Noah’s all “thumbs up” on his first day of school!
It’s hard to believe it’s been almost three years since Noah first started to school (and we wrote our first letter to his teachers)…time really does fly!
A lots changed in those three years. Noah has a new little brother. He was grown in leaps and bounds. We moved to a new city. And Noah started a new school while we were on the waiting list for the school that he started today. Noah now attends a private Christian school that is 100% inclusive for the entire day (in fact, I believe Noah is the only child with special needs in his class.) At 11:50 the (short) bus comes and picks him up and takes him to our public school’s PPCD program (which is a program for children with special needs) and then brings him back at 3 pm. He is doing really well and really having a blast learning and interacting with his peers. We are so proud of our little boy.
My wife stayed up late last night working on a letter to send to school with Noah today at the private school he’ll be attending, and I’ve attached that letter below for anyone that may be interested in reading it. Feel free to share it / pass along.
Dear Teachers
I would like to take a moment to help introduce you to Noah. First of all we are so excited for him to be a part of your class. We know that he can present some challenges, but I think you will find that he is a welcomed addition to your room. He is able to wrap most teachers around his finger and the kids end up giving lots of hugs by the end of the day.
Noah has down syndrome, which means that he has an extra copy of his 21st chromosome. I don’t know if you have had the pleasure of knowing someone with Down syndrome, so I hope that you don’t mind if I tell you a little bit about what the means. Noah has certain characteristics which are common for children who have Down syndrome including upslanted eyes, low set ears, and being smaller than you would expect for someone his age. He also has hypotonia which means that he feels floppy. This however doesn’t mean that he is weak. He has developmental delays as well. His biggest battle right now is learning to talk. He has a lot to say but it is difficult to decipher. He knows several signs and has a growing vocabulary. He has difficulty putting words together in a sentence but is very good at “I want”. He works with a speech therapist and occupational therapist weekly. He will not be present on most Wednesdays because we will be at therapy.
He attends the preschool program for children with disabilities at [a local elementary] in the afternoons. The bus will pick him up and drop him off. He seems to really enjoy it, with his favorite part being the bus. When he started this program, it caused him to start skipping his nap. While he can survive without a nap, we did notice that he was a bit more sensitive to his friends and if frustrated would act out against them with pushing or biting. I think he was trying to communicate that he was tired. It is something to just be aware of when he returns in the afternoon.
He does really well in a group setting. He will mimic the behaviors of others and usually wants to do what his friends are doing. He is quite stubborn but understands choices. If you give him two options he will usually choose one. Distraction works for him as well. As mentioned he can be quite stubborn initially but with patience he will usually start doing what is being requested of him even it involves just sitting quietly with him for a moment. We understand more than anyone how easy it is to cave and let him do what he wants, however we hope you expect of him what you would expect of other children. His difficulty with language makes you think of him as much younger and that he doesn’t understand, however he understands the majority of what is said to him. If he does something he shouldn’t he will say I am sorry. He also knows thank you and please.
It is hard to know exactly what he understands when it comes to his letters, colors and shapes. He can match them easily, but he will not say them when asked. He will repeat what you say, but will not say them spontaneously on his own. He has difficulty with fine motor skills so has only recently started drawing circles. He works on these tasks with his occupational therapist. If you help him hold his pencil/pen he can do a much better job of tracing and writing letters, but on his own is just starting to be able to do this. He is also just starting to work on using scissors which is a difficult task for his hands. Repetition is very helpful for him. When it comes to songs, if you are a bit patient and slow it down he will try his best to keep up and do the hand movements and what not.
One challenge for us is potty training. He will go on the potty, however he has a hard time realizing that he needs to go. He does pretty good with a schedule. He however has come to enjoy putting his clothes in the toilet, so you will want to keep an eye on him. He finds it fun to change clothes, so he knows that if they are wet he gets to do that. While if his clothes are soaking, we understand changing, but feel free to leave him a little bit wet so he doesn’t keep doing it. We will start in pull ups here but we have a stockpile of underwear ready.
Down syndrome is only part of our son and we hope you get to know other parts of him as well. He loves books, trains and cars. He is a big fan of Buzz Lightyear right now and has always loved Mickey Mouse. He knows all the parts of Mary Poppins and Frozen. He loves to give hugs and has a contagious smile and laugh. Our view can be reflected in the way that we talk in that he is a child with Down syndrome and not a Down’s child. We refer to a child without delays as typical rather than normal.
We are happy to answer any questions you may have and are here to assist him in any way you think is needed. I hope these tips about him help you understand him a bit better. We again are so thankful that he gets to be a part of this classroom and are excited to see how he grows.
Thanks
Abbie and Rick
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Noah is entitled to speech/ot/pt through your public school even if he goes to private school. You should advocate to get these therapists to go to the private school and give him the therapy there. (This is referred to as push in ) He should also get extra therapy like these by using your medical insurance. I personally have a young adult son with a speech delay. He got speech through school 3x week and our private insurance paid for one on one speech therapy once a week.
He should have an IEP even in private school. Make sure they will work with you and his IEP. (been there done that)
Noah gets speech at his public school time and does his private therapy. He doesn't qualify for other therapies through true public school system as of now.
Hi,
I just want to share. My sons speech therapist of 2 months, told me my son doesn't know how to make choices. My son is very intelligent. He knows how to make choices. I am devastated. I don't want to remove him from the school. However, I immediately got up and went to their administrator and explained what the speech therapist had communicated to me.
This statement surrounded me asking for a justification letter for baby signing time. when he starts making choices, I was told, then I could get a justification letter.
O f course the administrator spoke with the speech therapists, who then called me after we got home. She went on to deny she ever made the statement "He doesn't make choices". This speech therapists went on to say I don't write random letters to people I don't know. Those DVD's are expensive. I informed her All I was asking for was a letter stating that my son is non verbal and would greatly benefit from learning sign language. I was told we can talk about it on Monday.
I replied I am actually at the peds office picking up a script for the entire signing time DVD, collection.
My issue is this women is teaching my son. Is she going to do right by my child? For now I can attend class with him!
I understand what you are going thru. When my son was three and very shy with new people, he was to undergo tests with a Psychologist he had never met. She went thru her tests and at the end, told me he would never pass the intelligence of a 3-4 year old. All because he wouldn’t do what a complete stranger asked of him. I explained he did it all at home (I worked with him daily) and to ask his therapist, who he knew and also did the tasks for her. She refused to listen to me or talk to his therapist and she mentioned that I was in denial for not accepting her diagnosis.
Luckily, when I talked to his teacher and therapists, they told me to ignore the “professional” psychiatrist’s diagnosis. They knew what my son was capable of and were encouraged by his progress. My son graduated from high school and went on to be a Head Start teacher’s Assistant for ten years. He is a compassionate, sweet young man who is loved by all who know him.
You are your child’s best advocate and you will have bumps along the way with those who teach him. My suggestion is continue to be by his side and YOU teach his teachers what works best for his development. After all it is you who are with him 24/7 and no one knows him better than you. You will encounter some not-so-good teachers/therapists but on the flip side, you will have some that you truly love, throughout his education. Be patient and kind as you encourage his teachers to work with you - not against you. Good luck on your journey. Nick’s proud Mom, Shirley
I believe it is a teach
Hello, my name is Nicole and I just wanted to say I love your site. Noah is absolutely handsome. I am wishing him all the best today and always.
Thanks Nicole!
i grew up in a very small town, Georgetown, sc. Our family doctor, who also delivered me back in 1946, had a son 1 year after I was born. Robbie had Down's syndrome and the normal thing to do, back then, was to put these angels in institutions. Dr. John (Assey) was adamant that he and his precious wife and 5 other children would raise Robbie at home. He became the ambassador of Georgetown. Tourists were greeted by him, as a young man. He was given a hat and badge by the Police department and made sure that each storefront on our Main Street was locked at 5:30. He was loved by all and after his parents passed away, he lived with his aunt Janie until she passed away. He was put in an assisted living facility when no one else could take care of him. He passed away 2 years ago and the City turned out in droves for his funeral. I still miss him, but realize he lived far longer than he was expected to. Mainly because of everyone treating him like a "regular" boy and man.
I love seeing Noah and your videos of how he is being raised. God has blessed you with two beautiful children, and blessed them with having you and your wife for parents.
I smile, just thinking of "our" Noah. It is most wonderful of you to share him and his little brother with us. Noah has the most wonderful parents. Oh, that all those who have Down Syndrome might have such!
God's continued blessings to this loving family of four.
hugs and blessings, Nani Jackie
Our grandson Rudy has downs. I am so thankful for you and Noah (mom to) for sharing your story and allowing us to follow you on Facebook. Rudy will turn 2 next month and with you allowing us to follow your journey has helped us to know what and when to expect the next step in life. Rudy is a blessing and there are challenges daily but we wouldn't have Rudy any other way. Good luck to Noah as he starts his new school.
As a preschool teacher and speech pathologist, I would absolutely LOVE to get a letter like that from one of my student's parents. It is just unheard of in my school to have parents that are as involved as the two of you are. I can't begin to tell you how much I would appreciate getting that much insight into what one of my students likes, dislikes, their history of therapy, etc... You are both rockstar parents and Noah's teachers are so lucky to be working with you!
I love your story and I love your son Noah. I wish I knew him. I pray Hod's richest blessing on Noah and your whole family
First off congrats to Noah on first day of school and big kudos to you guys for being great parents!!! I was wondering about advice on a similar topic. I have a 3 year old brother named Blade who has Down syndrome who just started preschool. Luckily his teacher sounds great but was denied an aid to help during his time there since he as well doesn't speak at all. He is in a class room with other typical children and I'm nervous about Others not having patiences with him. I'm constantly worried about others mistreating him and with him not speaking how can he tell us if anything happened, sadly I don't trust the world and my brother means the everything to me I wouldn't change a thing about him and he has changed my life for the better but not everyone sees that but we don't want to isolate him from the world either . Your stories have helped my family prepare for everything to come and any advice would be great thanks for everything!!
Hi I live in n ireland and love reading about your beautiful son and his amazing family. He s a wee dote as we say over here. Keep up the great work you are doing in discussing and improving everyone's thoughts about children with down syndrome xx
What a wonderful and helpful letter and should help his teacher know Noah in a way that she would have had to spend valuable time getting to know him. I enjoy your site and have enjoyed watching Noah progress. You are wonderful, involved parents and he is a beautiful loving little boy which I'm looking forward to see what he does in life. I so excited for him! It will be a great year with many new discoveries. Love, Marcia Holman