Category Archives: developmental delay

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

I did it!

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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!



With those words of wisdom we were off! I started off with the pack, that quickly left me behind. David (thankfully) believes in leaving no man behind so he slowed to my pace. My goal? Keep the 80 year-olds behind me and not come in last.

That hill? It was after the first half-mile. As I am struggling to breathe running up the hill, David says: I know a short-cut. NO! I am not cheating, I am running this damn hill. Boo, in the stroller, is yelling RUN. Now in his defense he did offer to take over pushing her. But I was making a point and have way too much pride to give up.

Although I did slow to a walk. As we crested the hill, David encourages me to start running, after all it’s now down hill and we might be able to pass a couple of teenagers. We round the corner, Boo yelling ‘fast’ and me trying to breathe.

But we did it, we ran a 5k in under 38 minutes (okay, very close to 38, but it was under!).  There is rumor of a runner’s high. When the adrenaline starts to flow and all is peace and harmony.

I never found it.

This is what went through my mind as I ran (thought because I didn’t possess the energy to speak):

Boo really has to stop eating donuts and cookies
David knows way too many people in this town
What time does the Irish Pub open
The next time David jumps onto a staircase and shows off I hope he breaks his ankle
Crap, did I take a wrong turn
Boo screaming “I’m running” really isn’t helping
Does that girl in front of me know her ass is hanging out of her shorts
Why didn’t I know about the dress code for this race
Who can run in all that make-up
Boo please stop yelling FAST I’m doing the best I can
Where the hell is that runner’s high
How can David NOT be out of breath yet
Am I supposed to be listening to his stories
If I finish this I am so getting a burger and a glass of wine

HOLY CRAP There is the finish line!

Phew I’m not the last one across and I didn’t eat one bug

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!!!

The Hardest Part of My Day

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There are some days when all I want to do is give in to Boo. When I want to just give her a cupcake, okay a third cupcake. I know, in my heart, that the ABA therapies are working. That Boo is better with all the work her therapists do with her on a daily basis. Sometimes the work gets the best of me.

At workshop when Boo gets stubborn they wait her out. They make her do her work (I wish they could make Allie do her homework). But at home I struggle. If I ask Boo what sound a monkey makes and she doesn’t answer we move on. After all there are dishes and laundry to do, hugs to be given and Allie’s homework to be done. Concerts to be tortured enjoy. Oh and dinner to be made.

At school she HAS to answer. Now I know what you are thinking. Does it really matter if Boo answers OO AA for a monkey sound. Probably not. But if some one asks Boo her name she HAS to answer. Especially if she goes missing. Since she refuses to say her name that is an issue. And it all starts with OO AA.




Actually it starts with her name. She will say it, sometimes quietly, when asked. But on her terms, her oh so stubborn terms. She digs in on the most surreal things. Okay surreal to me. Why doesn’t she want to say OO AA? I mean she said it the whole way to Niagara Falls. Over and over again. I wish I could have an inkling into how her mind works.

I spoke to her speech therapist about it. She feels that sometimes Boo has a difficult time finding the word in her brain. Like there is a detour or misfire. She will consistently say cow but then the third try she says cat. Almost as if the repetition is tiring on her brain. She encourages us to continue fighting for those moments when Boo is in the moment and can say the word or perform the action we are demanding.

Her SPT reminded me to be the mom and not the therapist. That it is a hard, difficult balance between the two hats we have to wear.

And that’s the hardest part of my day, when I have to be the therapist and not the mom. So we went home and had cupcakes for dinner.


 
This extremely non-funny  post for the Finish that Sentence Friday is to be blamed on the hosts. Usually I can go light but well it has been that type of week. What with falling down and all…

Finish the Sentence Friday
Let’s hope next week’s sentence is something like….Believe it or not I let my husband live after he…. 

Meet Boo’s friend Zachary!

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I’d like to introduce you to Boo’s friend, Zachary. Zach is a fabulous boy in Boo’s class who happens to have autism. Zachary was the first boy to hold Boo’s hand. It was so awesome, watching them walk into school together.

Like Boo, Zach is a frequent eloper. If your child has never eloped count yourself lucky. Boo has tried to escape us many times. Not on purpose or intent. She is just not aware that she is no longer with our group. We can be in the yard playing, blink for just a moment and she is gone.

It is a scary moment for any parent. But for a parent like Zachary’s mom, Laura, it is beyond terrifying. You see, at fiveryears old Zachary is considered non-verbal. He would probably not respond to calls of his name, nor would he be able to tell a stranger his own.  Zachary is always in motion. Like Boo, unless he is contained in a stroller he is off. He has no awareness of the danger. At home doors must be securely locked (even in the heat of summer) and windows must have a no-escape feature. He sleeps in a secure tent to limit the chance of him wandering while his parents try to sleep. Yes, I said try. Any of us with a child who has the need to wander sleep with one ear open.


Zach’s awesome parents are turning to 4 Paws for Ability, a non-profit organization that places certified service dogs with children of various disabilities. In Zachary’s case, his dog would be trained to provide sensory input, interrupt dangerous behaviors, calm meltdowns and most importantly the dog would keep Zachary safe. The dog would be trained, in the event that Zachary did elope to find him. The dogs are trained to follow his scent and locate him within minutes.

What more could a parent ask for? Well, the money to provide their child with the security he deserves. A certified and trained dog costs $13,000. Parents of children with special needs do not have discretionary income. Our children cost more than the typical child. Our incomes are lower than before as we need to take more time off of work for therapies, doctor’s appointments and other activities to assist our children. Our free money gets spent on sleeping tents, door alarms and adaptive equipment.

To have $13,000 to spend on anything would be huge. To have the money needed to provide safety for our child would be a miracle.

I asked Laura if I could share her story to spread awareness. Last month two families lost their child to autism. Yes, I went there. Autism was the culprit in their death. A child who eloped for less than 20 minutes from her grandmother’s house and was not found alive. This is a tragedy.  If it only takes a dog that can locate a child within minutes and save a child I am all for spreading the word.

I am also hoping to help Zachary in his fundraising efforts. They have currently raised $2,400 towards security. If everyone who reads this blog donates $13 then forwards this post to 20 of their friends who donates another $13 it would only take a thousand readers to provide Zachary with a safety friend.

And allow his mom and dad to sleep a little more soundly.

To donate please visit http://www.razoo.com/story/4-Paws-For-Zacharyor you may mail a check with his name on the memo line to: 4 Paws for Ability, In Honor of Zachary Fiorillo, 253 Dayton Ave., Xenia, Ohio 45385. (If you do send a check, please remember to add Zachary’s name!).

To learn more about Boo’s amazing friend, please visit: https://www.facebook.com/4PawsForZachary

How not to get the mom of the year award.

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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.


A moment to say WOW

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I know that Boo is so incredibly lucky. Yes, she struggles. However she struggles so much less than other children. And here is why:






Boo you see has the best, ultimate best, village. Not everyone of her village is shown in this photo. The people above dedicated Sunday to walk with Boo in the NSTAR Walk for Children’s Hospital. We formed our Brigade 5 years ago to show how much our family was indebted to the Saviors who saved Boo’s life and our sanity.

Five years later, CHB continues to care for the best hugger in the world. However we do not owe Boo’s advances to just CHB. She owes her growth to the friends, family, therapists and teachers who interact with her on a daily basis.

I read so many blogs where I am saddened that they do not have a village. So many moms feel isolated, alone and afraid. Too many parents of children with special needs become loners. Their lives are centered around their child, leaving them little choice.

Maintaining a village is not easy for a lot of us. We are pretty out there with Boo and have been since her birth. I know the present is the easy period. As she gets older life may become harder. I think that is why our family is so grateful for our village. 

Boo’s teachers, aides and therapists have become extended family. Our friends have become watchful guardians when they see Boo in school or at a party. Everyone we know have invested themselves into our beloved child.  Recently I was at the Supermarket and a teenager came up and said hi to Boo. I had no idea who she was, but her friendliness touched me.

So I am taking a moment (or two) of your day to express my gratitude to Boo’s village. Those who walked 7-miles on Sunday and those who cheer her on every minute of the day. Those who read my blog and cheer us on. Those who I work and live along side. The countless people who reach out and hold our hands through this unsuspected life.

Thank you to all of you who share our heartache and joy.

From the bottom of my soul, thank you.

 

I hit a turning point in my life when I…

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Growing up sometimes sucks. You have to grow up at different points in your life. First you have to learn to tie your shoes and you learn you can no longer depend on your mom doing everything for you. As you get older you learn there are times to lean, times to cry and times to put your big girl panties on.

I hit a turning point in my life when I accepted Boo’s undiagnosis (yes, I just made up my own word). When Boo was first in the NICU we didn’t really think past let our baby live. It was on her second admission at just a month old that I began asking, “what was wrong with my child”.


I wanted to know the why so I could know the outcome. I needed answers so I would know how to “fix” Boo. I wanted a manual on how to make her “better”. I felt it was “unfair” that she had some unknown genetic abnormality. That she didn’t fit the mold of any diagnosis, disease or syndrome.

And four years later, I still feel guilty for my poor choice of words.
 
From her pediatrician to her neurologist to her genetics physician I would demand answers and be told: you may never have the answers. Just keep doing what you are doing, eventually the science will be there to help Boo. Notice they said help, not fix.


I don’t know when exactly, I put my big girl panties on and stopped focusing on “why” or “fixing”. It took too much time and too many admissions. Boo was put through so much testing. Necessary, but painful testing. Heartbreaking testing that gave us more questions than answers.




At some point I hit a turning point and I just accepted Boo’s undiagnosis. I stopped using Google as a diagnostic tool. I began accepting this life as a mom of a special child. I still carry on with doctors, therapy and special programs. I advocate for awareness. I have Boo “on display” so others will be invested in her life. Because someday the science will be there to tell us why Boo works harder than most children.

Yes, the why is still important but not the most important detail of my day.

And when I hit that turning point? That was the day I began living life to it’s fullest with Boo.


This is how I hit a turning point in my life to Finish that Sentence Friday. What was your turning point?



Finish the Sentence Friday
 
  


The day we tortured Boo

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We are surrounded by the ocean/beach. How we had Boo, a child terrified of sand and all that is beach is still a mystery to us. But we are determined to make her a beach bum. Every summer we take her and in the beginning it is horrible. But last year for the first time Boo stood on the sand! It took crocks, socks and a pretzel stick. But she did it!


It took a lot of work for her, but we were all so proud. This year Boo walked on the grass so I (mistakenly) thought she was ready for the beach. Sure she freaked out at home when I took her socks off and made her walk barefoot. But it will be great, right? We put the girls in the jeep and drove onto the beach.

Big mistake. I swear it was the windiest day of the year. Boo did not handle it well. The poor thing whimpered for an hour. We tried everything. Including hiding her under a blanket.



Unfortunately we choose the windiest day of the year for her first attempt. It was so bad a friend left because her husband was being so cranky! At one point we looked down the beach and thought it was fog, but nope it was sand from the dunes.

You can see her trying to be brave. She was watching Allie have fun and but didn’t realize Allie was having fun. She thought the waves were hurting her sister.




But in the end, after about an hour, we finally gave in and packed up to go home. All we heard was “I no like” (hey a sentence). Once in the jeep life was calmer. For the first time she didn’t panic in the jeep at the beach.

So progress was made.

Then today we got the notice that the beach is closed through most of July due to some endangered birds. Apparently birds take precedence over summer fun.

I think if Boo realized the reprieve the birds gave her she would do a happy dance.

Workshops…not the end of the world!

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When Boo began her new program in preschool it included monthly workshops. The workshop is once a month for 2 hours where a parent observes the ABA/discrete trials that our child undergoes every day.

The first workshop was very difficult for me to observe. I am happy to report that every month since then has been easier. At first I was just so unprepared. I didn’t know what ABA was or the whole ‘compliance’ issues.

Eight months later, I love the workshops. I get to know Boo’s therapists/aides better. I learn that Boo is not saving her stubborness for home. I realize why Boo is so disjointed on the weekends without the routine of her school day. Not that this knowledge will help me with devising a weekend routine.

But if you are honest with the team and allow them to be honest with you (in other words, don’t think your daughter is a princess) both “teams” end up serving Boo in the best way possible. I relayed some issues we are facing this summer (we live near a beach and Boo is afraid of the sand) and they will invent a program to make the beach easier. 

The other bonus of the workshop is I can fill the team in on Boo’s medical updates. I can tell them face-to-face what programs neurology and/or developmental medicine want to add and Boo’s team is usually one step ahead of the game.

We are never leaving this town. I still haven’t figured out why Boo’s program isn’t available everywhere. But I think we should make it our mission to find funding for your town.