How often do you look at your child’s IEP? I know I used to look at it right before an IEP meeting, then I would review it afterwards, sign and move on. I learned my lessons over the years.
For those who are just entering the IEP there are a few facts to remember. Continue reading
The other day a friend posted their status:
“When you arrive for an IEP meeting, and there is a literal car fire in the school parking lot”.
From the commentators on the status, you could pick out the ones who had been thru an IEP meeting and ones who sent their kid to the typical kindergarten.
My response: That’s one way to get your point across.
Another response: We usually just start with introductions. But a car fire sure sounds interesting.
Normal parent: WOW.
Bet you can pick out which was the parent who never went to an IEP. Continue reading
You know when you think something is working and by all appearances it is, then you let someone else test your “thing” and it malfunctions? You have to go back to the drawing board and you are frustrated because you were so sure that your “thing” was working perfectly.
That my friends is life with Bridget. Continue reading
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
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
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
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….
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.
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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.
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| 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.
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.
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.
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| 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.
What’s that? Allie replied.
(Un)Diagnosed and still okay 