Category Archives: friends

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.

Friendships

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The other day I was texting with Kristi over at Finding Ninee. Kristi started blogging right after I did. We found one another through a link-up and supported one another before she got all famous and stuff. She was my first blogging friend turned real-life friend. Kristi is the one I can text at 11pm with something that is so wrong it is funny. 


When we first shared our real-life personal information I warned her if instead of being her awesome self, she was in fact a 40+ year-old man, living in his mother’s basement, wearing a wife-beater t-shirt that has a BBQ stain on it I would be extremely pissed off.

The added worry in wondering if Kristi really was a Kristi and not a Kurt was David being able to say, “I TOLD YOU SO” when it comes to the internet, Facebook and the devil.

Back to my rambling point, on top of worrying if Kristi is a Kurt, my friend Kate from Another Clean Slate had me worrying about a Zombie attack and if we would survive. I told her I was sure we would. We just have to be faster than the person behind us. 

Now I have spoken on the phone with “Kristi” so I am pretty sure she isn’t a Kurt. Though she has a smoking hot voice on the phone. I’ve met Kate in real life, I made her run and she still talks to me. So I know two out of the blogging friends I’ve met on line are real.

Bron, Bron has to be real or else I am never going to be able to go to Australia. And that is just not fair.

But what about the others?

Dana from Kiss My List for example. She seems wicked nice. Someone I’d like to invite over for a cocktail and chocolate. But what if she is not? What if she is a closet serial killer and she really makes lists of her killings not her DIY projects?

Does Christine from A Fly on Our (Chicken Coop) Wall really have all those kids? Does she really live on a farm and have a great winter coat? Or….maybe that farm is just a home for disturbed children. It would explain all the trips to the ER.

Is Jen really a lover of music or is her Mix-tape challenge just a ruse? Maybe she is a spy from the NSA trying to figure out what the lyrics really mean.

I am pretty sure Ellen from Love that Max is just a front for the Disney Corp. How else does she get all those trips? And she doesn’t even know I exist so moving on….

Is K really a college kid? Maybe Transcending CP really isn’t what I think it is. I mean CP might not stand for cerebral palsy but a Coy Playboy with transgender issues.

Either Janine or Lizzi could be a Zombie.  Have you noticed they are the first to comment or tweet? No matter what time of day or night! Lizzi has been running so Kate & I are screwed in the event of a Zombie apocalypse.

Sylvia from Faithful Mom of 9? Maybe she is really isn’t homeschooling but running some type of cult. Cause who could home-school NINE children yet not drink. Something fishy there.

I’m pretty sure Emily from Oh Boy Mom! is really a mom with more than I have on my plate. But who knows, she could be running drugs with all those trips to the Bronx. I visited the Bronx once. Once. By mistake. We were towing a camper. Never tow a camper with Masshole plates on it through the Bronx.

Michelle? What if Big Blueberry Eyes really aren’t blue but Photoshopped! And, gasp, what if she isn’t a Red Sox fan after all? I was just thinking how cool it would be if her husband got stationed up here. 

What if Rachel really isn’t a geriatric mom?  The Tao of Poop cannot possibly be that pretty and serene. Geriatric people are cranky. She might be really a teen mom with great hair. Cause you know teens they are always so easy going.

Ruchira? Who can be that insightful. A person who can take away all the trappings like Abracabadra  and make the world seem right? She cannot be that all knowing.  

When I think about it you are all suspects: either serial killers or zombies. And I met most of you via Love that Max. So really, it’s her fault if David is able to say I told you so.

Man I hope all my bloggy-friends reading this have senses of humor and really are not serial killers. Maybe I should look for a protection program.  I’m sure Don can help me out with that right? Cause cops cannot lie, right?

If you don’t hear from me for a while check out my friends blogs, maybe they’ll confess!




A year of thankful

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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. 

January, I was thankful for the Liebster award.

February, I was thankful for Abby’s sense of humor and honest about who her favorite person is (hint, not me).

March, I was thankful for people understanding that the word Retard means something different to me now and joining me in abolishing the word.

April made me thankful for Jimmy Buffett as I realize he gives us the soundtrack for a laid back life. The sound track, not the manual.

May I was thankful to be able to tell people what drives me crazy.

June I was not thankful for yard work but happy to know I am not alone.

July I was thankful for all the ways my girls make me smile.

August I was thankful for husbands.

September I was thankful the girls were back in school. Also that boys are gross.

October I was thankful for Boo’s therapists and friends that let me take the easy way out.

November I was just thankful for Boo.

December I am thankful that I have come a long way since January.




Ten Things of Thankful

Happy Day!

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Today Bridget turns five. FIVE. That is half a decade I didn’t think I would have with this beautiful child. I have a tradition. Every year I thank everyone who helps her be the best she can be.


Her school. Her teacher and assistants. Her classmates that include Bridget not due to inclusion but due to friendship. With their help she has found her voice. A year ago she was in class but quiet. Now she bosses her classmates at the top of her lungs. A child we were told would never speak shouts.

Her school therapists. They have the hardest job out there. They remain kind but strict, loving but firm. I honestly do not know how they care for the children in this program day in and day out. They are poorly paid, over qualified and have unending patience. We are so very lucky to live in a town where children with special needs are included and counted.  With the upmost care they have taught Bridget how to jump, how to draw a circle and how to be plugged into the world around her.

Her Spaulding team. She has the best bunch of therapists at Spaulding. They have become our support system, our friends and our race buddies. 


They care for more than just Bridget. Her SPT has helped Abby with her homework, or well tried to. Her OT has let Abby be involved with sensory play. Her PT has let Abby be a part of the obstacle course. It’s more than the therapists. The secretaries greet Bridget with a smile and a hug. The medical assistants whom we are not patients for pick Bridget up and listen to her babble. They meet David & I out for dinner. They see us as more than parents of their patient.

Her Children’s team. This year Bridget graduated out of three programs. Her MD list is down to eight. That’s right EIGHT. She still has her quirks but now only needs to see the other doctors in an emergency. She is STABLE people. As in stable does not need intense monitoring. As in has not been hospitalized in TWO years. As in only has to go to CHB twice a year.

Her friends. The little girl who invited Bridget to a birthday party. The friends that come over to our home because it is easier for her than going to theirs. The friends at our Irish pub who smile at her antics when we take her out for dinner. The friends that encouraged her all summer so we could have this moment. This beautiful moment:

Her family. The ones the read this blog and don’t get upset with me for my openess. The ones that know by reading this blog they are helping Bridget. The ones that don’t read this blog but show their love to Bridget by supporting her every moment.

Her sister.  Abby is aware that her sister is special. Each year the definition, in Abby’s mind, of special evolves. But what never wavers is her love and support. She is the reason Bridget went into the ball pit of terror in OT. Her name was Bridget’s first word and she is the first person Bridget runs to after school.

Today is Bridget’s Happy Day. And I thank each and everyone one of you for making it so.

Being included

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Last year I was humbled and so surprised when Boo was invited to another child’s birthday party. I remember writing that she was included, that the children in her classroom see Boo and not a child with a  disability. But I worried that she wasn’t really a peer. It ended up being a moot point, as we were unable to attend the party due to a family commitment.

At that time a friend wrote to me and said it so wonderfully that just that day her children, both of them, proclaimed Boo to be their friend. That in children’s minds they are all peers. It really is just us adults that make the mistake of thinking otherwise.

I have remembered those kind words. You see, Boo was invited to another birthday party. Yes, I was kind of worried and spoke to the mom (who is also Boo’s therapist at school) but those words kept coming back to me. I decided to be honest and let her know my fear. That we wanted to attend, but I didn’t want her daughter to be disappointed when Boo, well is Boo. The party was being held at a gymnastics center, there would be obstacles and activities that she just wouldn’t understand. She might become overwhelmed or disruptive. I honestly didn’t want Boo to detract from another little girl’s first ‘for real’ birthday party.

Thankfully, the mom completely understood and reassured me that all would be fine. I’m sure it helped that she works with Boo a couple times a week! We went and Boo had a great time. Sure, she didn’t participate like the other children. The teenagers running the party had to pay her more attention. They were accepting and kind. I only had to rescue her twice when she got overwhelmed. The older children attending the party made sure she was safe and the youngers ones just ran around her.

But she had fun! She ran around the obstacle course in her own manner. She ate her cupcake (and tried to eat the child’s next to hers). She watched her friend open presents (and tried to steal them). She squealed at the Princess goody cup and stickers. She proclaimed HAPPY DAY and HAPPY CAKE to her friend.


She was a typical kid having fun at a birthday party.  And just like that typical kid, she barely stayed awake for the ride home!

I am so thankful that last year a kind friend planted the seed: that adults see the disability not the children. I realized as I was writing this post that four years ago I never imagined this day. THIS day that Boo would be invited to a party not because of inclusion but because of friendship.

A happy day indeed.


I collect you…NOT

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Are you a collector? I mean, serious, as in will ravage any antique/yard/estate/shop sale to obtain some knick-knack? Allie has collections. She has collections of Barbies, Horses (thanks Auntie K), sea glass and Nutcrackers (thanks, mom).

And now there is that freaking rainbow loom. Guess how many bracelet collections she has?

David doesn’t really have collections. He is more of a pack rat. The man has a t-shirt from 1996 (He is wearing it now) and even one from 1983 (REO Speedwagon)–worn last weekend.

Boo has recently started a sticker collection. She doesn’t take the stickers off the backing, but she walks around with them. I blame her Speech therapist.

Me? I don’t collect so much. Don’t get me wrong, I have knick-knacks galore. But I didn’t buy any of them.  I like them, they are unique. Like the baking elves, Williamsburg signs, Cape Cod signs, Carolers (now only out at Christmas) and other what-nots.

I cannot believe I just said what-not.

The collection, though, I am most proud of is my friends. I have kind of an eclectic group. One I am meeting this weekend (woo hoo) for the first time in real life and others I have met via the blog. But also those close to home. The ones that I can just drop by and have a margarita with or a fine glass of wine.

No I do not collect wine. It really doesn’t stay around long enough to collect.

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The Journey

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Yesterday while waiting for Boo in therapy there was a little boy who was walking around, in his own world and knocking on the walls. He was beautiful. It occurred to me at that exact moment that if I didn’t have Boo in my life I might not have noticed how absolutely beautiful.

I would have looked away.

I would have thought to myself what is wrong with that boy?

I would think, yuck look at that drool.

I would not have spoken to his mom, thinking I was sparing her embarrassment.

I would have been wrong and heartless and selfish. Because I would have thought to myself thank God Allie is ‘normal’.

Thankfully, I have Boo.

So I saw the beauty in the way the little boy comforted himself by knocking on the wall. I looked into his eyes and saw the light shining inside. I recognized his drool and realized it was because he was concentrating so hard. I spoke to his mom, asked how old he was, what school did he go to.

I made small talk.

Not about her son being in different, but how he was the same.

In that moment I was thankful that Boo had made me a mom with special needs.

I remember when I was pregnant and told that due to my “advanced” age my baby was at higher risk for birth defects (hate that word now), Down syndrome and a host of other scary things.

I opted for just the blood test and told God I could handle Down syndrome. But nothing scarier. Why Down syndrome? Not because I knew a lot of about it, but because children and adults with Down syndrome were the least scariest to me. I saw them in the playground, the market, in my life. “It” seemed manageable.

By the way, I realize how arrogant and condescending that sounds. Bear with me.

When the geriatric tests came back negative, I was relieved and moved on with my pregnancy. Then Boo was born and I learned that it doesn’t matter what your child was born with, a trip to the NICU is beyond scary. At that time I thought it was the scariest thing I would ever go through. Boy was I wrong.

It is also enlightening.

Being Boo’s mom has opened my eyes and my heart. I am a better person because I am a card carrying citizen of Our Land. When I see a child (or adult) not acting typical, I do not jump to the conclusion that the child needs discipline. When I see a parent at the end of their rope in the grocery store, I reach out to them.
I learned that by never hiding Boo’s light I am opening our family and friend’s hearts to others in the community. Most of them have now banished the word retard. They are teaching their children to do the same.

My friendships are now more meaningful and important. I have become more vocal and more of an advocate. I have gained friends that I would never have come into contact. I have become more outgoing and outspoken. I certainly wouldn’t have begun blogging. Blogging opened up a whole new world of laughter and support.

All because of Boo.

Do I have moments when I wish that Boo had been born “typical” or with what I thought I could handle? Sometimes, but only because then I would have a tour guide who would know what path to take.

Yet I wouldn’t trade this undiagnosed journey for the world.

 

Well we are half-way there

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It’s official. We are half-way through the year. I cannot believe six months have gone by so quickly. I feel like just yesterday I was trapped in the house with two children and no wine.

Since it is July 1st I thought it would be a good idea to see how I’ve been keeping those darn resolutions. Short story, it starts great but doesn’t end well.


#1 begin running again. I am counting this as a win. Sure it took me until the 2nd week of June to start, but I’ve done a 5k and that freaking counts.

#2 Be a better friend to others than they are to me. Well, this one is a 60/40 split. I know I have taken way more than I have received. But I still have time to even the score.

#3 Give up Diet Coke. Again, it took 4 months for it to work. But I am officially 2 and a half months sober. Is it considered sober to be without diet coke? I know I am not as energetic.  Still counting it as a win.

#4 Hugging the girls versus screaming at them. Based on this past weekend I am definitely failing in the hug department. Although I do let Allie use my hot tub for a bath so that should add to the bell curve. Plus it is summer so I won’t be screaming over homework.

#5. Read more, watch TV less. Damn Kindle fire. I am definitely watching less TV but now spending more time playing Words with Friends. Julie can tell you this is true. Although since she is often winning in our battles she might be kind. Epic fail.

#6. Less time venting, more time rejoicing. Yeah, kind of failing at that one too. Tia will keep me honest with that one.

#7. Keeping a cleaner house. Let’s see between blogging, working, Words with Friends and dog hair….yeah I cannot even justify this one. Sorry. I just really don’t want to dust.

#8. Finding balance. I think of it as becoming more of a contortionist than a gymnast. No balance required but a chiropractor would be handy.

Along with a maid.

How are you doing on your New Year’s Resolutions? I cannot be the only one with a barely passing grade!



I’m thankful…

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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!


Ten Things of Thankful

Listen

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

Five Minute Friday

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.




Listen to your soul as it expands to include a love never imagined. When you first conceive friends will tell you that there is an automatic feeling of love. This isn’t always true. With Allie I was too nervous, it took a while to feel that connection. It was there, I just didn’t listen to my heart because I was too worried I was doing something wrong. Then one day I realized that my soul had grown from the love she gave to me. Then Boo came on and it grew again. Kind of like the Grinch who stole Christmas whose heart grew three times too big.

Listen to yourself. This week there has been a lot of blog posts about how woman perceive themselves. Those who think they are fat, those who think they are too skinny, those who worry about the message we are sending our daughters on what a woman should look like. But we should worry also about our sons. They too suffer from body image issues. So listen to how you describe yourself, and stop. Because your child is listening to you and transferring those thoughts to themselves

Listen to the moments of opportunity. Let yourself forget your own struggles and help some one who needs it. It may be as simple as educating a cashier at a grocery store that the word retard is not an adjective. It may be just stopping in an elevator and hugging a stranger who is having a hard day.

Listen to your children. Yes, it is so hard when they talk non-freaking-stop. But once in a while you may discover that they know more than you do. Listen how they stop and spy a spider web that is home to a fairy. Don’t you wish you could hear what they hear?

Listen to yourself, you might be amazed at how awesome you are.

Stop. Okay enough preaching. Go and enjoy the weekend!!!