31 for 21

I have been blogging for about four years now. In my first year my friend Michelle at Big Blueberry Eyes began hosting the 31 for 21 challenge. Although Boo doesn't have Down Syndrome she has a lot of friends that do.  I have participated for the past three years and will do so again this year. 

And this year I am starting on time, so bonus points!

Lessons Learned

I read a fantastic post from Eli at Coach Daddy the other day. So wonderful I decided to steal  ahem, borrow  ahem, use it for inspiration. Lessons he learned from the most valuable source ever: his children. It made me think, as much as I have tried to teach my girls, the lessons I have learned from them are immeasurable.

TBT--That Parenting Manual needs updating

Welcome to my version of Throw-Back Thursday, blog style. I'm taking Thursdays to revisit some older posts.  I hope you enjoy the trip back in time.

Originally posted 23-AUG-2013

You know how before you give birth some one gave you a What to Expect book? You also probably did a birth class. None of which prepares you for life with an actual child.

Actions matter

It happens, a lot. A child will see a person/child different from them and in the loudest outdoor voice possible they will ask:

"Why is that person black"

"Why are those two girls kissing" 

"Where are his legs"

"What is that thing in that boy's throat"

As parents we think we are doing the right thing by saying "don't look" or distracting the child. But it's wrong. When you redirect the child, when you do not answer their questions instead of teaching empathy you are teaching them that there is something wrong with the other person.

You are teaching them that person is not to be looked at, to be approached and most hurtful to be friends with.

No interest

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.

3.5 I took the pledge. Will you?

Is she going to be retarded? I asked the neurologist. Boo was 11 months old. She had two EEG's and an MRI of her brain. They told us she had a "slow" brain pattern. That her development was delayed. That Boo would possibly need care for the rest of her life. That they don't use the word retarded any more. They use intellectually delayed.

I had moved from wondering if Boo would live past her first week of life to would she be retarded in 11 short months. It took another year for me to evolve from retarded to delayed. To understand and feel that a word is not just a word. That it matters what you call people. Here is why that revolution matters.

Got humor?

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.

Play dates

Here is the problem with play dates. The kids talk. To one another. They find out how the other child's mom is so much better than the one they came with.

A year of thankful

I haven't played with Lizzi in a while. Not that I haven't been thankful, just been to busy to give Thanks. I am sure I'm not the only one! To suck up show how thankful I am here I am breaking the rules (go figure) and doing 12 things of thankful. One for every month of 2013 I survived. 

Thanks

Yesterday was a crap day. For me. Not for Boo though. I wanted to let everyone know that not only did she survive the field trip she enjoyed herself. According to David she not only touched a pumpkin but plucked an apple out of a tree!

I know I wasn't alone yesterday in my meltdown. Other parents experienced the same emotions I did. They just didn't spew to the entire world. But I am glad I did. I almost did not post yesterday, fearful that I would offend Boo's teachers and therapists. Fearful that I would look like an idiot when David took her and Boo did not melt down. Fearful that Boo would melt down and I wouldn't be there to hold her in my arms.

I want to thank each and every one of you though, for supporting my meltdown with texts, e-mails and comments. I cannot tell you what it meant that you understood. Or if you didn't understand you empathized.  A friend put it so well, this was a case of mommy guilt at it's worse. Something we all go through during this crazy period of our life called parenthood.

Since parenthood is going to last for the rest of my life I know that there will be other moments when Mommy Guilt overwhelms me. I always thought Catholic guilt was tough, man I knew nothing before children!!

Including how I never knew that parenting was a team sport. So, thanks to each and every one of you who are on my team.

Grab This Button

 

 



Remembering the parent

I've been really hesitant to write this post. First, I hate to jump on a bandwagon. I also hate being late to a party, even a pity one. Mostly, though, I do not ever want to come across as ungrateful or one that complains.

Truthfully, I have absolutely nothing to complain about. I am beyond lucky. I acknowledge that my situation is as wonderful as it is rare. I have a terrific village who supports my sanity. When life gets overwhelming I have some one within a text, an e-mail, a call or a walk to lean on. I get date nights with my husband and girls night in.

Not everyone is this lucky. They are isolated. They stay at home with their child, change how they go to Worship, do not attend family events, cannot find a babysitter and not even think about getting a pedicure. Moms like Kelli try to do everything right. They think that it is less disruptive for their child to stay home. They feel family gatherings are too hard to keep everything together and peaceful.

I do not know Kelli and only know about her circumstance from Julie, Jill and Kristi's blogs. But I do know that not every child is like Boo. Some children with special needs are violent. They hurt themselves and those who love them the most.

When Kelli tried to kill herself and her daughter there was a lot of condemnation.  People have a difficult time understanding suicide. Let alone a mom who tries to harm her child.

The sad truth is, Kelli is not the only one out there. Statistically children in the US with special needs account for almost 10% of those who are abused. And they are abused by their caregivers. This is not just the US. World-wide disabled children are harmed more often than typical.

This is just supposition on my part, but I believe the abuse and the killings and the suicides happen because the parent has little or no support. We are very lucky where we live. Our Boo has a terrific school, afterschool therapies and if she was autistic we would be eligible for in-home support. But those therapists and teachers deal with our children hitting, spitting and hurting them. Yet they love our kids. They want our children to succeed.

Parents and caregivers are becoming the walking wounded, suffering from post-traumatic stress of living and working with a child who punches, kicks, sets fire to the house and destroys relationships. We love our children. We hate what their disability makes them do.

There is a difference.

There is also a reason why persons who work with children and adults with special needs have an extremely high burnout rate.

While our children in the US have a tremendous amount of government support available (if you know where to ask) for them, there is zero support for the caregiver. I am not talking about financial. I am talking about emotional support. That shoulder that you need to lean on.

Since I have that support I know full well what those of you without it must be feeling. Know that you are not alone but you have to let us know you need it. My friends know because I go to them. I break with Boo's therapists and vent to her aides. Sure a few will reach out, but the responsibility is mine to say I cannot do it on my own.

So I implore you, the Kelli's out there, to know you are not alone. But you need to scream and raise the white flag.

And if you know a parent out there with a child who has special needs reach out. Stop by their house tonight with a pizza and a bottle of wine. Stop by and check in on them. Keep inviting them to events, even if they have to say no. Remember that e-mail is great, but you can hide there. Call, speak to them. Make sure they know you are available to listen without judgment.

Let what happened to Kelli be a lesson to all of us to reach out before there is no one there to catch.



 

I'm thankful...

This week I am thankful for so much and am happy that The Considerer, Kristi and Joy have created this weekly remembrance.  A time to look back on the week that was and say, you know it didn't really suck.

10. School is officially out. Now, I know I will be singing a different tune next week. But to have no homework battles? Allie is doing the happy dance.

9. A night out with colleagues. I never go to business dinners. I usually make excuses don't have the time. But this week I went out to a nice restaurant with peers whom you would think outside of work we had nothing in common. Holy crap did we laugh. It was truly a beautiful night out, even if the Bruins lost.

8. I fit into my skinny shorts without having to suck in my gut, that much.

7. Remember that tent/tunnel system? Well guess who moved in...

Yup, Bailey discovered the tent

So I am thankful some one in the house is using it.

6. That while Allie did not get the BEST TEACHER EVER for fourth grade the one she ended up with she is not nervous about.

5. That Boo's summer program starts in just nine days. Please understand, her teachers and aides so deserve a break. I do not know how they do their job day in and day out with a smile on their face. But I am beyond thankful that they will be back soon. Even better her aide Sydney should be returning.

4. At a recent party there was a bounce house. Boo not only went into it willingly she loved it. The older kids ran all around and she laughed, jumped and was involved. This is huge from just a couple of months ago when the bounce house terrified her.

3. Kristi for letting me know how pet rocks came to be. It had been really bothering me for a long time. In all seriousness, Kristi's posts make my day. The fact that she took time out of her busy life to help me with a photo issue has not been forgotten.

2. I have two nieces due to be born within the next week. Kind of funny that they are being born so close together when they live a million miles apart. After a long time waiting to have children, my brother and step-brother's wives are due on the same day. I just hope they don't choose the same names.

1. That there are only 66 days left of hearing I'm bored summer vacation.

Happy Weekend everyone! I hope you take a moment to enjoy a glass of wine, a ray of sunshine and a quick thank you for making my days easier!

I did it!

After two weeks of "training" I did it. I managed to run a 5k and not be the last one across the finish line. My husband ran it with me. He did not train at all. Which makes me extremely jealous, as he never got out of breath.

The race started with motivation from the 19 year-old who organized the race to raise money for Crohn's Disease. Mackenzie is a cool kid who has battled Crohn's for the past three years. When she had to postpone starting college due to the disease instead of sitting back and feeling sorry for herself, she organized a 5k.

She is an inspiration for all children not to let illness, disease or hardship to defeat them. As she finished her speech she informed us that this was an "easy" 5k with just one hill. Oh, but it was a killer hill with a cemetery at the top if anyone couldn't make it!

Listen

On Fridays for 5-minutes I hop on the Lisa Jo Bandwagon and just write. Unedited, unrehearsed, just mind spewing to the keyboard.

Today's prompt: Listen


Listen to your gut. I hear so many parents of children who have special needs that do not follow their instincts. Do not believe just because some one has MD after their name it means they are smarter than you. You know your child from the moment you first feel them move inside you. You know when they first look at you. You know when they first hold your hand. You know when something is wrong before the doctors do. Listen and follow your mother's instinct to protect their young.

How not to get the mom of the year award.

No, this is not a post a poor me post. There are days when I know I am not being superwoman.  There are only so many balls I can juggle. Between mom, therapist, doctor, worker and wife.

There are days when I forget to put a sandwich in the lunchbox. Yes, I did, not this morning but recently. I have sent Allie to school three days in a row without bathing her. No she didn't stink. At least I hope not. I have tried to convince Allie not to attend her school social events and forgot to feed them lunch on the weekend. Unless cookies and yogurt count.

On Monday I seriously took the cake of so-not-mom of the year. Okay, I ate the cake that I had hidden from the girls. In the closet. But I digress.

Boo had a field trip. After the last field trip there was no way I wanted to go and work provided a handy excuse. Since I was already taking time off this week for another of Boo's appointments I could not justify being out of the office. Of course as so often happens, husband was also working.

I sent Boo on a field trip by herself. Okay, not herself, she was with her aide. I did have her tag pinned to her back letting anyone who may find her, if she wandered, what to do. I was a nervous wreck. But I left her anyway. She may have been the only preschooler without a parent there and she couldn't care less. From what I am told she had a fabulous time. I still worry that I have scarred her by not being there.

As we got ready for the day my husband and I were talking about how we couldn't go with Boo and how nervous we were. As I dropped Allie off at the bus stop she said:

Why are you so upset about not going on Boo's field trip? It's not like you have ever gone to any of mine.

Yup, not only is Allie the master of the understatement she is also the master of Mommy Guilt. Her revenge?

The Spring Concert. Tonight we are attending the grades 1-4 Spring Music Concert. As Allie is in 3rd grade that means we have to sit thru two grades singing two songs each and then the intermission. Did I mention the Bruins first Stanley Cup game is tonight?

The one upside to not winning mom of the year is that I won't have to dust the mantle for display purposes.