Wednesday, September 4, 2013
An Open Letter to Parents
An Open Letter to Parents:
Parenting is hard. There are lots of demands on our time and attention, lots of expectations and judgement, and pressure to be perfect. I try not to judge too harshly because each day is not all of our best days. There is a constant need to teach and re-teach and remind and re-remind. And some times you have to pick your battles with your little guys.
With that said, I went to the Children's Museum today, and have decided we might never return. It is not because the kids don't like it; they do. It is not because the staff isn't nice; they are. It is not because it is expensive; it is. It is because of you my fellow parents.
Last visit, we left because it was crazy in the downstairs toddler area. Children we running, moving toys from one area to another area, there were parents standing around talking, but not supervising. It came to a head when I was hit by play food being thrown out of the birds nest by children about 9 who were in the 3 and under area. I told them in no uncertain terms, that was not acceptable to be throwing food, I had been hit, and they were not young enough to be in that area. They stopped and left, but there were no parents around.
Today, we were in the beehive ball room. My kids were playing nicely. I had to immediately remind Kyle of his skills from therapy and skills class---don't touch others, give them space, and wait your turn. He did. Then I see a mother sitting on a bench next to me on Pinterest. She is not watching her toddler climbing the peg wall where you can sort balls. When her child ask her to see her accomplishment (getting to the top of the 6 foot wall), she looks up, acknowledges and goes back to her phone. When Kyle tries to climb it, I immediately stop him and explain (the mother can hear me) that it was not designed for that. When Kyle tries to instruct the other girl, I also explain she has a mother and it is not our job to tell her what to do.
Shortly after, we move on. In the first area, construction, Aiden finds food from the marketplace and immediately wants to take it back to the proper place. We put the basket of peaches away in the marketplace--across the whole toddler area. After we are walking through the room, we find an abandoned loaded grocery cart, not in the right exhibit. It has mail, which Kyle has been looking for so he can deliver some around the toddler area. As he is looking to deliver it, an older child, runs up to him, and physically tries to rip the mail out of his hand. I let him know, that it was Kyle's turn. He backed off. Where is the parent????
Aiden spends the next 20 minutes rounding up play food from the marketplace and farm area around the museum. He wants to sort it all and put it away. We do. In the car area, Kyle wants Aiden and I to get in the back of the truck. We can't. A child has filled it with play food from another area and left it.
We moved upstairs to check out the helicopter. While the boys are in the front seats, 10-15 children with a parent come from the party room. They are running. A child comes up to Kyle and says, "I want to sit there." I remind him, while a parent is standing two feet away, that it is Kyle's turn. Parent says nothing. Another child about 9, pushes his way onto Kyle's seat. I asked him to back off and give Kyle his turn. Parent says nothing. Finally, as 4 children are pushing around Kyle and reaching in his space, I tell Kyle we should just go, it is a losing battle and not worth the fight. Parent says nothing.
Later, a toddler empties a shopping cart full of play food into the water at the water table. Parent doesn't notice from her bench. Aiden starts to get really upset, and helps me pull it from the water and put it away in the right exhibit. Aiden spent the rest of the time at the museum helping the staff put away marketplace food they had rounded up from all around the museum. He got a prize for helping.
Parents, take responsibility for your children. You need to supervise them. You need to remind them to share, teach them about personal space, and make sure they are following common courtesy. If you are sitting next to a sign that says, "no food or drink in the museum," don't be feeding your toddler right there. If your child makes a mess in a common space with shared toys, clean it up. Set a good example. If your child is throwing toys, stop them. If they are splashing others at the water table, instruct them not to.
I am mortified when Kyle chases other kids, yelling for their toys, grabs them out of their hands, does not respect boundaries, and is in general not a good citizen. I quickly call him over, correct him, have him apologize, or do it myself particularly if a parent is around. I work hard with Kyle, as he struggles socially. We practice at home. We role play. We go over expectations before entering a social situation. We leave if he can't use his skills. We talk about social interactions in therapy. We remind, remind, remind, remind, and remind some more. It is hard work. But I do not want to have child that struggles to make friends. I do not want a child unaware of good behavior.
Do you as other parents, not want the same for your child? Can we not be united in our desire to raise good citizens? These skills, sharing, kind words, and respect are not intrinsic behaviors. You need to teach them and it takes years. You signed on when you had a child; now hold up your end of the bargain.
Thank you,
Concerned Parent Tying Her Best, and Startled By the Lack of Parenting Around Her When in Public
Thursday, August 22, 2013
Car Payment
Sorry, if this is making you sick, but I just found it when I went to pick an Aiden picture. It's from his birthday in July. I have to admit, that this is my favorite stage of Aiden so far. He is sweet, funny, adventurous and he is just happy.
Conversation yesterday while walking through a parking lot to our van.
Aiden: That's not my car. That's not my car. Where's my car?
Me: Here's our car.
Aiden: My car!!! My car!!!
Me: Is this your car?
Aiden: Yes!!
Me: Are you going to pay for your car?
Aiden: Yes!!
Me: (while buckling him into his carseat) Are you sure you are going to pay the car payment?
Aiden: Yes!!
Evan: It is over $300 a month. Are you going to give us money to pay that?
Aiden: Yes!!
Me: Okay, Aiden I need your money to pay the car payment then.
Aiden: Daddy, can I have some money???
Today, while getting into the van after the zoo.
Me: Aiden are you going to pay for the van?
Aiden: Yes!!
Evan: Where is your money?
Aiden: In your pocket!!!
Thursday, August 1, 2013
Wednesday, June 5, 2013
Pyramids, Car Rides, Length of Days, and Weather in Just a Few Short Minutes
This starts in the middle of a conversation about pyramids, if you can move them, make the disappear, are they hard or soft, what they look like inside, and how we live in the desert like the pyramids do, but it is different and not the whole world is a desert.
K: Like it is a 2 day drive to California.
H: No, remember that was only 1 day.
K: It is a long day when you drive.
H: Yes, it makes for a long day.
K: Only Jesus can make the day shorter. He can make it longer too.
H: Yes, I guess.
K: It is because he has the power of God.
H: That is true.
K: Only God can change the weather.
H: True.
Thursday, April 25, 2013
Lego Zoo
We went to the zoo today, and some time between last Friday and today, they had installed Lego exhibits throughout the park. There were large signs explaining what we could do to help protect the animals represented by the Lego models, but we didn't read any of that :)
This is a tree frog, but with the protective glass and shade, I know it is hard to see, but you can see the boys' reflection in the bottom.
These are Lego monkeys.
This was a full sized polar bear made of Legos on a Lego iceberg.
Kyle's best friend, Ben and his little sister and mom, joined us today. Ben showed Kyle how to climb on top of the log in the otter habitat area.
Lego turtles
These pictures are probably in the coolest part of the Lego exhibits, they have a picture of an orangoutang and a gorilla made out of Legos with places for the kid's head to pop through. I really like 2D art done in Legos. The way they do shading and everything is extraordinary and the boys came back to this part of the zoo before we left they liked it so much.
I just wish I knew when the exhibits are going to be gone. And a normal zoo picture of Aiden with our friends.
It was a gorgeous day and a ton of fun to go with our friends.
Monday, April 15, 2013
The Pudge
The top one is Kyle 5 weeks ago, the bottom if Kyle today....it might be hard to tell, but we were told by our nutritionalist today that we have a new medical issue. Kyle is gaining too much weight!!! He gained 7 lbs in 5 weeks. He is now up to 43 lbs, and has to be reweighed in two weeks to make sure this trend doesn't continue. He was only supposed to gain 1-1.5 lbs in a month! Since we changed formulas he has just gained and gained. It is awesome.
There is some consideration that maybe he has more allergies/triggers than thought---so now on the new hypoallergenic formula---the diarrhea has stopped and he seems to be absorbing more nutrients. And we checked to make sure he wasn't retaining water--he isn't just growing! Maybe his new immuno suppressant drug is helping too.
It is great news. Although he is only filling out and growing like a Young, so his pants are too tight and way too long. Plus, the clothes that I thought would last us until June are too tight and everything else is in storage. Although, maybe he just needs some bigger clothes---but my sewing machine is in storage too and everything that fits his middle is way too long! The joys of having a big boy with little legs :)
I am somewhat nostalgic for my little baby; hefting him in and out of his car seat or onto the bed or carrying him anywhere is too difficult for me now. He is just so solid. He isn't little anymore. He is almost five. Can you believe it? So I am sad to lose my baby, but so grateful for some buffer weight and to know that he is doing better.
Wednesday, April 10, 2013
My Child
I have been told that I should apply for disability for Kyle by one of our "Team Kyle" specialists. It is daunting. I am told that 98% of people get denied the first time and my best bet is through a lawyer. I have a meeting about that tomorrow.
I have also started to research what I need to do to protect Kyle in school. It is a year away, which is good and so annoying at the same time. He is 12 days too young. But his mind....
I was reading some documents today on American Partnership for Eosinophilic Disorders, ya know since Kyle has an eosinophilic disorder and several other disorders/diseases/medical conditions :)
This was a piece of advice:
Check your emotions at the door. It can be frustrating to try and explain a confusing disorder to educators and people who help support your child all day. It is inevitable that you will be faced with difficult situations that generate feelings of anger, frustration, sadness, and isolation. However, it is absolutely critical to focus on the factual information available
[I failed at this today, I threatened to make a scene and/or make someone very uncomfortable if I was forced to come in for an appointment with the child psychiatrist, so he could make a med change. The administrator asked how that particular threatening behavior was working for me....I said, "Well! My son gets the care he needs!" And the psychiatrist that on policy does not do anything on the phone---you aren't even allowed to leave messages; he called me and it was a 3 minute conversation including new drug, dosing, side effects, and going over the address of my pharmacy. We will be looking for another provider.]
Engage with the school as though you are entering into a business transaction. There is an identified problem or need that must be addressed. The goal is to find a resolution that creates a win-win situation for the child and the district. Emotions do not have a place in most professional situations, and the same is true when dealing with the school system.
Then this is what (at a very basic level---if he has no other needs) needs to be addressed:
Aiden will need one too.
How am I going to do this?
I have also started to research what I need to do to protect Kyle in school. It is a year away, which is good and so annoying at the same time. He is 12 days too young. But his mind....
I was reading some documents today on American Partnership for Eosinophilic Disorders, ya know since Kyle has an eosinophilic disorder and several other disorders/diseases/medical conditions :)
This was a piece of advice:
Check your emotions at the door. It can be frustrating to try and explain a confusing disorder to educators and people who help support your child all day. It is inevitable that you will be faced with difficult situations that generate feelings of anger, frustration, sadness, and isolation. However, it is absolutely critical to focus on the factual information available
[I failed at this today, I threatened to make a scene and/or make someone very uncomfortable if I was forced to come in for an appointment with the child psychiatrist, so he could make a med change. The administrator asked how that particular threatening behavior was working for me....I said, "Well! My son gets the care he needs!" And the psychiatrist that on policy does not do anything on the phone---you aren't even allowed to leave messages; he called me and it was a 3 minute conversation including new drug, dosing, side effects, and going over the address of my pharmacy. We will be looking for another provider.]
Engage with the school as though you are entering into a business transaction. There is an identified problem or need that must be addressed. The goal is to find a resolution that creates a win-win situation for the child and the district. Emotions do not have a place in most professional situations, and the same is true when dealing with the school system.
Then this is what (at a very basic level---if he has no other needs) needs to be addressed:
Accommodations should be written to address the individual needs of the student. The following are examples of accommodations for a student with an eosinophilic gastrointestinal disorder in elementary school:
- Allergen interaction plan including medication (i.e., epinephrine/EpiPen®) storage location, administration, etc.
- Description of nutrient intake schedule
- Description of medication administration
- List of trained feeding tube administrators (FTA)
- Description of tasks to be performed by FTA
- Description of training for FTA
- Off-campus activities covered by FTA
- Designated locations where nutrition support (e.g., formula intake, bolus feeds, etc.) will be provided
- How lunch and snacks will be accommodated for safety
- List of “safe foods”
- Availability of water/food/restroom access
- Who will provide safe foods, supplies, etc.
- Location of storage for formula, safe foods, feeding supplies, etc.
- Full participation in all school-sponsored field trips and extracurricular activities
- Accommodations for field trips and special activities (parents should NOT be required to attend for student participation)
- Extra time/testing accommodations
- Teacher to provide missed instruction
- Reasonable time period to make up work
- Absences without penalty when related to the disorder
- Guidelines for handling vomiting and bowel disturbances related to the disorder
- Parent to be notified in advance of special activities
- Parent to be notified in advance of food-related instruction
- Parent may send in snack or special instructions
- Substitute teachers provided with written instructions
- Equal treatment and encouragement
- Privacy provided if desired
- Confidentiality
- When to notify parents of concerns
- Emergency contact information
Aiden will need one too.
How am I going to do this?
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