Anyone out there with a special needs child?

Kim - posted on 12/10/2008 ( 54 moms have responded )

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My youngest has an intestinal disease called Hirschsprungs Disease.

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Nicole - posted on 02/13/2009

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The poem about Holland/Italy was given to me very early on after my son was born at 28 weeks, weighing in at 2lbs 14oz. The arrival of a premmie and the world that followed was something I did not handle well at all. But after time and diagnoses of heart defects, Cerebral Palsy, eye problems, ear problems, digestion problems...something happened. I broke and Jesus helped me, thru my husband. I developed severe post partum depression partially chemical and partially situational caused.

Noah is now 4 years old. He has had numerous surgeries, goes to therapy PT/OT/SLP weeky. I am recovered from the depression. I learned who my true friends were during that time. I am also a completely different person than I was before Noah. I have gained patience, faith, instincts, gentleness, empathy for others...sooo many traits that I don't think I would have developed to this degree if I had gone on the trip to Holland vs Italy. People ask us how we do it? That is a complex answer. Jesus Christ is the primary answer...He facilitates support from family, friends, services we qualify for, great nurses in hospital, great docters everything we need to cope with the world of special needs children. He gives peace.

Noah touches people all by himself, he has the charm of no one else I know. He is the most caring, sensitive, gentle, loving child I have ever met. What 3 year old asks you about your day and won't stop asking until you tell him?

The pain of the loss of the dream did go away for me after acknowledging it and grieving it b/c the reality ended up being so much more than I could have ever imagined.

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Samantha - posted on 04/25/2012

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i have a child who is special needs we aren't sure what he has yet. we know he has a learning disablities. he has to go to special needs preschool.

Michele - posted on 05/16/2009

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hi ya my daughter has downs syndrome and hirschprungs disease, she is nearly 4 now, but it was a really worrying time when she was borm with her operations. but since she has come a long way and doing great :)

Deborah - posted on 02/13/2009

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Hello Kim,
I have 2 children both were DX special needs. Shannon and I are very familiar with CHOP lol. We had the pleasure of being residents there for 6 weeks a few yrs back when she under went a 12 hour back surgery < this was shortly after she had a full shunt revision there > < In simple terms she had water on the brain at birth, first we were told to bury her and then we were told she would never walk again. I am very proud to say at the age of 25 she escorted me < her mother > lol down the aisle on Sept. 14th 2008. I have also enclosed a Poem that had been passed onto me many years ago and I have kept close to my heart.
"Welcome to Holland"

By Emily Perl Kingsley, 1987. All rights reserved.

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very very significant loss. But...if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Jenn - posted on 02/13/2009

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My daughter has congenital heart defect, well, a couple of them.  We've had two ooen heart surgeries and hope for at least two more ot finish her repair.  At first we didn't know what to do and how to handle things.  We were told that she would probably not make it.  She's 20 months old now and quite the little fighter.  She has developmental delays, physically she is like a 9-10 month old.  We deal with it by looking for support from other families with the special needs child, and by spending time with the friends we have who can deal with the occasional weird moment (like when I have to stuff her NG tube back in or she has a desaturation episode and turns blue).   We also use whatever services we qualify for, such as a visiting teacher to help with Kate's development and PT/OT to help her motor skills.  Some of these people have become good friends too. 

Momof4-wifeof1 - posted on 02/13/2009

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I am a mom of 4, each with their own diagnosis. My eldest has Bipolar, next is learning difficulties, then ADHD, possible FAS (she is an adopted child, I did not drink during pregnancy) and last is my youngest with Autism and severe developmental delay.

so full house,, but filled with tons of love!

Alicia - posted on 02/13/2009

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Quoting Tamara:

ALICIA, my boy was born on the 4th July (twins actually) and 1 was born with Hirschsprungs too. He had his pull thu when he was 4 weeks old (diagnosed 4 days after birth) How exciting is that first poo!!!!! Hope all is well.



oh yes....you should of heard his fart the other night lol...woke us up. Jarod thought it was me lol..but I had asked him what was that before he had the chance to accuse me lol..oh bless his little chubbyness

Janel - posted on 02/11/2009

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Tonya,



I saw that your son has Erb's Palsy too. Sometimes our son seems to be in pain and we don't know why but no one has ever told us he could be having nerve/muscle pain. But we sometimes wonder about it. Also, I saw that you said that your son can never play any contact sports due to a risk of reinjury. This also was never mentioned to us. I am so glad I saw you post about this bc this is something I want to check out. I would say our son has about 90% function too. The neurosurgeon said it is unlikely he will get it 100%. He doesn't have suppination w/ that hand and can't clap w/ it. He brings the other hand to it when he claps.

[deleted account]

ALICIA, my boy was born on the 4th July (twins actually) and 1 was born with Hirschsprungs too. He had his pull thu when he was 4 weeks old (diagnosed 4 days after birth) How exciting is that first poo!!!!! Hope all is well.

Janel - posted on 02/11/2009

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My son was born w/ Erb's Palsy. The worst part is it could have been avoided. I begged and begged for a c-section and was screamed at and refused one. I was induced bc of his size and just knew once I was dilated that he wasn't going to fit. Sure enough he got stuck. He didn't move his arm for the 1st 4 months but we were blessed w/ a miracle and haven't needed surgery. He just hast OT every other week now. He will never be 100% but to someone who doesn't know about the injury they probably wouldn't notice a difference on him. We were just referred to Orthopedics today so we will see if there is anything they can do but his Neurosurgeon thinks they will say there is nothing they can do. I am not sure we want to do surgery anyway but we would love to hear their opinion. My son is only 15 months old now.

Sonya - posted on 02/11/2009

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well i have step daughter who has austizm and a son whom has hemophilia a and adhd

Sonya - posted on 02/11/2009

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well i have step daughter who has austizm and a son whom has hemophilia a and adhd

Alicia - posted on 02/11/2009

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Quoting Kim:

Anyone out there with a special needs child?

My youngest has an intestinal disease called Hirschsprungs Disease.



My 7 month old son has hirschsprungs disease too... He was born on the 4th of July 2008 and was diagnosed 3 1/2 weeks later. He had a colostomy for 6 months and had his Saure surgery done on the 21st of Jan this year. A Saure procedure is a pull-through. Hes doing really well and he rolled over a couple of days after he pooed for the first time!



 





 

Donna - posted on 01/23/2009

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I have a 12 year old boy with William's syndrome (with autistic tendencies). He was diagnosed at 18 months...so we've been dealing with it for some time.

Ema - posted on 01/22/2009

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One of my twins has SBS (short bowel syndrome), he only has 20% of his small intestine. He was a premature baby and operated on when he was three days old. His chances of survival were very low, but he beat them all. He's had three surgeries, had a broviac catheter for three months. As he liked to eat, he surprised all of his doctors and he didn't need food through the vein. We had some problems with solids and getting him used that his parents are not gonna leave him when he came home, but that is behind us. there are some limits and he needs constant checks as his intestines do not absorb everything and he needs additives but all in all both him and his brother are healthy two year olds.

[deleted account]

my son has 'visual perception disorder' both him and my daughter are hyper-mobile aswell. Its tough but reading stories on here i realize ive it pretty easy!

Michelle - posted on 01/21/2009

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My oldest son was born with Gastroschisis, and now ADHD. My middle is PDD-NOS.




Danielle - posted on 01/20/2009

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Hello Ladies, I have a 5.5 year old with apraxia and some low tone (primarily in his hands). He has been in SLP and OT for about 3.5 years, successfully. He will continue both of these for a very long time. He is happy, relatively well adjusted and has overcome A LOT. Patience, kindness, understanding and most importantly fun. Self confidence has always been out number one goal and he is doing great. We are constantly advocating, challenging his care givers, questioning and educating. We follow our instincts at every turn. It is scary. It is hard. It can be lonely; but look how many of us are here!! : )

[deleted account]

Im in Australia.

Joseph is doing great now. Had a bit of constipation when we first started solids but all seems to have settled down. He had his surgery 5 months ago now. How long ago did your child have surgery and how much did they remove?

Tonya - posted on 01/20/2009

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Hunter actually has about 90% use of his arm now (from less than 10% at 6 months of age) thanks to a brilliant surgeon in Houston, TX named Dr. Nath.  He can swim, rock climb, etc... (and just started skiing this winter!) now with a little modification where before he could not even hold a ball with 2 hands.  He does, however, require continued therapy and as I mentioned, he deals with nerve pain and muscle pain on an ongoing basis.  There will be a few things he will never be able to do such as football, ice hockey, wrestling, etc... as the risk of re-injury is just too great and would likely cause total loss of the use of his arm.  For that reason, we have tried to encourage independent sports rather than team sports: less chance of re-injury.  He is a great kid, though and we are truly blessed to have him!

Kim - posted on 01/20/2009

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Hi Tamara.  How is your son managing with his Birschsprungs?  Our son Jacob is doing very well.  We go to CHOP on Feb 9th for a check up.  Not sure what will follow that visit though.  They haven't wanted to give us a time table for anything as of yet.  Don't want to get our hopes up for anything.  Where do you live?  We're in Southern , New Jersey.

Kim - posted on 01/20/2009

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Oh my Tonya.  What a touhgt little man you have there.  How much usage does he have in his left arm?  You all are in my thoughts and prayers.

Jennifer - posted on 01/20/2009

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I have a beautiful 14 yr. old daughter with C. Palsey. She has overcome alot and been through a lot but she is perfect to me with all her inperfections!

Tonya - posted on 01/11/2009

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My son was injured at birth and has what is called Brachial Plexus Palsy (also called Erbs Palsy) and has a partially paralyzed left arm.  He has had 2 surgeries, numerous CT and MRI scans and 4 years of OT.  He is doing remarkably well and is a tough little guy.  He will likely not have any more surgeries, but will continue some form of OT for quite some time and will deal with nerve pain and other issues the rest of his life as well as diminished use of it. 

[deleted account]

Is there any history in either you or your husbands. Because for example, My brother was born with it and so was I. ALso my father has a cousin that had a son born like that too.. .. it was 50/50 with us. 



Are you doing well with the bags and everything?.. how old is your baby now?

Kim - posted on 01/08/2009

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My husband and I were totally NOT expecthing this.  We really had no idea until Jacob was almost a few days old.  THe gene must be in either myself or my husband but we're nto sure who until we have the testing done.  Not sure if I'm ready for that.

[deleted account]

WHen my son was in the NICU... they didnt feed him till after his surgery which was a month after he was born.. he didnt like that at all.. but once they fed him he just hasnt stopped.. so i have a 23lb 6 months old.. or so

[deleted account]

north of houston.. but we go to the texas childrens hospital in the medical center which is about an hour away.



 



i wasnt prepared for this but it was expected...



In our case its in our genes.. well my genes. .. goes along with the RET gene and MEN2 which is a form of thyroid cancer that also runs in our family.. well my family .. from my dads side.. both hirschsprungs and MEN2.. i have to have both of my sons tested at 5.. and if positive have their thyroids remove.. as I have had it removed as well

Jenn - posted on 01/08/2009

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My son has autism and expressive/receptive language disorder. He's 2 and half years old.

Francine - posted on 01/07/2009

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Hi Kim...I have a developmentally delayed son who is now almost 16 ...the best advice I can give you is be patient and give your child the most love and affection you can ...ALL The best !!

Kim - posted on 01/07/2009

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Hello Sylvia.  In Jacob's case his entire large intestine didn't have the nerve endings that it needs to help pass along stool.  He was 2  1/2 days old and had to taken away from me and rushed to C.H.O.P.  And at 5 days he had his first of 2 or 3 surgeries.  We take him for a check up in early February.  We'll find out more at that time regaridn the next step that the surgeon is going to take. 



Where at in Texas do you live?  My husband has family that lives in Alvin, TX.

[deleted account]

hirschsprungs has to do with the muscles that are underdeveloped in the colon. They can now do a what is called a pull through--something they didnt do when i was born-- where there is no need for a bag.. i dont know how it is in philadelphia but here in the texas childrens hospital that is what thye do.. but my son developed a clot and fluid collected in around his heart.. so they had to do an emergency heart surgery and so we had to have the colostomy..



 



if you have any questions feel free to ask

[deleted account]

How much do you know about Hirschsprungs? My son is 6 months old and was diagnosed a week after birth. But I was born with it and so was my older brother.

Marissa - posted on 12/11/2008

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I have 4 children. One is being testing for a speech/language disorder right now and another child was labeled as having "global delays". They think he is on the autism spectrum however he's only 15 months and from what I understand is too young to have the definate label on him.

Kim - posted on 12/10/2008

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Jacob was born on May 12th seemingly healthy. Little did we know what was in store for our little one. May 14th he was rushed up to Childrens Hospital of Philadelphia with what the dr's down here though "may" be Hirschspungs Disease. May 16th our Jacob had his first of 3 or 4 surgeries. What it is, is that your intestines are supposed to have nerve endings to help you pass stool. His entire large intestine did not have that. They ended up having to disconnect his large intestine from his rectum and small intestine. They pulled the small intestine up thru his belly and for now he poops into a bag attached to his belly.

User - posted on 12/10/2008

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i do not know where you are located but there is a web sight that may help you as a resource...nathanielshope.org.

Kim - posted on 12/10/2008

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Before my husband and I got pregnant for the 2nd time we would always see proud mom's & dad's with their kids with special needs and think, I wonder what we would do if we had a child with a special need. Now we know.

Verena - posted on 12/10/2008

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Yeah i know how that is, when there have it since birth, both of mine have the bartter's syndrome (gen defect= Kidney dissease) The kids craping after salty food and spicy food. And my oldest she starts to stop eating, so its really less what she is eating.... so we all have our bundle to cary, but that makes the kids soo special and you love them more and more.....

User - posted on 12/10/2008

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Hazel is doing great after surgery. They corrected 2 problems with her heart but she still could potentially need one more surgery if she starts showing signs of heart failure. She has some other health problems to, but we are just watching them, if you looked at her you wouldn't know she's sick. Being that Hazel is so young we have mainly had to deal the the health problems her syndrome brings. She will and does have developmental delays, she's 13 months but developmentally more like a 8-9 months old. We have PT, OT and an early intervention teacher through our school district and we see speech through out childrens hosp.

Kristy - posted on 12/10/2008

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I have a son with ADHD. I realize in the special needs spectrum, I've got it pretty easy. But I wanted to share our primary method of dealing with it, because it's helpful for a lot of other special needs as well - especially any on the greater Autism spectrum - the Feingold Program. It's a program that eliminates all artificial colors, artificial flavors and three specific preservatives from his diet and personal care products (since small amounts are absorbed through skin and gums). Where he had hardly any impulse control before the program, he's now almost "normal" - to the point where his teacher and special ed teacher were questioning whether he even needs an IEP anymore. For more info on the Feingold Program, visit www.feingold.org.

Verena - posted on 12/10/2008

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We also do have a lot of dr appointments and speechtherapy.......but we do have a lot support......even that we dont have family here in canada.........

Verena - posted on 12/10/2008

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You get used to it, even if you fall tired into bed every night, and be awake by every noise......in my case, its because there cant hear and there peee a lot..............

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