Category Archives: IEP

Happy Day!

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.

I’ve written before about Boo’s wandering. It started about as soon as she came off the walker. If she is outside you blink and she has eloped. It is beyond scary to know your child will wander off and not realize she is unsafe. I even had a bright idea and e-mailed NIKE about putting a chip in children’s shoes.

They refuse, on principal, to take unsolicited advice.

So I remained scared and worried. A lot of my fear is due to Boo’s lack of verbal skills. Then a police officer friend told us about Safety Net by LoJack.

Let me state right here, I am not being paid nor has LoJack asked me for any type of endorsement. They have no idea I am even writing this post.

Safety Net is a bracelet Boo wears. It has a rocking purple strap and about the size of a watch. Okay, it is a tad big on her….but she is a petite little thing! She wears the bracelet 24/7. If she wanders we alert 911 and provide her name. Our local department has her signal ID. If we travel we let LoJack know our destination and they will alert authorities that we will be in there area.

Unlike cell phone and GPS signals, LoJack uses a radio transmitter that can be used in any condition and locale. Since we like the mountains, we were relieved. Her bracelet is waterproof. She can use it in the bath, the pool and the ocean. And if we can convince her the sand.


It is expensive, $400 for the first year. We asked our families to contribute. We let them know what we were doing and asked that instead of getting her a birthday/Christmas present this year they take whatever money they normally would have spent and put it towards her safety.

All responded with generosity. They understand that Boo doesn’t “play” and doesn’t need material things…but she does need to remain safe. While her bracelet will not stop her from eloping, it will help us locate her with a great chance of finding her alive.

The system arrived within a day. We put it on Boo. She did NOT like us putting it on. But now that it is securely on, she has been showing off her “bracelet” to everyone she comes into contact with. She has slept, bathed, done crafts (with grandma I was banned by Abby) and gone to school with it.



She has been wearing the “bracelet” about a week. She has asked for it to be “off” once and a while but for the most part has realized it is staying put! 

If you see Boo around town make sure you ask her to show her new rocking accessory.
 
 

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.

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!


Ten Things of Thankful

Listen

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

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…. 

Workshops…not the end of the world!

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.