Category Archives: Child

When did I blink?

“Mom, when can I sit in the front seat?” said my child who is still small enough to use a booster seat but old enough that she wants to be the tween.

I remember the first time I had to place her in a car seat. How it took us three hours to figure out how even install the thing. I remember when we would keep her strapped into the car carrier while we grocery shopped.  How I didn’t know how to put the car carrier on the grocery cart, so I put it inside and piled up the groceries around it. (Least expensive shopping trip ever).  Continue reading

The joy of language

Boo gives me a lot of atypical milestones, moments, frustrations and joys. Every once in a while, though Boo gives me that typical parent moment when I realize even special children are typical in ways never imagined.

Boo has worked so very hard to obtain language. She has been in speech therapy since she was in two years old. Her therapists have never given up on her. They have persevered, coming up with new techniques, scaling things back or pushing her forward as warranted. 

Like most parents the first time you hear your child babble on the baby monitor you lay there and smile, rejoice and wonder what the heck they are saying.

When you go to their room in the morning and they greet you like you just missed the best dream ever your heart warms.

And if you are a normal parent by 7 pm you just wish they would stop talking. When you tire of trying to decipher what they are trying to tell you. Even as they crack you up.

I live for these typical moments. The moments that most parents, to some extent, gets to witness. The babble, the random words and the expressions. Things five years ago I never imagined.

Even as my ears ring.

A special thank you to Boo’s numerous therapists for giving me these moments.

And yes, Boo is still wearing her Halloween pajamas. And yes, I know it is May. Don’t judge.  

Children’s Hospital Boston

Last year our family kicked off the NSTAR Walk For Children’s Hospital in Boston.

We have walked every year since Boo was discharged from the NICU. Last year, over 25 of our closest friends and family joined us.

We walk to thank everyone from the doctor to the nurse to the technician to the janitor how makes every visit as painless and comfortable as possible.We walk for the parents who are scared out of their souls that their child is in pain.  We walk for the children who cannot.

Boo in 2011 Walking across the finish line

I am asking everyone to join me this year in supporting the hospital that saved Boo’s life. Not once, not twice but every time.

If everyone who reads this post donates as little as $10 you will make an impact on a child’s life. Click here to donate

Please consider sharing via Twitter and Facebook.

I thank you. Boo thanks you. Her Brigade will be thinking of all of you when we walk together on June 8th.

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.

Will my child cause your favorite teacher to be laid off?

Last week there was an article in our local paper titled, “Special Education costs blamed for (school) layoffs“. Lucky for Boo this is not her school we are talking about. However it struck a chord. Why must we pit one against another?

Our town is small. We do not have many businesses therefore the tax burden rests on the property owners. Frequently we see battles pitting the school department against the municipal side of the budget. This is the first time, to my recollection that we are putting students (and their needs) against one another.

I am extraordinarily grateful that this article was not about our town. Yet I live with a fear that it will be soon and we should explore ways to avoid it at all costs.  

Probably because this is the first time I have had a child in the “special education” cohort of the school system.

Which is not quite true. My older daughter goes three mornings a week for extra help in math. She has gone to summer school for math assistance. This is the only subject she struggles in and the school (and tax payers) have supported her needs. I am sure it is for the care they show all students and also to increase the MCAS standing of the school. A quid pro quo, if you will.

Boo on the other hand is a different situation. Boo brings tremendous value to her classroom. Her classmates will grow to be more empathetic, understanding of another’s needs and more accepting of their peers. Inclusion means that while Boo is exposed to peers for advancement while she advances their sense of community. 

But she is a drain on the school system. Boo receives physical, occupational and speech therapy from the school system (which in my opinion should be the responsibility of our insurance company to pay). She has a dedicated 1:1 therapist that is with her during the school day. This is for Boo’s safety (she wanders) and to make sure she can participate in class activities. That is, after all, the purpose of inclusion: to have Boo participate. Without the aide she simply cannot. 

Due to the layoffs, that other school system has modified some 1:1 care. Now a therapist will have 2 (or more) children under their responsibility. Let me explain why that is an impossible task to give that staff member. Logistically it is difficult. If you take your two children to the playground you know they will not leave. If a therapist takes Boo and her other charge, she cannot have Boo on the slide and the other child on the swing. How can she make sure both are safe? What if one has to use the bathroom? 

Education-wise it is still ill-advised. The therapist sits at a table with Boo and reviews counting. If she has another charge, how can the children and the therapist concentrate and make sure the program is run correctly and with consistency? Just as a teacher with 30 students in a class cannot make sure every child understands the Vietnam War, a special needs therapist cannot split their attention equally with more than one child and be confident they are getting the most out of the child. Having another child is a distraction for all.

But who should pay? That is really the question and you are probably not going to like my answer.

I believe the parent should pay for some of the care and education. It is our child and our responsibility. However we cannot. We simply do not have the money to pay. Just as the town budget is stretched a parent of a special needs child is under a financial burden unlike no other.  Our medical bills are higher, we pay out of pocket for supplemental insurance and at age 5 we are still purchasing diapers, wipes and pull-ups. Due to the amount of physician and therapy appointments we also cannot work 40 hour work-weeks. A family with a special needs child budgets in ways you never imagined. It is constricting and inventive.

Here is where I will again anger many. I also think that the tax payers should not have to pay for music, sports, clubs or electives. English, foreign language, history, math, science? Yes. That is education. But electives, including music and art, should be the responsibility of the parent to pay. Those electives are also a drain on the school system. There are pensions, salaries and healthcare costs associated with those staff members just as the special education staff. 

There are a lot more students taking electives than using the special education department. 

I am not sure of the answer. I do believe that we should pay a portion of Boo’s care. I firmly believe that our insurance company should have to pay for her therapies that happen in school, including her ABA therapies. I think some sliding scale should be in place to take some portion of the expense off the community.

However, if I am going to pay privately for Boo’s public education than I believe I should also have to pay for my older daughter’s music instruction.  

I’m old

A warning to anyone under 30-ish and/or childless, this post probably isn’t for you. It contains a lot of truth but will probably make you either jealous or want to punch me in the throat for crushing your dreams. But here are some truisms that you just don’t get until you are on the dark side of 30 with children. Or (insert gasp) older with children.

1. Staying up past 10pm is an accomplishment not a right.
2. When your child comes home and tells you some one was mean to them you remember when you were not so nice and wish you could do a Back to the Future and kick your own ass. See, if you are 30-ish you have no idea what that means.
3. You will give the last Oreo to your child, but not your spouse.
4. At some point you will stop thinking you can lose those last five pounds and instead look at that C-section scar as a badge of courage.
5. Although you want to smack the childless co-worker who says she is “so tired” and “didn’t sleep” all night you won’t. But only because you are too tired to lift your arms.
6. Sometimes you wish life was a Jimmy Buffett song and could just change your Latitude.
7. While you will always love your children you do not always like them.
8. You don’t care if you just insulted childless couples by saying you sometimes don’t really like your children.
9. Although you love your parents, you will wish they remembered what it was like to have children NOT grandchildren when they go shopping.
10. You wouldn’t change one minute, one moment of heartache, one tear in exchange for the hug that just won’t stop. Even when your child is on the dark side of 30.

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.

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.

Would you CARE?

It’s the last day of the 31 for 21 Challenge. I didn’t really make the goal of blogging everyday. However I was beyond happy to participate. As this is the last day I was thinking about Robert Saylor. How this young man with Down Syndrome lost his life because those who are there to protect were not trained to work with those whom have special needs.

Because while you might be aware of Down Syndrome you might not really understand it.

Then last week I read an article about the C.A.R.E. program. C.A.R.E. stands for Children and Residents Encounter program. It is the brainchild of the Colerain, OH police department. To my understanding, this program is designed to educate emergency personnel to those within their community with special needs. Be it Alzheimer’s, autism, mental health issues or behavioral issues.

Colerain has an estimated 1 out of every 150 residents on the autism spectrum. Chances are pretty great that at one point the emergency personnel will come into contact with a person who has special needs.

C.A.R.E. is a program where the family gives the emergency personnel information regarding the child’s (or adult) health and mental issues. The parent provides detailed information: are they on a monitor, do they have anger issues, what medication are they on, do they elope, what if anything do the police need to know if they are responding to your home or anyplace in town where that person might be in need of assistance.

Just think, if the police had known about Robert he might have lived. They would have been aware of his triggers, known he had Down Syndrome and been trained to deal with a person who has diminished capacity.

Yes, apologies to all the parents I just offended, but our children have diminished capacity and do not understand that  their behavior has unintended consequences. Sadly, neither are the first responders always educated.

One argument against C.A.R.E. is that we are giving up our children’s privacy. Do you really want your neighbor who listens to the police scanner (my MIL) know that your child is suffering from (insert your child’s diagnosis here).  Heck, I do it everyday here on this blog! But I see their point. Some parents are not “out” they don’t want the neighborhood to know that their child is autistic or bipolar or clinically depressed.

But in an emergency does privacy matter? If your child has suicidal tendencies wouldn’t you want the first responders to know? If your child is prone to throwing lamps in anger wouldn’t you want the first responders not to respond with force but with patience and kindness? If you child is deaf and does not hear the police say stop as they run in fear would you like them not to use force?

If you were Robert’s mom wouldn’t you have wanted the police to know that her child didn’t understand why he couldn’t just rewatch the movie? While I have never met Ms. Saylor I can imagine her anguish.

Upon learning about the C.A.R.E. program, I reached out to our local police and fire departments. I asked them about signing onto the program, or a similar idea. I explained how the Ohio police department minimized training costs and related expenses. They replied that this was one of their long-term goals.

Which I appreciate.

But I want more. I don’t want a goal I want a program. I want our police and fire to have a card on Boo. I want them to know her name, what she looks like and how to react should they encounter her during one of her eloping episodes.

Screw her privacy. Her life is more important.

To be preachy, so should your child’s. Forget their privacy or your embarrassment. Contact your local police and fire departments. Tell them about C.A.R.E. or another program that will protect everyone. If that doesn’t work, tell them about your child! Tell them you have a child in your home that has special needs and they NEED to have this information.

Think of Izzy and her mom, whom the area hospital knew and still couldn’t protect.

Think of your child and their temper tantrums. When they are out of control and you are doing the best you can but the neighbors call the cops to protect you.

Think of your child who climbs or wanders and the new neighbors do not understand that your daughter is autistic and does not realize they cannot swim in any pool they come across.

Think of your son who is manic depressive and might encounter emergency personnel during one of his psychotic breaks.

Truthfully, the neighbors and police and EMS are not wrong. When faced with an out of control person or a child that looks much older than they are developmentally, they have no other thought than to protect those in control. They will try to reason or restrain with compassion. But in fear for themselves and those around them they will also respond with force.

It is not anyone’s fault. Not your neighbor’s for calling the police, not the police for seeing an out of control person and trying to restrain them, not your child’s fault for having a disability and not your fault either. Ultimately we need to protect our children and those they come into contact. I think C.A.R.E. is a great start.

Think of Robert and know that could be your child.

Screw privacy and think protection.
 In Robert’s Memory and in Respect for a mother’s grief I end this month of Down Syndrome awareness in their honor.

October Thanks

This week it is (again) easy to give THANKS. That is capital letter thanks, mind you. It’s been a very busy week let alone weekend.

10. My friend R answered my call, well text, this week. David was supposed to race with me this weekend. However he had some excuse called work. I have never raced alone so I asked R to go with me. And she did! We had a great day together.

9. “R” accomplished her goal of finishing a 5K in under 30 minutes! She wasn’t expecting to do it today.  Woo Hoo I was so glad to see her smile as she crossed that finish line. ‘

8. After the race I convinced “R” to go to attended the free after race celebration. We had a great hour just chatting.

7. The family was a plus 4 to another friend’s Halloween party invitation. It was a costume party and I am not quite sure who had more fun, the adults or the children.

6. We all wore costumes, even Boo. She was the child in PJ’s who should have been in bed. Also known as the one kid whose mother was smart enough not to attempt a costume that she would have to put into a car seat.

5. Boo showed everyone how to twerk.

(apologies, still haven’t figured out how to import videos from my phone. To see Boo twerking visit her Facebook page!)

4. We had a great time at Allie’s school Halloween celebration. 

3. My mother-in-law watched the girls so R and I could do the 5k. 

2. Crafty Auntie K did the pumpkin carving with Allie and Boo so I didn’t have to ruin another Halloween.

1. The true heroes of the world showed us the true meaning of bravery and what it means to ROAR. Thanks to the children, parents and staff of Dartmouth-Hitchcock Hospital Medical Center in Lebanon, NH for making my week.

Now it’s your turn. Tell me what you are thankful for this week.  After looking at those kids out rock Katy Perry I am sure you can think of just one thing this week to be thankful!

Ten Things of Thankful

A wrap up of the 4th

The 4th of July dawned bright and early for us. Unbeknownst to David I signed us up for another almost-5k (not quite 3mi but I am fine with that). My goal is to continue having accountability. If we sign up for a race we will have to train and therefore run. Okay, he won’t have to train. That man just shows up and out paces me.

The reason he lives is he doesn’t lord it over me. Instead he has been really good at not letting me slow to a walk. The fact that he left the race course to hose down at a friends house and then sprinted to join me, then ran past me to talk to another friend has nothing to do with my envy.

The race was much easier without pushing Boo. She and Allie hung with Grammie while we ran. I think they had more fun. You see there is a peacock that has overtaken my MIL’s neighborhood. And “Petey” has taken roost in her front yard. In the mind of only a grandmother, she brought the girls outside to see it. I am not talking about from afar either…

I’m glad I was at the race. I’m beyond ecstatic that that Boo didn’t escape with the bird. And overjoyed that the bird didn’t eat them. Are peacocks carnivores?

After the hot and sweaty race we picked up the girls and my MIL (leaving “Petey” at home) to attend the town parade. Boo did really well, waving and saying hello to all the floats. As long as the antique cars didn’t honk their horns she was happy until….

The muster. Every year our town’s fire fighters put on a muster for the kids. They fill the school field with foam and allow them to slip and slide all over the place. The kids have an absolute blast. To show you “the foam” that the families look forward to…


 The kids line up to be under the foam cup.

Allie showing that she is her daddy’s daughter in the thick of things!

It doesn’t matter how old you are from toddlers to teens to seniors…everyone enters the foam.

 To every parent’s joy the firefighters also set up a wash off station.

But these photos are from last year. Because this year, Boo was terrified of the foam. She refused to leave my arms. She was wrapped tighter than a boa constrictor. Last year:

This year?  In truth, I was saddened by this slight regression. That we have no photos, that she didn’t enjoy herself. That Allie can’t play with her little sister as the other kids were enjoying the day. Yet once the foam was gone and the hoses were put away, Boo was the happy little girl who loves to give hugs. Of course, the teens had to dry off first. But they were all so patient with her, chasing her around the now clean field.

When I think of all the strides Boo has made in the past year, the fact that I have no photos of this year’s foam is bearable. This Independence Day Boo is still growing. Yes, there are regressions. Especially being out of school.

Yet Boo still amazes us. She is now independent in taking her shoes off. She can unzip her lunchbox. She can drink from a cup and can find Austin & Allie on her IPAD. Boo is engaged in her life.  Once the field was back in her comfort level, Boo was interactive with the children.  She tried to climb on the fire truck. Boo was there in the moment. 

We might struggle finding out why she is frustrated or what she is feeling or why she shuts down. But in two cases we know this for sure Boo has clearly told us what she doesn’t like. Snow and Foam.