless, this post probably isn’t for you. It contains a lot of truth but will probably make you either jealous or want to punch me in the throat for crushing your dreams. But here are some truisms that you just don’t get until you are on the dark side of 30 with children. Or (insert gasp) older with children.


1. Staying up past 10pm is an accomplishment not a right.
2. When your child comes home and tells you some one was mean to them you remember when you were not so nice and wish you could do a Back to the Future and kick your own ass. See, if you are 30-ish you have no idea what that means.
3. You will give the last Oreo to your child, but not your spouse.
4. At some point you will stop thinking you can lose those last five pounds and instead look at that C-section scar as a badge of courage.
5. Although you want to smack the childless co-worker who says she is “so tired” and “didn’t sleep” all night you won’t. But only because you are too tired to lift your arms.
6. Sometimes you wish life was a Jimmy Buffett song and could just change your Latitude.
7. While you will always love your children you do not always like them.
8. You don’t care if you just insulted childless couples by saying you sometimes don’t really like your children.
9. Although you love your parents, you will wish they remembered what it was like to have children NOT grandchildren when they go shopping.
10. You wouldn’t change one minute, one moment of heartache, one tear in exchange for the hug that just won’t stop. Even when your child is on the dark side of 30.


Got my motivation….

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The DJ Jen needs some songs to get motivated. It is hard enough to motivate myself yet I am there for a friend in need. But motivated for what? That is where I struggled. Then I listened to some really bad radio.

So Jen, here are the five songs guaranteed to motivate me to change the station!

What does the Fox say? Even my 10 year old hates this song. Luckily for me she knows the first few chords (are they chords?) and will alert me to change the station now? One day in the car I didn’t change fast enough and when it said What does the Fox say? Abby replied: Look out….it’s hunting season.

https://youtube.googleapis.com/v/jofNR_WkoCE&source=uds


I have no idea why this next song bugs me so bad. But in the 80’s until today at noon when it came on again it just makes my stomach clench.

https://youtube.googleapis.com/v/aI9lo5BRJmg&source=uds



This should be a rule. If you are going to remake a song, make sure you can kill it. In the good way. Like Jimmy Buffet did with Scarlet Begonias or Southern Cross. Do not try to recreate perfection, fail and then put it on my radio.

https://youtube.googleapis.com/v/NxoRHqc1iDk&source=uds


I love Christmas music. I truly love it and would listen to it all year round if that wouldn’t make me a candidate for intervention. But some songs just don’t make sense. First I don’t even know what figgy pudding is. Second if you are going to demand it before you leave trust me something will be stuck up your nose. It might not be figgy pudding. Seriously think of the lyrics…it is the Christmas Stalking Song as Dr. Doofenshmirtz rightly proclaims.

https://youtube.googleapis.com/v/MMgtRh2t0RA&source=uds




And last but not least the song that has Abby & I screaming Change the Station NOW!!! If anyone tries to blur the lines with my daughter? Well, boyfriend hunting season should be year round!

https://youtube.googleapis.com/v/yyDUC1LUXSU&source=uds


This has been a motivation mix-tape for the wonderful Jen Kehl. Be sure to visit the other DJ’s and get motivated!

Got humor?

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How to survive life as a parent with special needs. Okay that is a lofty goal! It is hard enough navigating parenting with a child who is typical. Add in a few diagnoses and life can get overwhelming. But here is my go-to list for surviving the life I never expected.

1. Keep your sense of humor. If you have lost your sense of humor because it was drowned by vomit, poop, tantrums or tears Google comedian Steven Wright. How can you not chuckle at thinking: “Is it weird in here or is it just me?” (Steven Wright)

2. Make a daily goal. For me it used to be brushing my teeth at least once a day. Now it is making sure I get to work without evidence of Boo’s breakfast on my shoulder.

3. If you feel all alone in this life as a parent with special needs, you probably are. But it is your job to find support. To scream at the top of your lungs I NEED HELP. If no one hears you, let me know and I will add my voice to yours.

4. Make your child’s teacher/therapist/doctor your friend. Find out about their lives. Interact with those who your child spends most of their time. It will enrich your life in ways you cannot imagine and make issue #3 far less likely to happen.

5. Have a glass of wine. Not the bottle a glass. 

6. Allow yourself to cry, laugh, grieve and rejoice all in the same minute. It doesn’t mean you’ve lost your mind but that you may have found it.

7. Find “ME” time. I know, I hardly ever do. But when I can run for just 30 minutes I come back a much nicer wife, mother and person. It doesn’t have to be every day (oh how I wish I could find me time every day) but make time for you.

8. You hopefully have a partner. The child’s mother or father. Guess what, they are your partner in this and they too are parents with special needs. So lean on them. Consult them. Do not do this all on your own and remember that partner is there. Make them take your child to therapy, a doctor’s appointment or do drop-off at school. For too long of a time I tried to be super mom, handling everything for Boo. Once I let David in our lives were much easier. If you don’t have a partner look at rule #3.

9. It’s okay to wear your sweat pants with a hole in the crotch for a few days in a row. Just try to remember to wear underwear so you are not arrested for pulling a Miley Cyrus at school drop-off.

10. Mix-up your friends. Try to anyway. Keep a healthy mix of parents with special needs and those with that normal kid who just talked back to them. It will make you appreciate your own little wonder. It will also help to make sure you feel alone.

11. It’s okay to get pissed off. Seriously pissy at this life you didn’t expect or prepare. And once you think you’ve got it handled someone will take the rug out from under you. Consider yourself warned. It is okay to question yourself, your God and your child’s doctor. It is not okay for any freaking one to tell you that you are not allowed to feel anger, grief or whatever emotion you may be going through.

12.  Your house doesn’t have to be Martha Stewart Spotless. I will say the state of our life is directly reflected in the mess state of the kitchen. But I have stopped saying to people, sorry for the mess. Instead I say, This is how it always looks and today is actually better.

13. Remember you are more than a parent. You are more than a parent of a child with special needs. You are you and may I say you are doing a fine job of navigating this life the best you can.

Lastly, and this is important: Five years into this life as a parent with special needs I will say this is our life. What we make of it. A glass of wine helps. But what really makes me survive?

The friends who have stood by to hold, comfort and more importantly laugh with me. So find some of those and keep them close. They will help you keep your sense of humor and your sense of self.