Down Syndrome Support Group

Hi Katie,
I have come to the conclusion that no one will ever understand what we go through to raise our precious boys unless they walk a mile in our shoes. My sister in law is moving from NJ to NC and will have a beautiful huge home. She made the comment on "when we come to visit" Do you think I am going to drive two days with Brendan in the car or worst yet "fly" with him. I cannot even control him at the movies or shopping. He flew once when he was 5 but I could hold him and control him. He freaked out on the plane both ways and getting him on every ride at Disney. He would calm down once he realized it was "fun". Plus Brendan is so "busy" I don't feel safe unless we are home. I almost rented a cabin at the Cape this year but one day at the Beach with him made me realize what a mistake that would of been. He ran to the ocean and just kept going deeper and deeper. So quickly that I had to go in after him with my clothes on. I was in the water struggling with him to get him in a safe spot and a strong man offered to help me get him out. The rest of the time was miserable because I had to get him playing in the sand far from the water and let my daughter go down to the ocean by herself and try to watch her from a distance. I would love to take him back to Disney someday but unless he becomes more compliant I cannot see that happening.

You are right in mentioning to your sister about being too easy on your nephew. I have always encouraged my kids to go to school with slight issues, iffy on a sore throat from allergies, runny nose and cough etc. I don't send them in when they have a fever or definated illness but I don't want them to grow up thinking anything is an excuse not to go to work. This is the reason I will encourage them to go to school and give it a try, if they need to they can call me. They never come home, it is usually just trying to get the day off. Seven weeks of missed school is a lot, I am surprised the school isn't calling her.

You should suggest she watch Sam for a weekend, that you could really use a break.

That might solve the her opinion of a "breeze". In a sense our children are easier. They are always happy and content with what you give them. They don't talk back. IF it weren't for the diapers and the non compliant issues, life would be great. I just want him to enjoy what other kids enjoy.

I agree with Bontom let her watch Sam for a while..No doubt she will change her tune very quickly :) I also agree that people don't get it at all..

However I have to say I don't necessarily get it all at this moment either. I've only had to experience less than two years of it so far..And sometimes hearing the struggles you two face is a little frightening. I often wonder if that will be me in a few years.. And I also find myself thinking that gosh I can't do this, it seems all too much. I think extremely highly of you both and I hope god will grant me the inner strength that the two of you have.

Katie the problem is definately NOT with you!! Don't let the guilt that us mom's carry around with us get to you. You are an awesome mom and are a fantastic advocate for your boy..

Hi Katie,
I'm with Bonnie, unless they've been there, no one knows what it's like raising our children. Don't ever think for one moment that the problem is with you. I have never met someone so devoted and full of love and worry for their child. I come to you for advice so often that I come to depend on your knowledge for many topics. You have done so much research on DS so that you can give Sam the best life you can. Please don't doubt yourself that you're not doing it right.
Sure there are days that I want to throw in the towel and give up, but then I get that sweet smile from Meg and some how she always knows when I need a hug.
Hugs!
Karen

I know how you feel....my SIL once said..."send your kids to my house for a week and I will fix them"

But on the other side I wouldnt last a week with her kids.....there all girls.....you cant walk in someone elses shoes....you just cant.....no one will ever know what it is like from day one to now.....what we have gone through....how hard our kiddos have worked.....and what they work through.....

Emmas not in school yet but we have missed therapy apts....luckily they understand that weak immune system kids need a little more of a break on schedualing....

This is an eye roller for me.....obvioulsy she is too heart set on being cool mom than responsible mom....

I Hate mornings....I would rather see my kids tardy everyday than get up and take them....BUT I DO IT.....even when they cry and pout and scream....NO FEVER.....NO GREEN RUNNY NOSE....no reason to stay home.....

The school will bite her for this later....just sit back and wait for it....and she has no excuse....

Thanks for the support . The thing is her son is in a boarding school on a scholarship. Its the best school in the country and the fees alone are a small fortune. She is just wasting this wonderful opportunity because her son wants to be at home with his friends.
My sister would never take Sam not even for a minute. She has never babysat for him not once since he was born. I would not trust her to look after him anyway. Sam's issues are not all Downs related. Its his deafness and his sensory issues that cause most of the problems a lot of the time. Anyway I just bite my tongue and walked away !!! I had her daughter nad my other sisters son in my house constantly. I was like "rent a family for them" yet no one ever takes Sam. I dont even ask or expect they have no idea about Sam and never will , Katie xx

Katie,
I had the oppturnity to see Meg's teacher last night and she gave me this essay. I'd like to share it with everyone. I know its long, but I thought that it was fitting.

I Am The Child
(author unknown)

I am the child who cannot talk.
You often pity me, I see it in your eyes.
You wonder how much I am aware of--I see that as well.
I am aware of much, whether you are happy or sad or fearful,
patient or impatient, full of love and desire, or if you are just
doing your duty by me.
I marvel at your frustration, knowing mine to be far greater,
for I cannot express myself or my needs as you do.

You cannot conceive my isolation, so complete it is at times.
I do not gift you with clever conversation, cute remarks to be laughed over and repeated.
I do not give you answers to your everyday questions,
responses over my well-being, sharing my needs, or
comments about the world about me.

I do not give you rewards as defined by the world's
standards--great strides in development that you can
credit yourself; I do not give you understanding as you
know it.
What I give you is so much more valuable--I give you instead
opportunities.
Opportunities to discover the depth of your character, not mine;
the depth of your love, your commitment, your patience,
your abilities; the opportunity to explore your spirit more
deeply than you imagined possible.
I drive you further than you would ever go on your own, working
harder, seeking answers to your many questions with no
answers.
I am the child who cannot talk.

I am the child who is mentally impaired.
I don't learn easily, if you judge me by the world's
measuring stick, what I do know is infinite joy in simple
things. I am not burdened as you are with the strife's and
conflicts of a more complicated life.
My gift to you is to grant you the freedom to enjoy things
as a child, to teach you how much your arms around me
mean, to give you love. I give you the gift of simplicity.
I am the child who is mentally impaired.

I am the disabled child.
I am your teacher. If you allow me.
I will teach you what is really important in life.
I will give you and teach you unconditional love.
I gift you with my innocent trust, my dependency upon you.
I teach you about how precious this life is and about taking
things for granted.
I teach you about forgetting your own needs and desires
and dreams.
I teach you giving.
Most of all I teach you hope and faith.
I am the disable child.

Katie,
Sam is sooo lucky to have you. Your an amazing mom and so informed. As I said before I have learned so much from you and Michael is only 7!
I don't think anyone can understand if there not walking in your shoes. We have had some behavior problems with Michael in school the last two weeks and Its all me to deal with it. everyone else sees a cute little face and says oh I can't see him doing that.
I just remind myself that when you look at all those front doors on the street, you really don't know what's going on in the inside. I think we might be the lucky ones.

Karen, I know you added the essay over a month ago to this post but I just read it now. Oh my gosh. That's beautiful. Of course, I'm crying as I type. That's so typical of me. The words are so true though. No one will ever "get it" if they don't walk in our shoes for a day......Katie, don't ever doubt yourself for a minute. Like other moms out here, I look to you for advice all the time too. I have my "what would Katie do" moments and come out here to find out. I have often spoke of you to other friends. I tell them I know a wonderful mom in Ireland that has allot of knowledge and I turn to her all the time. Thank goodness for you and for the rest of the moms out here with all the info you all have.

i have 5 kids 4 without d.s and my littlest with d.s. 3 are grown and shy is 3 and tt is 19 months. with or without d.s kids are kids and will try to get away with whatever they can or whatever you will let them get away with. this is why that boy has missed 7 weeks of school his mom lets him get away with it but in the end it will be him who suffers not her. as for it being harder with a child with a disablity well sometimes yes sometimes no. i have been to the hospital more times with my kids without d.s then with my little one with d.s. my mom wonders how i do it caz both my little ones keep me on my toes lol. but being a mom and dad is hard no matter what and add a disbailty on top of that and it becomes even harder caz we have more things to watch out for and we worrie about diffdent things then we do with our kids that don,t have d.s or anything elas. yes i have been there and done that being told oh i had a hole in my heart and it did,nt borther me but what most people don,t understand is our kids have a higher risk of having trouble with everything from a-z and being nomarl as one might put it we don,t carrie such a high risk so no they will never understand and you will never make them understand the pain and the heartack and the worrie and the anger that we go thought from day to day. BUT THEY ALSO WILL NEVER UNDERSTAND THE JOY IN WATCHING OUR KIDS DO SOMETHING THAT WE WERE TOLD THAT THEY WOULD NEVER DO OR THE LOVE IN THEIR EYES WHEN THEY LOOK AT US OR THE JOY IN HAVING THEM LITTLE A LITTLE BIT LONGER THEN NORMAL. my son never stops amazing me with the things he does everyday of course he wants to keep up with his sister lol. i love all my kids the same but tt adds a little more to my life caz of the d.s and with out it he would just not be tt. so let her say what she wants caz in our hearts we know we got the better end of the deal then they have.