does it get any easier

Terry - posted on 06/17/2010

Oh Honey,, let me first sent you a loving {{{{HUG}}}}, because You need it, and I did too, especially the first ten years of my son's life.
You asked if it gets easier. I can definitely say, things are always changing, you will always be fighting for everything she needs and yes, it does get easier, in that this is "her" life, it is "your" child, and you want her to have the best! In circumstances such as these, it is often the Mother standing side by side with another mother fighting for the rights of our children. Don't ever give up! You can make things happen through prayer and footwork, than prior to this, you never dreamed that "YOU" were the kind of personality who could "do this sort of thing" You find that you have the strength of goliath in a David body...and as he slew the giant in faith, you too shall reap great rewards and as time goes buy, things are always changing...The MOST IMPORTANT thing that NEVER changes, is YOUR LOVE FOR YOUR CHILD! This LOVE will keep you going through everything that comes your way!! It has for myself and my son. It has for hundreds of persons I know. It will be what GOD WANTS FOR HER and HE has immeasurable love for you and your child, and a plan for her life, that surpasses your wildest imagination! My son with CP,Autism,Severe Seizures,an AutoImmune Disease, and other serious issues, begins teaching Art to five to eight year old kids next week. He has a full time life skills aide that will be at his side. But, GOD made his dream come true. Without a diploma,with a reading level of a first grader at Nineteen, he loves kids (because he is one developmentally)and because he has a natural gift of working with other children and the patience of a saint. Time changes a lot of things. It isn't always good....but mostly it is miraculous! Love prayers and peace to you and yours!
Sincerely
Terilee

Sarah - posted on 06/13/2010

I think them not wanting to be touched is the hardest thing for me. My son is 2 1/2 years old and has sensory processing disorder, MERLD (language disorder), GERD, motor coordination disorder, and is being tested for autism. He HATES being touched and won't even allow me to comfort him when he gets hurt or is ill.
I'm with you and can only hope that someday it will get better. Most days I can handle everything pretty well, but some days are hard. Being at the park around other kids and parents is the worst part, I think.
The therapists have found a way for me to be able to hug him for short periods of time. If I count to 5, then he knows it will end. We worked up to that number, but perhaps if you tried it, it would work for you? It allows me to get some cuddling without him fighting it so much. ((Hugs))

Maurine - posted on 05/24/2010

Yes it does! My Son is now 23 and he now wants to be touched and rocked and kissed....but that was not how it started....he was tactile diffensive....we did a brushing him with a soft bristle brush which made him less sensitive. He became better and better and he now talks, using mostly 3 to 5 word sentences....He is a wonderful young man with a lot of love. I feel blessed to have him in my life

Erin - posted on 05/24/2010

Thank you Jessica.

Jessica - posted on 05/24/2010

Let it out every chance you get. On here, in public, who cares where...it's very important to get that emotion out whenever it starts to build. I constantly have a frog in my throat ...tears welling up...and my voice seems to sound funny and shaky...WHENEVER i talk about him ...let alone watch the littlest things he's doing....the things that I've learned to look for in Jake as progress...and esp when he's smiling at others. (He had no fine/ gross motor skills at first..severe sensory integration disorder, floppy, C.P.,cortical vison impairment,feeding tube,more reporting to come in my updated profile LOL) but Jake and I ..and a small circle around us...we've made the connection through therapies of all kinds...and CONSTANT love and reassurance..no matter what the issue(s) are...they change..sometimes often...but what doesnt change is their heart and soul is connected to you..through you...you are their limbs, voices, hope...and even if you may not be able to tell...YET....they're in there...as parents we just have to keep coming back each time we go over the edge of despair and sadness..loneliness...because they need us to fight. and that child is already tuned into you...you just have to find their particular voice..which could take years. (voice would be any communication) It sucks so bad to go to parties, the park, mall, anywhere...because the sadness, the differences... bring it home..
But even though there are times I still drive past instead of stopping...I started hoisting Jake on the slide...swinging w/ him/...allowing him in that environment even tho I didn't want to. He hated hated hated it..and me!...at first. Now Jake's in school all day (he's 3.5 now) and tolerates other children rather nicely now..for the most part. Definately focus on the possibilities. There are SOOO many things out there...devices, prosthetics, medications or new therapies,..groups in your area...that can help your child or loved one live their lives a little more how they'd see fit.
Jake.? the way he's going...I'd say he wants to be a soccer player, piano player, or an ultimate MMA fighter! HAHA
Jake is trying to stand up..assisted...communicating w/ noises and is actually SEEKING OUT things to touch. Has come to life a little more each day, week, month...
Complete opposite in some ways of the child I knew a year ago. But yes....the best thing you can do is feel your feelings...and NOT alone...and then you'll be more equipped to be that soldier. Ya know...We are chosen for this task because we are strong enough. Lord knows I'm searching daily...and I'm sad often, but use this as a place of hope.
:)
Good luck all of you!

Erin - posted on 05/24/2010

I have just found this site.. and well I'msitting here crying my eyes out reading about how you feel.
I feel like I am just starting out on this path that is flooded with tears, My little girl is 17 weeks old, and I am trying to come to terms that she too has problems, she seems to be unable to see, and we are waiting on a micro chromosome test. All my hopes and dreams feel like a distant memory now... I am so scared for her! Some days I just look after her and cry. I really hope it gets easier. Watching all the other babies in my coffee group is so very hard.

Juana - posted on 05/10/2010

My daughter is 7 with down syndrome and to this day I still cry. How can you not! I'm 40 and the thought of what will be of my daughter when I'm no longer around is so painful. I know I'm suppose to take it one day at a time but I cant help myself. I don't think it does anyone any good to keep that pain or fear bottled up , let it out any time you can.Its so frustrating to see my daughter struggle to do things we all take for granted.MY daughter is 7 and has the mentality of a 31/2 rear old.

Rhonda - posted on 04/29/2010

I know how you feel! My son is Autistic and didn't like to be held as a baby or either didn't want me to put him down! I discovered that as we began his therapies and worked with counselors that I learned to help him function and that was the most wonderful thing in the world! I cant tell you how long it will take, but you will stop crying and you will know that she was created for a specific purpose and the rest of the world will see the same beautiful child you see! Take care and God bless you and your daughter!!!