Category Archives: developmental

Why I’m not mad at Toni Braxton

Toni Braxton is facing a lot of criticism over her memoir, Unbreak My Heart. According to E-online, Ms. Braxton writes that she believed her son’s autism was “God’s payback” for having an abortion.  While many are understandably upset about Ms. Braxton’s provoking statement, I think what is being missed in the outcry is she states in her book she BELIEVED. With a “D“. 

What parent of a child with special needs has not had that thought? That our child’s disability was because something we did? That you might be being punished for something? That you did something wrong? Did you have a cocktail before you knew you were pregnant? Did you scuba dive? Were you a bad person? You and your spouse fought. You cried when you found out you were pregnant.
When Boo was first in the NICU I wracked my brain trying to come up with some reason why. Every time some new worry arises with her I wonder why she suffers. I still am searching to the ends of Google to find an answer. I have blamed myself for not wanting a second child. I blamed myself for knowing that I probably had a glass (or two) of wine before I knew I pregnant. I blamed David, thinking surely something he must have come into contact with at work did this. This thing that no one could explain to us.

If not one parent has ever had that thought, I call bullshit. Yup, I just swore at you. Because it is impossible for me to believe that when told your child had XQZ you handed out cigars and said how proud you were that your child may have to struggle more than others. That not once did you second guess yourself, your doctor, your medical history or your God.  It is easy to blame God for a lot of things. He very rarely comes to the witness stand. He is kind of busy.
Photo Credit: Finding Ninee


He is blamed for war, for famine, why not question him for your child’s disability or illness? Or your own. I imagine there are many cancer warriors who wonder why they got sick. What did they do or not do?


In Ms. Braxton’s memoir she is recounting her feelings. What she went through as a parent of a newly diagnosed child. I do not agree with everything she states in her book. But am I outraged that she once thought God was punishing her for a decision she made? That she went there and bared her feelings? We might write in our diary, our blog, our book about our feelings and fears. We cry to our friends, our partners and our moms. We go through a period of grief of the child that might have been. That is natural. Am I sometimes fearful that one day Abby or Bridget might read a post I have written and be hurt by it? Of course! But I am also aware that my love for them will overshadow any fears or thoughts I have had, they will read the whole post/entry and not take a line or two out of context.
Did Toni Braxton set autism awareness back a decade with her memoir? Nope. Not buying it. Only if the crazies out there start using it as an anti-abortion statement. I can see it now, don’t have an abortion your next child will be punished. Let’s face it, there are idiots out there who use whatever sound bite possible to defend their position. Even if there is a thousand reams of information to back up the opposite position. Of course I wish she spent more time talking about how wonderful her son is, how proud she is, how she realizes that autism (or any disability) isn’t a punishment. That life with a child with special needs is a life-altering journey. 

But it’s not my memoir. 

Most parents would never, ever, tell her child that she wondered why her child was born with a disability. We tell them that they were born perfect. There is nothing “wrong” with them. We lobby for inclusion. We shout from the rooftops our advocacy. 

We believe deep in our hearts that our child is perfect, beautiful, amazing and we are astounded by their will.

But at one moment in time, each and every one of us wondered why “it” happened. Then our hearts grew ten times too large and we stopped wondering and began living. 

At least I’m honest enough to admit it.



Special thanks and a shout out to my friend Kristi at Finding Ninee who drew God on the Witness Stand with three hours notice, never asking why I needed it! And to Tia who pre-read this post and encouraged me to post it knowing others may disagree.


The Challenge Wall

A few weeks ago I wrote about a new program at Abby’s school that celebrated Special Needs Awareness Month. I had to take down the children’s challenges as the program had ended (I did save a few) but thought you might like to see how incredible this project turned out.


We incorporated celebrities who are outspoken about their difficulties and placed the students (and others) challenges above, below, next and over them.

Each week the poster of the celebrity changed, but the children’s never did. To show that you might always have a disability, but you will always be you.


Then the kindergarten teachers took our idea and blew us away, having the students draw their challenges.





I am overwhelmed by how honest and forthcoming the students were. There were so many honest conversations at home, at school and on the playground.


This video was shown on World Down Syndrome Day. The one response from the kids? They wished it showed all disabilities not just Down Syndrome. But they understood the message: your friend is your friend. It’s as simple as that.



I would like to thank Abby’s school for taking on this month long program and simply rocking it. The Challenge will be back next year and in more schools. I cannot wait to see how the kids evolve.






Meet Boo’s friend Zachary!

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

A moment to say WOW

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…

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
 
  


Sometimes I break….

Boo has had a bunch of appointments over the past two weeks. More of the same, she is doing great/keep doing what you are doing. The thing is, and here I am being selfish and a total nitwit, Boo hasn’t ‘evolved’.  What I mean to say is that yes, she has had a language explosion and she is doing great. I am not trying to minimize her gains at all. But when you look at the whole picture she is still in the 18m to 2Y developmentally.
 
Yes she has made gains, but she hasn’t advanced. She seems “stuck” at this stage. I know I need to be patient and keep doing what I am doing. But if her developmental growth is starting to stagnate does that mean anything or is it that the gains are more noticeable at 6m old than they are at 4 & 1/2?
 
If we “judge” (seriously, my word of the freaking week) by the developmental scale for a 1-3YO: she can walk alone, but not run. Boo can kick a ball, but does not have awareness of self. She cannot find a hidden object 2-3 levels deep (what the hell?) but can if it is behind your hand. Does she play make believe? Again, no.
 
Then I (idiot that I am) looked up the 3-5 YO developmental scale. (file under what were you thinking?). Walks up and down stairs alternating feet, no but neither does my dad. Climbs well? Check! Bends over without falling, no but then neither do I. Understands his/hers, no. Matches an object to a picture, sometimes. Can take turns, sometimes (but both Allie & Hubs have trouble with that concept.
And let’s not even put the whole potty training thing into the mix.

Okay, I know I should stop the pity party…but I feel so, I don’t know…if down is the right word. The developmental doctor wanted Boo to start at-home services. At first I was like no way, when do I have time for that? But because she was so insistent that I arrange it, I called the services. Guess what Boo isn’t eligible. Now I was ticked off that here the doctor wants her to have services and she can’t get them. Of course, the fact that I didn’t want them in the first place is totally irrelevant.
Gosh, I feel like a teenager. Not wanting something and then getting ticked that I didn’t get it.
Anyway, I am sitting at home having a pity party for myself and totally mad at myself for having it. I know I should be happy that Boo is safe and healthy and home. She is not on a feeding tube, oxygen or sitting in a chair staring at the wall. Her issues are so minute compared to what other children are triumphing over.
But, seriously, sometimes it just gets tough to be the upbeat supermom.