achondroplasia and school

We have learnt to help our son be successful and comfortable in every kind of environment as we wait for God’s miracle to manifest. We have found that it is a good idea to prepare the people around him and help them understand what is happening to our son. Last year, our son attended public school and we were very blessed to know how the teacher and school staff prepared for him and even connected us to other kids with the same condition. We were very impressed to se how the older kids in other grades gathered around our son and just loved on him. This year our precious boy is going to Christian school, and I am sure it will be a great year for him, I am sure he will be loved by all but he will also be blessed not only by the love and kindness that will be given to him but also because of all the security and love he receives at home, and because of his knowledge of how big and awesome God’s love for him is. We have taught our son how to respond to questions like, “Why are you so small?” and how to ask for help if he needs it, even how to say no  to things that are harmful for him without crying or feeling bad about it. I am adding a copy of the letter we send to school, every year a few things change and have to be edited but for the most part hopefully this will give you an idea of what to say and how to start. Please share this with your friends.

 

August 26, 2013

TO: The staff at (school name _____________________________________)

Our son, Samuel, is attending 1st grade this year at your beautiful school ________________. Samuel is looking forward to meeting his new teacher, his new friends and ready to enjoy his new classroom. We would like to greet you and thank you for taking the time to read this letter as it means a lot to us and to our sons Samuel and Amadeus.

We are writing this letter because Samuel has the challenge of achondroplasia which is a form of dwarfism, and we have found it is quite common for both, children and adults to have questions about his condition and well-being. We appreciate your concern for Samuel’s safety.

Achondroplasia

1.         There are over 200 distinct types of dwarfism. Samuel’s battles achondroplasia which is a bone growth disorder that affects the long bones of the arms and legs.

2.         Some dwarfism types are recessive (carried within the parent genes), others are what are called “spontaneous mutations at conception.” Samuel’s form is not recessive.

3.         According to the specialist there are no “cures” for Samuel’s growth challenge, although limb-lengthening has been used on some people. Limb-lengthening is a controversial and painful procedure, which happens during puberty and will not be considered by us as it is a horrific ordeal to which we will not subject our son. HGH (human growth hormone) does not work for achondroplasia.

4.         Over 80% of all people with growth challenges have average-height parents and siblings, as our case.

5.         Samuel’s adult height will be somewhere around 4’6”–5’00 according to the doctor’s report.

6.         It is extremely rare to have retardation in conjunction with dwarfism; only a few very rare types correlate to any type of mentally handicapping condition.

Terminology: Samuel knows he has a growth challenge, not in those exact words but he is now cognizant of the difference between him and his school mates or friends. We are still working on training him to respond correctly if asked and are teaching him to say “my bones don’t grow as fast as yours and that’s why am smaller”, or something to that effect. Perhaps, if you are asked by children why he is short that might be a good way to explain it to them. 

The word “midget” is never used anymore among most in the short-statute community; it is seen as very derogatory word. We use the terms “short stature” at our home.

 The word dwarf is technically correct although we never use it when speaking about a person as it too is considered derogatory, hurtful and offensive to him and many.

We also use “average-height” as opposed to “normal-height.” Everyone has their own opinions, but to us, short stature or short limbed people are just shaped differently, not “abnormal”. Samuel is a very normal, energetic, smart 6 year old who has a 4 year old average-height brother.

Please, as necessary, advise the other children that Samuel is the same age as other 1st grade children. Samuel will have his 7th Birthday in May and though he is not as tall as the rest of the children we would like him not to be labeled. We would like his mates to be encouraged not to use nicknames. Samuel, like all of us, does not enjoy to be called names. This will be something that would frustrate him and irritate him and is not right. Samuel does not enjoy to be called “baby” it really hurts him and makes him cry.

Safety

We would like to give you some detailed information relating to Samuel and his safety Please remember, and remind others, to treat him as any other 6-7 year old child in your classroom, or the school.

1. Please let Samuel do as many things on his own as possible. We are encouraging him to be independent. This may mean finding a creative way to do something, or that a task takes a little longer for him to complete. Usually it involves standing on a chair or a stool. Samuel has a good balance and he will tell you if he does not feel safe or when he needs help.

2. Please do not let other children pick up or carry Samuel; a bad fall can be serious to him.

3. Samuel will often feel warm to the touch, and is usually comfortable in cooler weather.

4. Because his arms and legs are short, Samuel tends to fall more than other children, usually on his stomach. He will be very embarrassed and cry if he notices somebody laughs at him.  Although it looks painful, he rarely gets hurt (unless it’s a fall from a height or he hits his head). He usually just pops right back up and continues on with whatever he was doing.

5. Samuel enjoys being among people, it energizes him. Sharing, playing, talking and asking lots of questions are things Samuel really enjoys.

6. Games that involve running like tag and duck/duck/goose can take Samuel a little longer than the other kids, but if he is given the opportunity and a way to get involved, he will really enjoy the game. Perhaps you might ask him personally if he is fine with the game and follow his lead to his comfort level of participation.

7. Samuel’s spine and neck are more susceptible to trauma than other kids so activities that put a strain on his neck or any type of whiplash motion are to be avoided. He is not to do a head stand, or a somersault. Although he can do a cartwheel it is preferable not to encourage cartwheels too often. He will be instructed to stay out of the monkey bars and high climbing structures.

     8. Samuel can be quite strong-willed and funny. At times he can get into a little fuss with his mates over toys and things that he might be enjoying but for the most part Samuel is obedient and always wants to do his best and what is right.

Something that concerns us a little bit could be that bigger kids try to take things away from him. We ourselves have witnessed this as we participated in group events or birthday parties. Sometimes other children his age but taller will even chase him around to take toys or things away from him, without asking him if he is done or without encouraging to take turns. We understand this may be normal child behavior but this frustrates and makes Samuel upset and angry. Of course, Samuel like all children needs to learn to share. The best thing to help him will be to encourage his mates to ask him if they can take turns as we do at home with his brother and Samuel will respond to that with his honest opinion.

We would like to thank you all for making Samuel’s physical environment more comfortable. You do not know how much that means to him and to us. We also want to thank you again for making the time to read this letter and we are open to come to your office to talk to you about him at any time you request us to.

 Samuel enjoys going to school, last year he was loved and taken care of at (his other school) also helped pointed us in the right direction for tools that assist him to be more successful at his school environment. We have purchased to help, have them ready to go for this year and would like to bring them on his first day of school if that is ok with you.

Important that in the event you have “rug” time or a time when the children seat on the floor, Samuel will be more comfortable sitting on a small chair or on a cushion pillow. We have learnt that it really works best if the cushion and chair are provided as an option for Samuel instead of labeling them as “only for Samuel use” items. This was the procedure followed at (his other school) that worked very well. No one even noticed the items except for Samuel and another little classmate who would take turns with Samuel due to health issues as well.

We can say that last year at (his other school) went very well, much better that we expected. Samuel was loved and respected and he even made good friends with the kids of the higher grades. We know that you will do your best to help him and for that we are very grateful. We have walked around your beautiful facility with our boys and they are looking forward to starting school with you. My husband and I are very happy to place Samuel in an environment of faith in our Lord Jesus and to know that he will be surrounded with great people.

We sincerely hope you will enjoy having him in your class at (school name) Samuel certainly is a blessing to our lives and we appreciate the Lord gave him to us. If you have any questions, please do not hesitate to contact us via email at:__________________

If you think it would be beneficial to meet and discuss the above, we would really like to do so. Also, we are open to write a letter to the school parents at your request.

We appreciate all you do and pray the Lord will strengthen you as you teach our children. God bless you.

Sincerely,

Bob and Maria Ricci

 

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