Down Syndrome - West River, MD

Updated on December 11, 2010
A.J. asks from West River, MD
13 answers

Our week old baby girl has been diagnosed with Down's Syndrome. Does anyone know of any good books or websites that I can go to in order to educate myself. This is very devastating news and I just don't know where to begin.

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C.W.

answers from Lynchburg on

Dear A.-

I am a mom of a special needs child. Shannon is not 'down's', but is VERY developmentally delayed due to very serious medical issues from birth. Many here have pointed the way toward groups...resources etc.

I want to speak to you as a mom...

Early in the pregnancy, we found out about shannon's medical issues, and knew there would be challenges. I read an article (I can not remember the name or the author, sorry) BUT it described having a 'special needs' child beautifully...

The author said it is though for MONTHS you have been planning a trip to france...you have been shopping and packing and saving...you are looking forward to the museums...the food...the champs ellysee...all of it!! You have done the research...have gotten the travel guides, and have every detail planned...

Then...mid flight...you find the plane has been re routed to holland.

At first, you are angry!! You had planned on FRANCE dammit!!

And then, in time, once in Holland, you discover that Holland is beautiful too!! Tulips in abundance...wind mills...BEAUTIFUL country side...and unexpected treasures you NEVER imagined!!

Having been to both france...and holland (not even sure those are the countries the author used...LOL), I CAN tell you, That FOR ME, that is exactly what it was/IS like with shannon.

She is my 'special' gift! My unexpected trip! I thank god everyday that I was CHOSEN to receive her.

On a side note...I am continually amazed at what she CAN do - and THAT is my focus. Additionally, she has taught her sibs (and others) lessons in kindness, compassion, tolerance and patience that could not have been learned in any other way.

Shannon will be 13 in october. Some of her sibs are away at college...some are still home...but the first question/ greeting from ALL of them is about/for shannon.

Please private me if I can be of help...or call ###-###-####).

Please Take Care!
Soon you will see that this is NOT devastating news...it is merely a change in your 'destination'...complete with wonderful and unexpected discoveries!!

Michele/catwalkl

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M.M.

answers from Washington DC on

Hi A.,

I do not know of any books, but I wanted to send you some support in this . I taught public schools for 10 years and I worked with many students with Down Syndrome. While I can't say that your journey will not be difficult, I have seen first hand the joys that you will encounter too. Any child with disabilities can be challenging, but please believe that they can be just as happy as any able-bodied child. Many people with Down Syndrome even go onto live independently. I don't know where you live, but I know that public schools have success with educating these special children. You have many options either with regular schools or specialized schools such as John Archer in Harford County or Ridge-Ruxtun School in Baltimore County. Your child will qualify for therapy starting at a very young age.

While books and websites are great tools, I would look into finding a support group. That way, you can talk to parents who are going through (or have been through) exactly what you are experiencing. There are tons of resources out there for you....you are not alone. Here are a couple I have found:
National Down Syndrome Society - http://www.ndss.org/
Chesapeake Down Syndrome Parent Group - http://www.cdspg.org/

I am not an incredibly religious person, but I do know that God will not give you more than you can handle. Good luck with everything and please know that many thoughts are with you during this difficult time.

Sincerely,
M.

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R.H.

answers from Norfolk on

Well the only advice i have for you for children with Downs is that each one is different. Don't look at books or websites and let it limit it for your child. Teach and treat your child just as if there was no diagnosis. You would be amazed as to what they will still learn and if you use these resources and let them say "they can't learn this or that" you could and prob. will limit your child. They don't know your particular child and you might not make an attempt at teaching your child to do something she can do. Make the attempt anyway. If she can't do it that's fine but you might come to realize that she can learn something they don't say she can learn. Good luck and hope things go well for you and your daughter.

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M.K.

answers from Washington DC on

I strongly agree with Rachel. While most websites will give "typical" information no 2 children are alike. I have worked in special education for many years (in the school system and now in infants & toddlers)and know this from first hand experience. You will have a lot of struggles ahead of you but also a lot of joy just always hold on to that instant love you felt the moment she was born. From a professional perspective I advise you to stay informed of your rights as a parent of a child with special needs. You are entitled to services from birth. I know you are not there yet but just keep that in mind. You will have to go through all the stages of grief and then become her strongest advocate. In addition to support groups counseling may be a good way to help you and your spouse deal with such devastation because you want to work together to be there for your daughter. Best wishes to you.

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D.S.

answers from Norfolk on

A.-
I agree with the advice that has been given.
God chose you to be the parent of your beautiful baby girl. He could have chose anyone, but He chose you. How special is that?!
ALL babies/children are different...special needs or not. Don't treat your child any different from other children. No, she may not be able to do every thing, but provide her with the opportunities and give her your unwavering support. You will know better than anyone what your child needs.
As a parent, do not allow her growth and development to be stifled because someone has decided to label her. Children, boys mostly :-), all over the world believe if they jump from a roof and flap their arms they can fly. It’s not until they try it and realize they cannot or until an adult tells them they cannot that they start to believe it. Your daughter may have some delays, but who knows what her future holds and what God has planned for her.
I cannot offer any information on support groups, but I can share with you some personal experiences if you would like to contact me.

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L.G.

answers from Washington DC on

Try a support group first. It's always best to be able to talk to others who share your experiences.

Here's one in AA County -
Anne Arundel Parents of Children with Down Syndrome
Phone: ###-###-####
Call for further information

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A.B.

answers from Washington DC on

'I will praise thee; for I am fearfully and wonderfully made: marvellous are thy works; and that my soul knoweth right well." Psalms 139:14

Be encouraged and know that special children always create special families and special parents. Things will be tough sometimes, and sometimes there will be much joy. Your friends and family members might not be able to give you the support you need in the beginning. But, someday in the near future, you will look back on this time and be amazed at how your family and extended familiy grew and developed during this time. Allow yourself time to grieve--your expectations, your anger, your fears, your dreams--and then, look forward to what is happening in each moment. There are lots of books on the topic of special needs children. Go to the library and browse the education/parenting section and check out a few. But, before you do, make sure you've had some time to deal with your emotions so you can really process what you're reading. You might want to do your reading while helping your husband deal with things. He will have a tough time, as well, but men tend to grieve differently than women, and the books might help you notice some things before reacting to them. Note: Some marriages really struggle when a child is diagnosed with a special need, so be encouraged and just love your family to the best of your ability. Ask your pediatrician if he can recommend a good support group in your area to help you both vent and process your emotions. If you cannot find one, search online. There are a few in the Washington metropolitan area. If you still cannot find one, email me offline and I'll send you some resources. I'll have to sift through my files. Final thought, the only thing perfect in life is unconditional love. All children (and adults) have challenges. To be human is to be flawed. And, when you live long enough you realize that nothing is impossible. Doctors can only diagnose, but that does not stop the human spirit. Teach your baby, love her, and give her the tools necessary to rise above any challenges she might have. Do not push beyond her ability, but do not allow yourself or her to be self-defeatists. Take time throughout this journey of parenthood to help her explore the world, her abilities, limitations, in spite of the challenges she might feel. She might (or might not) have to do some things differently, but she can still enjoy life, and you and your husband can enjoy parenthood. I wish you nothing but the best in life. And, having two special babies myself, I can tell you I could do nothing without prayer, faith, and love. Having special needs children has shown me how much I had to grow and learn about life.

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B.W.

answers from Washington DC on

I work with children with special needs and I have to say I love working with the children with Down Syndrome because they are the sweetest most loving kids :) I am a pediatric occupational therapist. I don't know if you were given information in the hospital about early intervention, but your daughter given the diagnosis will qualify for services, which will become more important the older she gets. Depending on what county you live in will depend on where you would get early intervention services. Feel free to contact me if you have questions.

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S.W.

answers from Washington DC on

A.,

Our son with Down Syndrome just turned 5 this June. And despite all the nice and good words of the other responders, it took us almost two years to get our lives back on track. But we got it back and everything is fine now.
The best advise I could give you is to contact the Down Syndrome Association of Northern Virgina (www.dsanv.org) or their counterparts in Maryland or DC. Here you will meet other parents having a lot of tips, advice and a shoulder to cry on if needed. I know the dsanv does a lot to support new parents.
If you would like to, feel free to contact me directly: [email protected]____.com week, we're moving out of the area, but this email adress is not going to change.

Good luck, accept your feelings and try to handle it your own way,

S.

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S.M.

answers from Washington DC on

A.: I know right now this probably knocked the wind out of you. But in time when you process this I hope you will go from devastated to joyful. I had a client before I had my son that was an early childhood development psychologist. I was being tested for Downs as I was 43 and it was in my family. This lady calmed my fears. She said that Downs Syndrome children are the most gentle and sweetest children ever. And that if the tests were positive to consider that a gift from God. I always remembered that. I hope that helps. Blessings, S.

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K.C.

answers from Washington DC on

I believe the author the last poster referred to is Emily Kingsley-- she's an author whose son, Jason, has Down Syndrome. Best of luck to you and your family.

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D.M.

answers from Seattle on

My daughter Stephanie who is Down's Syndrome was born in 1974. I was 23 years old when she was born. I didn't have a clue. Our pediatrician referred me to a support group. Mother's of Down's Infants. There I met mothers of all ages and ethic groups. We shared and supported one another. It was wonderful to know that I was not the only parent celebrating/grieving at the same time. Its been a wonderful journey. Stephanie is 36 yrs. old now. She can read and write at a 6th grade level. Is independent and as she so profoundly puts it "Mom, I have a life" so stop worrying about me all the time. Stephanie is the glue that holds our family together. She is a blessing and I am honored to be her Mother. Stephanie taught me how to be a mother and woman. You can check out the website for the National Down's Syndrome Association. Good info and planned seminars for parents and professionals. D. McRae

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C.G.

answers from Washington DC on

Hi A.,
I don't have any advice or wisdom on the subject but I just wanted to tell you I'm sorry about the diagnose. I know in time you will and your husband will accept this but I know it's got to be hard to think everything is fine durng the pregnancy and be thrown a curve ball. I'm sure there is some amount of time it will take to ajust. I have a 16 month old and being a new Mom is hard enough with no health conditions. I just wanted to encourage you to do the same thing any new mom should do. Get enough rest, eat healhty, and for god sake's don't forget to get out and have fun with your girlfriends from time to time. I wish you the best of luck in educating yourself on Down's Syndrome. Your qwest for information is such a positive sign and shows how much you love your child. You are an amazing mother. Good luck with your new little one!

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