Kids with TBI Children with TBI

Letter to My Child's Teachers and Administrators

Karen T., BrainLine
Letter to My Child's Teachers and Administrators
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We are in the process of transitioning my 9-year-old son from a traumatic brain injury rehab program back to public school. Some have asked that I share this letter that I wrote to his school, with the chance that it could help or inspire others. If it helps one or two, I am happy to do so.

Dear Teachers and Administration,

As we transition Timothy back to public school, I want to thank you in advance for the care and love that I know you and the entire staff will give him. As a mom who has witnessed what he has been through in the last year, I admit, I am nervous! (yes, sorry I may even cry some..) Through this process, I have been forced to trust others that they will take care of him as their own. We have come so far from a year ago where the medical staff said progress would be slow. Day in and day out, we watched helplessly as he cried from head pain, struggled to remember basic facts (birthday, last name), and walked in an unbalanced stupor.

So…..here we are, a year later; we’ve all been changed by this event; as most crisis situations will do to a family. It took me a long time to fully admit that my child had a “Traumatic Brain Injury.” A “concussion” sounded so much easier to accept and understand.

The reason I write is to ask you to educate the kids, and even the faculty. Many do not know or understand what happened to him, if he is “normal,” or how to treat him. Traumatic brain injuries are not obvious. They are not like a broken leg that gets put in a cast. They are obscure and the process of recovery is usually very long ... and recovery is subjective as some strengths are never fully regained. I ask that the children treat him normally. They can ask questions, Timothy is pretty open about his injuries and his struggles; however he, like everyone else in life wants to feel normal, accepted, and confident. Brain injuries can steal those qualities in an instant. He will struggle to adjust back to public school, he will get frustrated, he will shut down; after all, he remembers who he was before his injury. He is keenly aware of his deficits, tries to compensate as best he can, but there are still many areas, both cognitively and physically that are still compromised.

Please accept him as he is, help him feel good about the child he is today even if you remember who he was yesterday; and keep in mind the inner strength that he has shown through all of this. At the end of the day, please remember that he is just a 9-year-old boy who has come through more than many of us can truly understand.

I know you will take good care of him, we thank you for that. Please don’t be surprised if I bring him on day one, get him settled, then run into the bathroom to cry ... this has been a long road for all of us.

With sincere thanks,

Karen T.

 

Posted on BrainLine March 4, 2014.

Comments (27)

Please remember, we are not able to give medical or legal advice. If you have medical concerns, please consult your doctor. All posted comments are the views and opinions of the poster only.

Katherine Lit i replied on

Dear Mom, Teachers are all different kinds of people. Some of us have brain injuries too and we are going to teach your son that is ok to have a brain injury in our classrooms, because we do, and that we might have to work differently to achieve our dreams, but we can still achieve them. We will set an example of self-care while managing in this world and we will really understand when your son is having a bad day. Signed a teacher who gets it.

Anonymous replied on

Wow! I'm in tears! Thank you for sharing this. My son is a TBI survivor and will be having his cranial implant in one week. He will start back to school hopefully in late April. I feel the same way you do! I can only hope and pray for his safe return and acceptance! I would love to hear more about your journey.

Anonymous replied on

My now 12year old son is a 5+ year survivor of a severe TBI. Your letter is amazing. I wish I would have wrote one to his old school. He was broken down, bullied, and made to feel "stupid". He didn't make much progress past his one year eval. We moved and changed school districts. He is now an A/B student, with some friends, and a support system at school that understand TBI. It is sooo important to educate on this invisible disability. Much love and strength to your son and family!!

Anonymous replied on

I sincerely hope this letter is passed through facebook and other media. It teaches us all very important kind, be thoughtful, be helpful.

Anonymous replied on

Beautiful. Thank you. I'm 10 years from TBI at age 30. I wish adults with TBI got to have loving letters like this too. I'd pass them out as leaflets to all who love me. I believe in your family and very much your son. Usually I have trouble being inspired by the stories of adult TBI surviving. I usually can't even use the word, survivor. It's really lost on me. Because like your boy, I too remember the person I was before the car accident. And that 30 year-old is gone. She changed. I miss her. But because your son could've been my son... it's easier to relate. Lately I've been able to finally communicate... I get angry when I get confused. I never had so much anger in my life. My TBI is right frontal lobe and pre frontal lobe. Executive function loss and troubles with visual learning. I am federally disabled. I was at the top of high functioning when the lady hit me. Ivy league and ready for think tank work and marriage. But it's gone. In an instant I'm an atheist... friends leave.. better friends stay. I live with my parents now. I use many games and audio books. I still read a lot of books about faith and theology. I don't like TV very much. I like comedy, cartoons, and gardening... anything beautiful and peaceful coexistence. Simply put... images of human emotions... film tv photography are difficult for me. I share maybe it helps you with the anger spikes and empathy-loss that is universal to many TBI. Pets help empathy. And kids. Anger was not my default setting before. I'm a young woman, you know? It's embarrassing when I get a tantrum. At times I just need to vent out loud and not to doctors and therapists. You are right the process is slow. Altogether too slow. PTSD slows it down more. I confide... I'm really glad I get mad before I get sad. Because anger motivates me. Crying does not. I'm really sorry that you got handed what my mom got handed. I'm much closer to my mom now. I love her and my dad... it's so fun to make them laugh.

Peace. And respect,
Sonja

Anonymous replied on

I have a special needs grandson who is very young for his actual age. He needs so much compassion and love and I try not to walk in fear of cruelty to him but in faith that those who surround him will be patient and loving and always remember but for the grace of God there go you or I.

Anonymous replied on

K, as a friend from our boys preschool days, and knowing your Tim from "before" his accident, I pray that he will transition with a whole lot of extra love and care around him. We too know only to well about illnesses in our children that are not visual, and take many years for full recovery, I feel your pain and know how hard it is as a parent. We will pray for Tim these 40 days of Lent and hope that all goes well for all of you and him. Don't apologize for the tears, they are healing waters for all of us. Peace.

C

P.S. we have the Roscoe connection.

Anonymous replied on

Thanks for sharing. You are a wise mom to share this with his teachers, so they see him as a person with a TBI and not just as a TBI kid :-( Our son is in year 17 of rebuilding his life after his TBI and growth and progress continues ). I hope your letter helps his teachers and therapists focus on his strengths and gifts.. ..When they look for strengths and continue to reflect those to him, he will grow in amazing ways....

Anonymous replied on

First of all, we pray for Tim's continued recovery. I have been in contact with his grandfather, and he has kept us posted on a very regular basis. I am so glad that he is on the road to a recovery, however long and difficult it may be. As a parent, it is as much a road to recovery for you as well. We too, have a grandson who suffered a concussion in a basketball game. Though it was not as severe as Tim's, we all agonized and prayed for his recovery. It was very slow and sometimes arduous, but God has given us peace of mind that all things are possible. Thank you so much for sharing your story. God Bless!!

Anonymous replied on

I am an RN who is currently working with TBI adults, many you had their brain injury as young as 16. It amazes me when I see them and how far they have come in their lives! Please know that I will prayer for you, your son and family as the challenges of living with TBI bring both joy and sorrow. Please look into a TBI program to help if you have not already done so, in NYS it is called HEADWAY of WNY, in Buffalo,NY www.headwayof wny.org. They may be a source of help for you. Mary Degnan RN New Vision Services, Inc. mary.degnan@newvisionservices.org

Anonymous replied on

Karen, Thank you for sharing. Anthony told me that Timmy graduated from the program ..... That is great. So glad to hear it. I will keep you and your family in my prayers. I hope to see you soon.

Jenny P

Anonymous replied on

I have been an education advocate for 17 years. It has been my experience that students with a traumatic brain injury are misunderstood. I love the letter and will share.

Anonymous replied on

This letter has touched me at so many levels. On April 2 it was 12 years since my daughter's TBI - she was 15 years old.

When all medical professionals believed my daughter would remain in a coma/vegetative state I did not believe them. Unable to communicate, eat or walk all I had to do was look into her eyes and I saw life but her brain needed time to heal. If my daughter remained in the facility her care would have been palliative care...a death sentence.

Eight months later when she was still in a coma/vegetative state I brought my daughter home. I cried behind closed doors knowing that I could not remain in that state because this is a LONG journey.

2 years after her accident my daughter began speaking and then she was able to eat food again versus g-tube. To date my daughter lives in her own home with 24 hour supports which I manage for her. She is still unable to walk and only has use of one arm...but she is thriving. She has a boyfriend, she lives in her own home and she is part of our community. She is not segregated to specific programs for people with disabilities...she has her own social connections.

Thank you for sharing your letter.

Anonymous replied on

I am also a TBI, at the age of 52, at the height of my career, marriage, my own children starting into their careers and I lost it all. I knew what the changes were, I knew what I used to be able to do and that knowledge is so difficult. The one thing I could do was to start my life over again. I did so with quite a bit of success, I did lose the marriage and after 12 years remarried, my pets have been a godsend and now I have grandchildren with whom I have have a great relationship, I adore them. The one thing i know is that if you read between the lines it has been love that has pulled me through. God's love, a husband's love, children and grandchilren's love and then there are our fur babies. I could no longer work and this is my life now. I thank God I had had a life of sorts before I was stricken but my new life, with hard work is full of joy. I send my prayers to you that your child heals to the fullest. R

Anonymous replied on

Keep fighting the fight because it's worth it. Always go with your gut feeling because it's guiding you. A huge hug to you and your family. From one mom to another.

Anonymous replied on

Thank you for sharing. No matter the age of your child--mine was 20, communication is key with their school. My son's college has an active Student's with Disabilities center that my son took full use of even prior to his return to school. They helped him navigate his last 2 years of school. I also communicated with his teachers, and this letter reminds me I need to write a final thank you letter since he graduated with honors last Dec. and is now living on his own and working.

Anonymous replied on

In iowa schools and docs had no clue how to handle a TBI. It was an awful experience with bullying and threats by school and docs and the state. An attorney told us to leave the state which we could not do..people who have had a TBI and good experiences with docs and schools are lucky they didn't face what our family did after a sports injury TBI.

Anonymous replied on

You are an amazing mother and advocate for your son. Your son sounds like an extraordinary kid and I hope his journey celebrates each milestone and each bad day allows for learning new coping techniques and strategies. I am 6+ years out from my TBI and promise the days get better as time goes on- life becomes more precious and he will learn to appreciate how strong he is!

Anonymous replied on

I thank Karen for writing her letter and BrainLine for posting it. Only recently have I begun to come out of my fog, gratefully with ever increasing frequency.

Discovering; understanding, digesting, accepting - only to then begin to move forward. This has been my process - after several head injuries during my life time.

I am so grateful for somehow having stumbled upon these resources. Sadly, no one - not medical doctors , therapists, hospital administrators... ever mentioned resources available to help me navigate my difficulties with head injuries.

I am deeply grateful for being able to read about the journeys of others and their families. It helps.

Chris Jay

Anonymous replied on

thank you for sharing ♡

Anonymous replied on

Good luck. My son's school wasn't very accommodating, they wanted to put him in classes with children with very different problems. I had to pay for cognative rehab, because they had no one qualified. They a said the speech teacher was qualified, but she would yell at him for forgetting what he was supposed to do, when short term memory problems was a big part of his problems. And yes they were informed of his limitations .

Anonymous replied on

Amazing! My son was 16 and his high school also was not ready for him. I quit my job to help him with his recovery. I had to be very involved with the school to make this work. He graduated on time with my supervision. These types of injury require a team effort. Your letter is amazing and really touched my heart.

Anonymous replied on

Thank you for sharing your story about not only your son's struggles but also yours too. Fifteen years ago, I too had a brain injury and have others before and after, I understand your son's struggles of recovery, whereas I have recovered in several areas I still recognize my weaknesses and those areas I have not regained or ever had learned! It has been a long journey with many ups and downs for me.My prayers go out to you and your son. Your story touches my heart not only for what your son has endured and the inner strength he has to keep fighting forwards but your strength and care for your son is what touches me also. It has helped me to see things in a new light as to what my mother endured for me, she made many sacrifices and many efforts to make sure that I was being taken care of. I was a young adult when my worst case occurred, this many years later through this website, others, and similar stories I'm really just now learning understand and accept my brain injury. After recovering enough to do some things, I thought I could continue to live the way I always had, I took many things and life and those closest to me for granted, I did not see it then but I do now! I just wanted say thank you for reminding of what a mother's love means, and the care and love they have for their children. May God be with you and your son

Anonymous replied on

Thank you for sharing. My 15 year old is currently starting home school as she couldn't handle public school any more. She tried so hard. The kids in middle school last year and then in high school this year who stopped being her friends and those who gossiped that she was faking it will hopefully understand some day what a TBI is. Please share this everywhere, people! Awareness will help our children!!

Anonymous replied on

That is a great letter. No one can truly understand until they've lived it. You as a mom are doing a tremendous job. He understands who he was before and may have no memory of what transpired to make him so different. you're right about when people find out you have a head injury. You seem to become a different person to them. I have a small book on Amazon. "I didn't die because God wasn't finished with me yet." By Dr. Mary Adkins. it has some help for caregivers.

Anonymous replied on

Great letter, my son is back in School after a severe TBI on March 13. He is Having trouble with teachers understanding TBI. PHYSICALLY he is as nothing happened thank God and he is great at covering up his aphasia. So teachers think there is nothing wrong with him. I wish the district would educate teachers more on this condition.

Anonymous replied on

Amazing letter. I too have a child with TBI. But mine is 16. his accident was almost 6 months ago. His injury was severeTBI. Although he is walking and talking he is not back 100%. Teachers and staff see him and "say he looks like nothing happened". Deep inside I say "If they only knew". Very tough journey to get him to where he is now. I'm Upset that his teacher have no idea what TBI is or how it affects his school work. I don't want them to have petty on him I actually want them to learn and educate themselves on the affects of TBI and how to educate him in a educated manner. Your letter will help me approach them in a peaceful manner. Even though I want to approach the opposite way because I'm sad and. upset.