Category Archives: IEP

From this day forward…

When you get married you promise to be with your spouse from this day forward for the rest of your lives.  David and I have come to the realization that since Bridget’s birth she will be with us from that day forward. I know, you always have your children with you. When you have a child with a disability that statement has a different connotation.

The weird part is, when Bridget was smaller and at her most fragile she was actually more portable. As long as she was in a carrier, she was content. Now that she is older, she is less likely to pass as a precocious toddler. Now when I carry her and someone asks her age I receive that look. The look that you are a bad parent babying your first grader. Until you talk with Bridget, unless you know her, you would not immediately know she was not your typical seven year-old.  Continue reading

Vision

The Individualized Education Plan (IEP)—the meeting every parent looks forward to attending.  Um, not exactly. I dread the IEP meeting; I am never sure what I should be asking versus what I need to be fighting for Bridget to receive.  The IEP process is so involved. From the beginning of the process I get tripped up.  It starts with what seems to be an innocent question: my input for our vision statement. Do you realize how difficult it is to come up with a vision statement for your child’s education? Try the exercise.  Think to yourself:  the vision statement for my child’s education experience it would include…

I’m hearing crickets. Continue reading

How to make IEP process suck less

Any special needs parent will tell you that one of the most difficult things to navigate in their child’s life is the IEP. For those who do not know the Individualized Education Plan (IEP) is a mandated program through the federal government. Unlike doctors, treatments or therapies you might not prescribe to the IEP is something you cannot get out of if you are in the public school system and your child has learning difficulties. Continue reading

Sometimes

**Warning Rant Ahead**


Some times….I hate this life. I hate that as much as I love Abby I fear those teenage years. I hate that one day she will go through a period of her life where we will not understand one another.

But I accept that. 

I will not effing accept is that I HATE in capital and bold letters that doctors will never show concern for Bridget. That she has to have some mysterious swelling that one doctor tells me to call another doctor about who tells me to call yet another specialist about. That when I finally get her into the vascular clinic she is seen by one doctor and fourteen medical students/fellows and I am told that her vasomotor instability is not that big of a deal. “A LOT” of kids have something “like” this phenomenon and not to worry. When asked if I should be worried that it could be happening while she sleeps and is it fatal, I was told no. I told them they would be the first person I called should they be wrong.

No parent (and I am not looking for a poor Kerri thing here) should be told that. That without any testing, with a brief exam that their child is fine. Parents should not be made to feel like we are bothering doctors. 

We are the reason they can afford their student loans, vacation homes and alimony bills. 


Bridget has SIXTEEN different specialists. Why the freaking hell do I have to call them? They are all at the same flipping hospital. Can they not call one another and chat, is that too much to ask?

And why, dear God why, do they refer to one another and then disagree? Why must I always be the advocate, the voice of reason and the fingers of Google. Why do I have to always be vigilant? The one who e-mails and calls cardiology, genetics, rhuematology, neurology, GI, neuro-urology (yes, there is such a thing), pulmonology? Why do they think that because it is NOT life threatening it doesn’t impact her life?

Not that she “suffers”. There are children with disease, cancer and deformities that have a life so much more difficult. I completely get how lucky we are and how selfish I am for getting pissy that she has to endure things that really are not that bad in the scheme of things.  Recently she got another quirk, not an ailment or symptom really. But just one more thing to add to her Booness. I said she already had 15 why add one more. 

This was not the life I expected.

To constantly be second-guessing myself. And the Harvard Graduates.

To wonder if I push too hard or not enough.

To cry because children are supposed to be beings of joy before they are teenagers.

To be at my wits end because although I love Bridget for who she is I hate the fact that I don’t know why she is the way she is. That we need to know the why so we can give her the best life she deserves to live. Just like her sister.

To have to physically hold my child down for two hours while she screams during a test of her bladder function. 

Because as much as I love my child sometimes I resent that she isn’t perfect.  That she isn’t easy. That she, with all her advances, cannot keep up with where life has placed us.

Because I am not capable of being the perfect mom that can handle everything.

Because sometimes I cannot even handle my beautiful, awesome, perfect daughter.


And I am sorry. Because sometimes I effing resent it. I fucking hate that this is our life. A life where we know our beautiful daughter will always struggle. That our lives are scheduled around school, therapies, doctors appointments and not play dates, gymnastics and ballet. 

We will struggle with Boo. For freaking ever. This will not end. That although our children are always our children Bridget will forever be our child and not the mother of our grandchildren.

That I look into Boo’s eyes and see how beautiful she is yet think if only….


***End Rant***


The Land that the Internet Forgot

You might have noticed I’ve been, ahem, quiet the past week or so. I had a very good reason. I visited a place where the internet hasn’t been invented yet. It’s the best vacation ever. 
Every year we take the girls (and Bailey) to the mountains of Vermont with 20 or so friends. It was great. It was filled with the sound of laughter. And because I am not an idiot, it was also filled with the sound of Sofia the First on Boo’s IPAD. There wasn’t internet but thank the Good Lord there was power.

And bathrooms. And showers. 

There was also seven days filled with friends, freedom for Abby, river rafting, hiking and just getting away from it all. This was our morning view. As in roll over, open eyes and see paradise.

There was also a husband and nephew who decided to go kayaking in the very LATE afternoon. Of course not having any cell service meant no one could check in and let me know that the river was a tad longer than expected and they would not be meeting us at the designated spot/time. Thankfully I did not need to find service and call David’s sister to inform her that I lost her favorite brother and son (who may or may not be her favorite depending on the day). Both boys were returned before the search party was created with hilarious stories of their adventure.

Bailey: Bye Dad, hope to maybe see you again

When you camp with 20 of your closest friends and there is only one child Abby’s age who happens to be her favorite friend, you make her summer. She and her friend were allowed to travel between camper #1 through camper #20 as long as they checked in. We heard, as she ran past: going to Mrs. George, going to Mrs. Black, Going to E’s Nana, Going to HERE. For one week Abby gets to have fun, not have to include her sister and experience being a kid of the 70’s when you were outside all day and every person in the neighborhood was responsible for you. No TV, no electronics just fresh air, rafting, playing in the river and being a kid. 


Boo is included not because of an IEP but because she is adored. There was also ice cream, fireworks, the best community dinners and enough laughter to wish next year could come faster than Christmas.


We hiked a waterfall. Well, we hiked. Boo had to be carried for 5 of the 6 miles as the terrain was a little unsteady for her. The last mile home she hit the flat ground running and I wished she would let me carry her again.


The reason, though, that this is the vacation I look forward to every year is that this is the one week where we are together. No distractions. No fire radio going off at all hours of the night pulling David away from his family. No Words with Friends pulling me away (okay, his is more important). There was no fighting over bedtimes, eat your dinner or practice your flute struggles. There were no therapy appointments, doctor appointments or similar tortures for Boo. 

For this one week we are a family off the grid surrounded by our friends enjoying the same experience.We are, for six too short days, a normal family. 

It was so hard to come home. It was harder to go back to work and stop being mom for 40 hours a week. I miss my girls. The minute we came home I found myself on e-mail, David turned up the fire radio, Abby had to be reminded to practice her flute and Boo returned to her appointments. 

Of course we have to return to the real world. As difficult as it is some days. Our vacation week reminded me that we have to remember to unplug less often and plug into our family more.




Throw back Thursday–On Display

Welcome to my version of Throw-Back Thursday, blog style. I’m taking Thursdays to revisit some older posts.  I hope you enjoy the trip back in time.



(Originally posted on 30-JUL-2012)
Right now I am reading a great book with an odd title. It is called, My Baby Rides the Short Bus: The Unabashedly Human Experience of Raising Kidswith Disabilities by Yantra Bertelli, Jennifer Silverman and Sarah Talbot .  It is a collection of memories by moms and dads who have done it. Lived the life as a parent of a special needs child.

In the book there is an offering called Glass Houses by Sarah Talbot. She tells of how instead of institutionalizing her son, they basically turned their home into an institution. The State they live in actually agreed that it was less expensive AND more healthy to raise their son at home and bring the services (including aides) to him. However Caleb is not their only child. So by turning their home into the institution they also (for lack of a better word) institutionalized the entire family.

Not only did the parents lose any hope of privacy, so did the other children.

It made me think back to when Boo had Early Intervention coming to the home 3-4 times a week. And how (especially in the beginning) I would “company clean” the house the hour before they arrived. You know what I mean, when you know your MIL is coming to visit so you make sure if she “unexpectedly” opens a closet nothing will fall on her head. You know the stuff that is generally on the floor/counter space? I can even recall telling my husband once not to use the bathroom! And forget the semi-annual evaluations when we not only had our regular EI Specialist but 3-4 more people coming to (in my mind) inspect us while they evaluated Boo.

The day after Boo’s last EI appointment was the last time my kitchen counter was spotless.

But reading Glass Houses brought the memories back and made me think of how under the spotlight we are. Even though EI is over (thank goodness!), we are still under the “view” of the various therapists, teachers and aides. I am sure parents of ‘normal’ children probably have moments of second-guessing themselves. However I bet it doesn’t happen everyday at therapy or when you talk to your child’s aide and realize that you forgot to give the child a bath that morning because you had both been up all night. Let’s face it, sometimes Boo is lucky to have on matching socks!

When we got drafted (since I know I signed up for the child who slept at night, not the one who wouldn’t for going on 4 years) into this life we never expected that on top of everything else we would be opening our lives to constant surveillance.

We have to worry that Boo will bite someone other than herself. We have to worry that when she goes to school, the doctor or a million therapy appointments they will not believe the bump on her head came from herself and not us. We worry about going to the ER that they will think we are a hypochondriac or worse. We worry about that woman in the parking lot who doesn’t understand that we are not hurting our child as we force them into the car seat.


When Boo was in the NICU I worried A LOT. Over the years I have worried more. But back in the NICU I never imagined that when Boo entered our life we would be opening our lives (and Allies) to life on display.

I better make sure Boo’s socks match. 

Throw back Thursday–Inclusion

Welcome to my version of Throw-Back Thursday, blog style. I’m taking Thursdays to revisit some older posts.  I hope you enjoy the trip back in time.


TBT Blog Style


(Originally posted 18-JUL-2012)

Allie is taking some summer help in math at a local school. This morning when I dropped Allie off she was telling me about the kids in her class. Some were from her current class and others she didn’t know. Allie said that there was only one other girl, a bunch of boys and one weird boy.

Weird boy, I asked, do you mean the boy with Down syndrome?

            What’s that? Allie replied.

Well he is special needs, like Boo, I explained


Oh, is that why he has a teacher just for him in the class? (Yup) That makes sense now. I thought there was something different but couldn’t figure it out. Why didn’t they tell me so I could help him?


This conversation floored me on many levels. First, Allie has intuitively known that there is something special about Boo and has accepted her without conditions. I automatically assumed that she would recognize and accept it in another child. Second, Allie attends enough of Boo’s therapy appointments to see other children like this boy. I was completely astounded that she even had to ask, or worse in her mind label this boy as “weird”.


Allie has been a staunch defender of Boo. She would never let one of her friends use that term with her sister, so why did she do it with a boy she just met? Have I failed in some way in to prepare and nurture her to accept all others like she does Boo?


Of course, I asked Allie! Not that specifically, but why she did she not understand that this boy was special. She thought because he was so big and not little like Boo he was just a boy.   I asked (just to make sure) that she hadn’t made fun of this boy. She was quick to say no, but that she wished that the teacher had told her because the other boys in the class did. Allie was so cute, telling me that she would make sure it didn’t happen again! We had a long talk about Boo and how would Allie feel if one of her classmates called Boo “weird”.


But it made me think, is inclusion working? Are the teachers and other parents explaining to their children that not all children can run, read, speak like others. Whose responsibility is it really? Mine, in some way because while I can educate/prepare Allie and she can then teach her peers. But neither Allie, her dad or I can go into Boo’s class and wake up the other children/parents. I can only be responsible for the children who interact with Boo in my presence.


Is it the teacher’s responsibility? Certainty, but how can they do this without embarrassing (not the right word, but hopefully you get my point!) the child in question. Allie thought the teacher should have let the kids know.


I think the biggest obstacle is that the other parents are not on the playground or in the classroom with their children. So they might not even be aware, like me, that their child may be prejudging some one. Think about it, if you do not have a special child would you think to educate your ‘typical’ child about a child with Downs, CP, and autism or like Boo one who is undiagnosed? I will admit that before Boo I cannot honestly say I would have said something to Allie until she asked/made a comment in my presence.


I think as children get older they may become more aware (and yes, mean). But at Allie’s age it is just a sense of innocence where they don’t really notice differences in others until the difference is glaringly obvious.


Boo is in an integrated preschool with a not so equal ratio of special/typical kiddos. Even there I notice that some parents look at us askew when Boo is not participating like their ‘typical’ kid in the class. Once a child asked their mom what was wrong with Boo and the mother, instead of educating, told the child to ‘hush’.


So I don’t know what the answer is, if integration is worth it or how to educate the world at large that Boo just has a different sense of typical.

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.  

No interest

I have no interest in being a person who wallows. I do not want to be a blog that focuses on one theme. I think of this blog as my therapy. If I am lucky it is your therapy too because you realize you are not alone.

Whether your child is healthy and ornery like Abby or challenging like Boo or your house has a crazy puppy who is equal parts loving and destroying your house. I want all to feel welcome and to feel a connection.
Then there are days like today. The day that started out promising, too rainy to run. Waking up early to realize that the morning goes smoothly without incident. You knew it was too good to last.

It started innocently enough. With your daughter telling you that her pants had a whole in the, well, crotch yesterday. A boy on the bus noticed and it ended up into a discussion about who had an elephant trunk and who was flat.

Yeah. I went there. 

You tell the boys mom. Because you want to make sure that 1. she knows your child typically does not go into school with a hole in her crotch (unless she is Kristi) and 2. that you made sure there was no inappropriate show & tell on the bus that would get either kid suspended from elementary school. The other mom kind of reacted differently than you, had ‘the talk’ with her child. You felt bad because you saw and admitted to the inappropriate humor to the situation. The fact that Kristi saw the humor and said HEY RIGHT A BLOG POST ABOUT IT made you feel better.

You think that is the most you would have to deal with in a day. You think hey I handled this maturely. I answered my daughter’s questions in a way that she understood and didn’t feel embarrassed about. I promised not to tell her dad. Thank GOD he doesn’t read the blog since I never promised her I wouldn’t tell the world. 

Then the other shoe drops. Boo happens. She has a meltdown at school and at home. Abby tries to compensate by being the good girl. She tries to placate Boo but I stop her because I do not want to reward Boo’s behavior.

I realize that I am wallowing. I am stuck in this mantra that Boo is sucking the life out of us. That as awesome as she is, she is draining.  That I suck at this. That I cannot stop wondering where Spring is. When life will get easier.

When Boo will not demand so much energy (probably not going to happen). That I will not have to demand a doctor pay attention.

That I will not think life would be easier with the Abby issues.

I never intended to resent Boo. But sometimes I do.  Sometimes I suck at this whole “special” parenting thing.

Something else I never expected to do. I never had an interest in being a parent, let alone a parent of a child with challenges. Sometimes it is great. Sometimes it sucks. Most times it is not the life I intended.

But it is my life and I am doing the best I can, even when it seems I’m not.

Finish the Sentence Friday

Paging Dr. House!

Recently I took Boo for a follow-up with neurology. The best part of the visit was when Boo hit the ALARM button in the hospital elevator. In a crowded hospital elevator. The day would have to get better, yes? We were only going for a routine follow-up.

Maybe with other children. But nothing with Boo is as easy as it appears.


I adore her neurologist. I trust her more than any other physician Boo sees. We had a long talk about the autism diagnosis and what it means for Boo. She asked about Boo’s chronic low blood pressure and is surprised that no one is too concerned about it. She asked about Boo’s chronic color changes and again showed surprise that no one is too concerned. That although her Raynaud’s is manageable it is odd that it presents so young and without any rhyme or reason.

I told her about Boo’s newest development: intermittent swelling. That her wrists and hands would swell for no reason. I had taken her to the general pediatrician but by the time I had made it his office she was no longer swelling. As the neuro examined Boo she agreed that one of her hands appeared swollen and asked about her legs. Um…she is always in jeans and sneakers. Honestly (my bad) I never checked. I did say that her legs do get “tight” but we have been stretching them.

Disrobing Boo her neuro said: She isn’t tight she is swollen. Very swollen. But it doesn’t seem to bother her. (That should be Boo’s theme song)

So a parent would think okay what do we do about this?

Her response: call some one else. Okay, not really. But she told me to follow-up with two of Boo’s other specialists. That this wasn’t really her field.

Deep breath. I called Boo’s rheumatologist and was told it (based on a phone conversation) that this swelling does not appear to be rheumatological (is that a word? If not I just made it up like undiagnosed) in nature to “give it a couple of weeks” and then go back to our general pediatrician.

I called Boo’s cardiologist and left a message. No return call yet, they must not think it is anything to be concerned about.

But I am. And I am frustrated. How can one little girl have so many abnormalities. Isn’t one enough? Does she really need 15? I’m thinking she is getting greedy. 

So here is what I am looking for Dr. House. I am looking for someone with a medical degree to give a crap. I want them to look over Boo’s entire history. I want her examined from head to toe and not say they don’t know. We are okay with being undiagnosed. We are not okay with no one exploring why.