Category Archives: skewed view

No interest

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I have no interest in being a person who wallows. I do not want to be a blog that focuses on one theme. I think of this blog as my therapy. If I am lucky it is your therapy too because you realize you are not alone.

Whether your child is healthy and ornery like Abby or challenging like Boo or your house has a crazy puppy who is equal parts loving and destroying your house. I want all to feel welcome and to feel a connection.
Then there are days like today. The day that started out promising, too rainy to run. Waking up early to realize that the morning goes smoothly without incident. You knew it was too good to last.

It started innocently enough. With your daughter telling you that her pants had a whole in the, well, crotch yesterday. A boy on the bus noticed and it ended up into a discussion about who had an elephant trunk and who was flat.

Yeah. I went there. 

You tell the boys mom. Because you want to make sure that 1. she knows your child typically does not go into school with a hole in her crotch (unless she is Kristi) and 2. that you made sure there was no inappropriate show & tell on the bus that would get either kid suspended from elementary school. The other mom kind of reacted differently than you, had ‘the talk’ with her child. You felt bad because you saw and admitted to the inappropriate humor to the situation. The fact that Kristi saw the humor and said HEY RIGHT A BLOG POST ABOUT IT made you feel better.

You think that is the most you would have to deal with in a day. You think hey I handled this maturely. I answered my daughter’s questions in a way that she understood and didn’t feel embarrassed about. I promised not to tell her dad. Thank GOD he doesn’t read the blog since I never promised her I wouldn’t tell the world. 

Then the other shoe drops. Boo happens. She has a meltdown at school and at home. Abby tries to compensate by being the good girl. She tries to placate Boo but I stop her because I do not want to reward Boo’s behavior.

I realize that I am wallowing. I am stuck in this mantra that Boo is sucking the life out of us. That as awesome as she is, she is draining.  That I suck at this. That I cannot stop wondering where Spring is. When life will get easier.

When Boo will not demand so much energy (probably not going to happen). That I will not have to demand a doctor pay attention.

That I will not think life would be easier with the Abby issues.

I never intended to resent Boo. But sometimes I do.  Sometimes I suck at this whole “special” parenting thing.

Something else I never expected to do. I never had an interest in being a parent, let alone a parent of a child with challenges. Sometimes it is great. Sometimes it sucks. Most times it is not the life I intended.

But it is my life and I am doing the best I can, even when it seems I’m not.

Finish the Sentence Friday

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.

I am not a DIY-selfer

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Teachers are my heroes. They work for comparatively little salary for the amount of time, effort and dedication they show to their classes. They are hugged, kissed, loved and (in Boo’s case the other day) thrown up on by their students. They handle almost every situation with grace and some bleach.

However after four years of being involved in the education process I have come to a conclusion about teachers and homework.


It isn’t homework at all but revenge. Revenge, I tell you, for having to deal with our terrors little darlings all day. Like, Boo throwing up on them or Abby debating with her teacher that she really doesn’t have time for homework because she has riding lessons tonight.

After all, unless you home school (and then you are my hero) most of us send our children to school. Yes we say we need to work or it is for socialization or insert your excuse here.But the reality is that most of us I would be completely inept at educating my own children. Thankfully some brilliant mind invented the public school system. But then the teachers got smart. If we were going to send our delinquents into to their classroom they were going to send home “presents” to their parents.


Case point number one: the Every Day Math program. Whatever genius invented this “new” math for our children must have been really ticked off at either their students or their parents. There really isn’t any other valid understanding that you do this:

Instead of the way that has worked for my 40+ years:

But once you believe that the teacher’s appetite for revenge has been satisfied the next vestige of torture is delivered in the form of “special” projects. And by special I don’t mean a bracelet from Tiffany’s or an adaptive program for Boo. In previous years Abby did her special projects in class and we only had to go view them. But no, these 4th grade projects require the parent (aka MOM) to do some type of DIY project at home. Then this parent must help their spawn child to write a paper describing their process, their idea and whatever else is in the rubric.

My friend’s children had to make an earthquake house. I chuckled and asked don’t you know we live in New England? Unless your child was going to be an architect and you were preparing them for scholarship time this just seemed like a diorama gone mean. Then I got Abby’s notification and wished we had a diorama.

My child’s class must have really ticked off their 4thgrade teachers. We have to make a simple machine. Hello, I can barely put gas in my car! You want me Abby to make a machine?  With levers and inclined planes or a pulley (when I first read the types of tools you could use I thought airplane not incline). I don’t trust the kid with a knife and you want me to give her a screw and a lever and say, “make it so”?

My daughter who loves to craft is thinking bedazzle, balloon and magnets. Then she saw the paper and said an incline plane seemed cool (I think she read “air” plane too).  Abby did not appreciate my idea that SHE should invent a way to change Boo’s diaper so I don’t have to. Her ideas range from making a car, to using the balloon to deliver an object to I don’t honestly know what the heck she was trying to describe to me. 
All I know is that the teacher, whom we adore, won this round.

The Ultimate Soundtrack

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When making my mix-tape this week (on time!) I tried to stay current and then realized that the last 4 movies I have seen were from Disney. Oh, and Grease since that is Boo’s current obsession. Proving I am a product of my teen years my ultimate soundtrack would have to include:

http://youtube.googleapis.com/v/jVf4_WglzWA&source=uds


We should probably live by the line: Just once in his life a man has his time and that time is NOW and I am coming alive?

http://youtube.googleapis.com/v/4clhZZ6sdjk&source=uds


If you are going to have a soundtrack then you need John Cusack to pay your mix tape. In a boom box outside your window.

http://youtube.googleapis.com/v/oGawOk107eU&source=uds


I always felt bad for Ducky and after St. Elmo’s Fire I never really liked Andrew McCarthy anyway.

http://youtube.googleapis.com/v/PK2HANwsUWg&source=uds

 

I fell in love, LOVE, I tell you with Lou Diamond Phillips thanks to La Bamba and of course he played the best Young Gun…

http://youtube.googleapis.com/v/MfmYCM4CS8o&source=uds


Bon Jovi, Lou Diamond Phillips and a great song? What a way to end my teenage years. But uh to live like a teen in my mix tape, if only Cusack would be in my driveway. Cause I know, just know, if he went to my high school he totally would have crushed on me.

End of summer

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This is, by far, the easiest post I have ever written. Boo has struggled since her first year to overcome sensory issues. She doesn’t have a severe disorder that impacts our daily life. Jen Kehl can tell you more about that.

We are not alone in our navigating how to expose Boo to the sensory input she needs while balancing her innate fear. If you are a visitor in Our Land you will see a lot of other examples of having a child that is afraid of hair.

Boo doesn’t so much suffer from her sensory issues. It is more like she avoids them and it is easy to do so. For example, snow. We do not have a lot of it, well except when Nemo killed our February vacation. Grass? That was the best defense against Boo’s bolting. I really was kind of upset when she overcame that fear. 

Boo still has issues with a lot of sensory input. Be it noise, texture, smell or sand. Boo despises getting her hair brushed, as one example. She has a paralyzing reaction to sand. You can feel her heart racing, she whimpers low in her throat like a cornered animal. With a lot of therapy during and after school, Boo worked really hard to overcome her fear.

The difficult part of this is that Boo doesn’t realize she is afraid. She doesn’t have that comprehension. She only knows that she “no like”. But we live surrounded by the beach. This was one fear, unlike snow, that she had to overcome.

Selfishly the rest of the family really enjoys the beach. In truth, we kind of forced her to like it. The first few attempts were horrid. But we persevered. Every time we got to the beach she would whimper. We forced her out of the Jeep a couple of times over the summer. She would sit on my lap, but eventually (sometimes it took hours) she would stand on the sand. We kept it easy for her, always in her sneakers. Never forcing her to do more than she could.

And then, my friends, Boo danced. 

This is how I finish the sentence, My best summertime memory this year was Boo dancing on the beach.

 


(Gosh I hope the video works) 

Now tell me, what was your best summertime memory this year?

Finish the Sentence Friday

Twisted Tuesday….

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Jen is going to be so freaking proud of me. I think I am following the rules this time! Today is the 27th, right? See I even looked a second time to make sure I was paying attention. Then I thought I could have sworn this was already a topic…turns out that was just about dumping some one and feeling bad about it. And then inspiration by way of a  mix tape fairy magically providing inspiration. In the form of an e-mail from Jen telling me exactly what this week’s topic is. Phew. Crisis averted.


Since I am so not ready to admit that I suck, I am throwing the best you suck songs into the mix.

Carrie Underwood probably has the best did me wrong anthem and she commits vandalism something we never expected from our sweet American Idol! This you suck song isn’t about me but for a rat jerk that just did this to his awesome wife.

https://youtube.googleapis.com/v/WaSy8yy-mr8&source=uds


Where is that baseball bat? Oh look, Miranda has it. (Quick aside, how many of us think Blake sleeps with one eye open?)

https://youtube.googleapis.com/v/rB7ONnfIjaI&source=uds


No one can sing you suck better than Ms. Simon. From being vain to not having time for the pain. Her lyrics about those who dare hurt us? Basically she says bite me but in a way that you never realize she is talking about you. Taylor Swift should probably take notes.

https://youtube.googleapis.com/v/E3_l5Ss203I&source=uds


And  who says you suck better than Carole King? The ultimate song goddess. For your listening pleasure: You go your way, I’ll go mine (because you suck).

https://youtube.googleapis.com/v/dSNYToj7yFw&source=uds


Okay, I admit I added the you suck to the end of the song title. But it kind of works, don’t you think?

And I just realized that I (sort of) broke the rules by only having four songs on my mix-tape. Crap. But wait, I can totally fix this!!!

Should you be the recipient of any of the above songs saying you suck, may I suggest you reply:

https://youtube.googleapis.com/v/fC_q9KPczAg&source=uds

Oh and to my husband, should I ever need to send you a you suck tape be afraid. Be very afraid. Because I am so starting with something from Miranda!