Noah's Dad

The following is a letter my wife wrote Noah’s first-grade teacher on his first day of school. She also wrote one for his first day of Kindergarten as well if you’d like to check it out.

Dear Ms. [XXX,]

We are very excited to be a part of your class this year, especially with your background in special education. We are also so excited for the changes that have occurred in how the special ed and gen ed programs will work together this year. I think the idea of co-teaching is very progressive when it comes to inclusion and I couldn’t be more thrilled. I’m so proud to be part of our school and encouraged to see them making changes to include the kids from the neighborhood who may have high needs like my own son.

I hope you don’t mind if I tell you a little bit about Noah to help you interact with him and help him succeed in your class (plus maybe make your life easier). We are so appreciative of you being willing to take a child with special needs into your classroom. We know it is not an easy task but I hope at the end of this it will be a positive experience for everyone involved. I hope you see us as a teammate and we are honestly happy to help in any way that we can. We want to make your year great, and we will ask for things that you feel will be helpful for you in the classroom if you see the need.

Noah was born with Down syndrome, which means that he has an extra copy of his 21st chromosome. It causes certain facial features, it makes him smaller than his peers (his hands are small as well as chubby), and he has as an intellectual and developmental delay. Some of Noah’s biggest battles in his life have been caused by hypotonia, which doesn’t mean that he is weak but that he can’t hold tension in his muscles at rest. He feels like a wet noodle most of the time in all of his muscles including his mouth and tongue. He is quite active now and will be all over the playground. His speech is affected both by hypotonia and his intellectual delay. We get speech and occupational therapy through school.

He will be attending private speech therapy in addition to what he is doing at school. We continue to see progress in Noah’s ability to communicate. He is speaking in sentences now than ever before, but also tends to go off and babble with only a few words that are understandable. He loves to tell stories, but again you can usually only make out a few words during that time, his favorites being: mommy, daddy, baby (little brother), airplanes, movies, popcorn, spaceships, Mickey, queen (McQueen), and home. He also says “I want” a lot. He will still break out his signs when needed, and he continues to make up some signs when he feels ignored. The more you listen to him the more you will understand so in the next few weeks you will likely be a great Noah interpreter. He is much better at saying prompted words when there is a picture included. An important thing to remember is that he can understand much more than what he can say.

I used to say that Noah was great at following routine and instructions. I learned my lesson last year that this was not the case. He does mimic peers well, so if you point out good behavior he will usually follow. He also does much better with a picture schedule, which is part of his IEP. If he is distracted it is likely because he doesn’t understand or he can’t see what you are talking about. I was surprised that circle time was hard for him last year, but I think part of the reason is that he was overwhelmed by everything to look at. If you can put things in his lap he will do a lot better. He has nystagmus (which for him is a subtle rhythmic beat to eye movements), in order for him to focus he has to tilt his head and will look to the left so his right eye is the main eye being used. This gets him to his “null point” where it is easier for him to see because the eyes are no longer moving. When you see him doing this he may be having difficulty focusing on what you are referencing. He doesn’t need glasses per his eye doctor to help with this.

He came a long way in his fine motor skills last year. He went from not drawing anything interpretable at the beginning of the year to doing pictures where we could make out swimming pools, people, and variations of spaceships. He also went from not being able to write to writing his name. He can trace pretty well now and is being able to do smaller sizes than before, but ideally, right now a 2-3 inch space is needed for proper tracing for him. Matching and pointing to pictures is a much better way for him to communicate his knowledge.

Noah truly loves to learn. I am realistic about Noah’s goals and know that he will most likely never be on grade level, however that doesn’t mean I don’t want to challenge him. He tends to not want to do things that are hard for him, specifically fine motor tasks, but with the right encouragement will start trying. He may use his hand as a phone to call us to get him out of difficult tasks. It’s quite funny. My biggest goals for him are not actually educational. My biggest goal is that he feels included in the community where he lives and the people know him and value him. That’s why I love [his elementary school] so much right now, they get that desire and are trying to achieve this with changes they have made. Last year I was terrified to send my son to school, but after meet the teacher this year and seeing my son warmly welcomed by his friends from last year and playing on your bears my heart about exploded. I know that you and Ms [XXX] will work together to educate my son the best that you can and he will achieve the goals his team puts in place.

We have found that most kids Noah’s age think that he is a baby because of his lack of speech. I’m hoping his previous friends will help his new buddies form friendships with him. I have previously come into his classroom to explain a bit about Down syndrome as well as encourage the kids to make friends with people that seem different than them. I read 2 books and played two games (one includes marshmallows in the mouth). I am happy to do this again as requested. Wednesdays are my day off, and I could come in early in the 28th but have to leave by 9. I used to be all about inclusion because I thought it benefited Noah, but now realize it is just as important for the other kids in the class as well. Your kiddos are going to hug more than ever before.

BEHAVIOR ADVICE

Helpful tips to get Noah on task

• He will do better if given 2 options to choose from so he feels like he is in control
• Telling him 1st we do this and 2nd he gets to do something else (reward or activity he is trying to do). We have been working on getting to 3rd this summer.
• He loves to help, so giving him a task to help with will usually inspire him to move. This is very helpful in transitions. Ex: door holder, line leader, etc
• Offering two hands and labeling them with choices, usually one consequence and the other the task needing to be done. He will nearly always pick the consequence and then quickly change to the good choice. We use time out most frequently with this and it is simply to sit down in the location he is in, he sits there for a few seconds, then if you hold out your hands he will pick the other hand and do what he is supposed to do. (This has been a huge game changer for us the last few weeks)
• Pictures can be very helpful and I believe Ms [XXX] has several already made for him that may be useful. She also works with him on good choices and bad choices.
• Noah’s biggest motivator is actually praise. He loves a good cheer, high five, or fist bump. He doesn’t like treats, but the treasure box last year was a big hit for him to motivate behavior.

I’m happy to work with you and Ms [XXX] to come up with a behavior chart for Noah. Last year we had his entire day broken up into about 16 sections and he earned a green, yellow or red. Any red meant that he didn’t get a prize that day. 5 or fewer yellow got a stamp (at the end of the year, we started out differently) and a perfect day got a prize from the treasure box.

RUNNING!

I wish we didn’t have a runner but we do. He tends to want to run when he sees somewhere he wants to go but is not being directed that way. He also does it much more with new faces than those he knows. He loves a good chase, so is usually laughing during the event. He rarely responds to stop and thinks it is funny. Freeze is often a better word to use. I would provide a consequence for any running that he does. His usual consequence is time out. He never made it far last year but did make it out of the classroom. This is one reason we asked for an aide any time he is in the gen ed class.

Playground

Noah loves the playground, so much so he usually doesn’t want to leave. This was a huge issue last year and we tried a lot of things. He knows learning occurs once inside, so he would much rather stay outside. It is in his IEP that he should have an aide/extra person out there with him to help. If one is not there, ask for help.

Potty

[I removed this section from the letter as it is peronal to Noah, and we don’t want to put all of his business out there!] 🙂

All about Noah

Mom: [Personal infomation] Dad: [Personal information]

Brother: Jaxten, “Baby” 3 years old
Pets: Giant golden doodle named Jake, a small Shih Tzu named Gizmo, and a beta fish named Bubbles.
Extended Family: He has a grandpa he calls Popeye, a Grammy and a Nana. (Talks about them frequently)

Summer: Noah went to his visit his grandparents. He got to fish, play with cousins and go to an adventure park. He is a thrill seeker and loves roller coasters. He loves Six Flags. He also went to a few camps. He was mainly with sitters and did some swimming, zoo and movies with them.

Favorite things: All things Disney. Mickey, Cars, and PJ Masks are his current favs. He also likes super heros specifically Iron Man and Captain America. He enjoys to look at books and pretends to read, but is definitely talking about the pictures. He will often use his hand as a microphone and sing or tell stories. He likes to pretend his hand is a phone and take pictures or talk to his family.

We are so thankful for you and have been praying for you and Noah for this year. Let us know if you need anything

[Noah’s Mom]