This explains in words what it's like to have a special needs child...Please read!!

Eileen - posted on 09/09/2009

I too love this "trip to Holland"..I arrived here 9 yrs ago with my son Matthew, "my gift from god"...He doesnt have a diagnosis yet but is multiply disabled. He doesnt talk and only learned to walk at the age of 5. He gets around very well but still has problems with his balance. He was born with low muscle tone. He wouldnt suck for 3 days and they had him in NICU for 8 days where he was on i.v. and o2 as well. When we took him his feeding was very poor. He had such a hard time swallowing and we had to put him on special formula as the regular stuff just came back up like a faucet. We never burped him as a child, had to keep him very still so it would stay down. He has no medical issues and eats regular food. He has been in a private school for 6 yrs now and is doing very well. He hugs alot and blows kisses..He is very affectionate with my family. The hard part about all this is doing it alone. I am now a single a parent and have been for 7 yrs. His father is involved very much in his life as we share custody. I wouldnt trade my son for all the "wine in italy"...God Bless all you moms out there who live in Holland...

Annette - posted on 09/08/2009

That is such an awsome way to tell that story, all of us on here can totally understand that. I would never change my daughter one bit, well maybe to stop telling me NO, LOL. I tried for ten years to have a child and the doctors never knew why I couldn't get pregnant so I gave up and my husband (ex now) and I had an appointment with an adoption agency. No and behold I found out I was pregnant a few days before the appointment so we never went. I didn't find out Jordyn had down syndrome until she was six weeks old, she looked just like her dad. I was totally fine with her I consider her my miracle child. I had two miscarriages, one before Jordyn and one after so she is my miracle. I love her with all my heart I wouldn't know what to do without her.



So I love your story, thank you for sharing it.



Annette

LeeAnn - posted on 08/28/2009

I loved this! I was so sad and disappointed when I found out all of the struggles my daughter would have. She is Autistic, and has DiGeorge Syndrome. I thought of all the things she wouldn't be able to do, or that she would struggle to do. As time went on, and goals were met, and exceeded, I learned a valuable lesson. God didn't punish my daughter or my family with this trial, he blessed us with it. I take nothing for granted with my kids now, I savor each moment I have with them. God blessed me with a rare gift, to see the world in a different way than I had expected to see it. I thought "Ok, I will get married, have babies, they will develop and grow normally, and play sports, participate in clubs at school, go to college, have good careers, and start thier own families. I never thought that my daughter would struggle to even be able to sit up on her own, or not crawl on her hands and knees until she was 14 months, or walk until after her 2nd birthday. I never imagined that she would have such a wide array of health issues, and not know where to start to help her. But I got through it, and we are doing wonderful. My daughter is a special and wonderful little girl. She teaches me new things everyday, and I am so grateful that God saw me fit enough to be her mommy.

Phyllis - posted on 08/28/2009

Hello to all the mother's who would've liked to have gone to Italy,a beautiful place I would imagine,but being in Holland has changed my life completely.I have a sweet little boy named Philip,who is the light of my life and I wouldn't change it for anything.He is in the 3rd.grade and doing well in school and his speech is amazing now.I knew something was wrong between the ages of 2-3.His speech regressed and he just made noises but I understood him when no one else could,he has autism and doing good.

Rhea - posted on 08/28/2009

I think that this is a wonderful story. I have made the trip to Italy and had a splendid time and really wanted to go back. We tried for 5 years and have been blessed with another boy. We had genetic testing done in utero and were told our tickets to Italy were secured but after landing we also were in Holland. We definitely continue to smell the tulips. Some days they are sweeter than others but they will never fade. Thanks for the story.

Samantha - posted on 08/28/2009

i wish i would of heard this when "we landed"

the good thing is we now stop to smell the tulips!!!

and i dont greive Italy any more everybody gets italy only the choosen few get holand!!!

Michelle - posted on 08/23/2009

I have never read this before, but have said something similar so often. My daughter will be 23 in a couple of weeks. It is so easy to get caught up on what should have been, that you forget to see what a wonderful gift God had given you. Don't get me wrong the trial are hard, and the day to day can be trying, but rewarding.

Patricia - posted on 08/22/2009

This is an awesome way to put it. Now that i have my trav-man i wouldnt want anything else. he is my miracle!

Samantha - posted on 08/22/2009

This brought tears to my eyes. My 2 y/o daughter has had so many challenges in her short life. We are yet to have a firm diagnosis for her problems, but am hoping to have that on Sept. 1st when we go, yet again, to Children's Hospital in Milwaukee. This post gives me hope that no matter what happens our stay in Holland will be a good one. I just wonder how I can divide my time when I have 2 in Italy and 1 in Holland. Thank you so much for sharing this.

Gretchen - posted on 08/21/2009

Thank you for posting this the last two years have been very hard for my family and especially for my twins. You see one child got to go to Italy but the other is in Holland and my journey seems to never end. This brought me to tears! God gave the best of both worlds and I now that I am blessed. It takes special people to raise a special child and I am thankful for all of you special parents too.

Carla - posted on 08/21/2009

Wow, I'm SO glad I've joined this group! This post is amazing and all these other posts/comments are so encouraging. I have 2 grandsons with various special needs who live with me and I too would not trade them for a million Italys. God gave us a 'SPECIAL' blessing with our boys.

Yvonne - posted on 08/19/2009

I have read this before it chokes me up, it is how I feel, every day can be a challenge! But then they do something which cofirms how beautiful they are!

Heidi - posted on 08/17/2009

i also recieved that story hey there im new here and have a downs syndrome son who is 3 and a half years old and it is a great way of explanning the situation

Deanna - posted on 08/15/2009

Quoting Erin:

I have read this before in a class I took called "Children with Special Needs." It is so true. I recently had a beautiful baby boy, whom turns out to have many special needs, mostly medical related. But I know what it's like now. I can't believe how much that class prepared me for what I have to face now.

I don't know what you mean by a class, do you mean SPE training? I am an SPE teacher.  I know that it was a shock to be in the situation of having a special needs baby after being in this field for over 10 years.  I now know what it's like on the other side of the table for those IEP meetings.  I feel the stabbing pain in my heart the first time I signed paperwork to put a label on him.  I have the anxiety and absolute fear in my body when I prepared myself to listen his first psych report.  I am, also, glad that my schooling prepared me for what I have to face now.   

Carolyn - posted on 08/14/2009

i understand fully and i pray that others don't judge just be thankful. i love the this

Beverly - posted on 08/14/2009

What a touching read! Thank you for posting it. I have learned from the scriptures as the apostle Paul stated...I have learned that whatever state I am in therewith to be content...

Bev

Danielle - posted on 08/13/2009

I love this story!! I am so thankful to have Taylor. He is 8 yrs. old and has learning disabilities which requires him to be in special education. He is one of the awesomest kids I know. He reminds me each day to just take your time and enjoy the "tulips" He's my "Hot Rod"

Michelle - posted on 08/12/2009

Loved your post. My son does not have any rare chromosome syndrome. He was paralized in a car accident in January. I was taking him and my 7 year old to the docter when I hit water in the road. I lost control of my car and hit a double cab truck pulling a horse trailer. My car came to a complete stop. Them was hit head on by a Semi truck. We are lucky to be here and I thank GOD everyday. Life has definely taken a detour. I was definely going to Italy only to be sent to Holland. He is a joy and I will take him anyway I can get him.

Susan - posted on 08/12/2009

We have been in Holland for 34 years and haven't regreted one day. We were told our son had Down's when he was 2 days old. The analogy is great and everyone needs (sounds like you all do) embrace the new destination and go with the flow. My motto is accept with no regrets.

Jill - posted on 08/12/2009

Thank you for posting. It couldn't be put any better and it is bringing tears to my eyes. My son is full of tulips and Rembrandts!!

Barbara - posted on 08/11/2009

that is so true my beautiful son is eight and has downs and aspergers. when he was born a friend gave me this poem and i truly do think that never a truer word was said

Jessica - posted on 08/11/2009

Brought tears to my eyes! Have been helping my 2 year old battle cancer for two years now. We are still fighting but he will be blind. I absolutely love the tulips but sometimes wonder what Italy would have been like.

Connie - posted on 08/11/2009

This is definitely a GREAT Analogy...You have explained it well.  And YES, you can't dwell on what should have been.  I myself have a son whom has been diagnosed with PDDNOS (Pervasive Developmental Disability Not Otherwise Specified, a form of Autism from the Autism Spectrum- High functioning Autism.  He can be very challenging at times. He for the first time told me he loved me when he was 5 years old and my eyes filled with tears. I  greatly appreciate all the help I get from family, friends and services through the community and state. I wouldn't be where I am today with all the love and support. :)

Carinda - posted on 08/10/2009

Quoting Erin:

I've never heard it before but it is amazing. I'm an adoptive-foster parent to 2 special needs children being born addicted to cocaine. So many people would make comments along the lines of "you purchased a ticket to Holland, it was your choice". I do what I do and love what I do but I never knew what to expect. I love them both and never would change a thing. I guess I got on a plane and never knew where I was going to land. Thanks so much for the insight!

Erin,  I totally relate to your post, as we too adopted our second son knowing that he was a drug baby, but you NEVER know what that means before you get them.  I don't mourn Italy though, as I feel certain we'll all get there eventually, as a family, and the trip will be even better because of the detours it took to get there. 

I heard a young man say once, "We all travel a road to get where we're going, some take the highway, and some of us take the back roads.  We'll eventually get there, it just may take us a little longer and via a different path."   He was a 16 year old with ADHD and other issues.  I've never forgotten that and my son is now 15.

God Bless all the Moms, Dads and Children who are on the different path.

Heidi - posted on 08/08/2009

My special needs daughter is now almost 21. I love her with all my heart. I can not tell you how many doc. said nothing was wrong, then as she got older oh well she is just slow a round about way of saying mild retardation then, thank God we found a wonderful doc. who listened and sent us to all the right places we found out she has cohens. there are only 100 other gen. cases in the world like her. she is my life and a true blessing from God! My God continue to bless you and your kids.

Charlaine - posted on 08/07/2009

Thank you for that. I have a daughter with VATERS syndrome and it has been a hard road.. but one I wouldnt trade for the world. I have had the oportunity through many many hospital visits and specialists to really get to know my child. I value this time because it is our special time together.

She is all growed up now and out on her own. I miss her. But yes I enjoyed my stay in Holland.

Nicole - posted on 08/06/2009

Thank you idk what i would do without her! My life is so much better with her in it!!

Christy - posted on 08/06/2009

Hannah's story is touching! Thanks for sharing!

Christy - posted on 08/06/2009

I love this, I have read it before!

Maureen - posted on 08/05/2009

Thank you - I needed that.

Jodi - posted on 08/05/2009

I Love it.

Nicole - posted on 08/03/2009

All of your post are so encouraging!! I never imagined when I posted this so many people would read it. I am in Unique support group and after reading all of the post decided to post Hannahs story on here, I'm so thankfull for her words cannot explain the joy i feel when I look in her eyes and she gives me a big hug and patts my back lol



Hannah’s Story



Hannah was born July 26, 2007 without much complication. Her blood sugar was a little low so they took her to the nursery to give her some formula. I tried to breastfeed Hannah but she was unable to latch on. She had reflux very bad and I put rice cereal in her bottles it helped but didn’t fix the problem. Hannah also wouldn’t suck from her bottles much so I would buy the nipples with the biggest holes. Hannah was also born with a large birthmark on the back of her head and her head is flat in the back. She is also allergic to polyester and would break out with eczema when she wore anything with polyester in it.



All of Hannah’s milestones were either reached late or on the late side of normal. At 17 months Hannah had her first seizure. She was playing beside me on the floor and just fell over and was unresponsive and limp. She had six altogether that day. I was told by her first neurologist that she didn’t have a seizure. A few weeks later I saw her family doctor who said that she was a happy healthy baby girl and that the seizure was probably a fluke that I shouldn’t worry. I left the doctors office feeling scared and confused thinking maybe one seizure could be a fluke but six?



I came home and the search began. I googled childhood seizures and read everything that looked even remotely close to my Hannah. The more I began to look at her as a whole I knew in my heart that something was wrong with my baby and I was going to find out what. I came across something called angelmans and on paper thought that fits. By this time Hannah had started having more seizures and her family doctor referred her to first steps to be evaluated. Hannah was a happy child all the time, she was 18 months at this point and still wasn’t walking, flat back of the head, explosive burst of laughing, and seizures that didn’t seem to fit a pattern. It all fit Hannah. Hannah’s family doctor decided not to see her anymore because I began to question things that weren’t done on previous check ups but before she got a new family doctor her old one agreed to refer her to a genetic doctor.



So I took Hannah to the Weisskopf evaluation center where she saw Dr. Gowans. He checked Hannah over for an hour and said that he didn’t think that she had angelmans but that he was going to run a FISH to check and he also wanted to run a CGH to check her other chromosomes. I told him about the seizures also and he felt that she was having them but wanted Hannah to see a cardiologist to rule out fainting spells. So we went to a lab gave her blood and waited.



Hannah’s new family doctor felt the same as her first family doctor that Hannah was a pretty happy baby girl that was just a little behind no big deal; he didn’t know why she had been referred to a genetic doctor. He finally ordered another EEG because it was going to be another month before the neurologist could get us back in the office. This EEG also came back normal but at home Hannah was still having seizures. I called the doctor and he said she had two EEG’s and they were both normal he didn’t think she was having seizures, I was just overreacting. Hannah is now seeing her third family doctor that listens and I feel we can trust. Hannah also saw a cardiologist who gave her heart a once over and said she was fine and that it sounded like seizures to him to.



At 19 months Hannah began to walk. She was very unsteady and held her hands in a high guard posture. She began seeing a PT who said she had her muscles in her neck were tight and her head was slightly turned to one side all the time and when she watched her walk she pointed out that one shoulder sat lower then the other, she didn’t bend her knees when she walked, she walked toe to heel not heel to toe. But when she checked the length of her legs one leg looked an inch shorter then the other but when she looked at the bone structure you could see that the bones in her legs where the same size but the muscles had been pulled up making the leg appear shorter. It was around this time that I spoke with Jessica from Weisskopf who told me that Hannah had a deletion in the short arm of her 16th chromosome. 16p11.2 to be exact. She said that they didn’t know a lot about this deletion yet but that as we find stuff out she would let me know and she sent me the pamphlet from Unique about 16p11.2.



Finally Hannah saw another neurologist who listened to everything I had to say about Hannah and said that it sounded like seizures to her but she wanted to be sure so she ordered a 23 hour video monitored EEG. Four months after her first seizure Hannah was diagnosed with frontal lobe epilepsy. It was a strange feeling relief finally they caught it but fear of this new diagnosis. They started Hannah on 2cc twice a day of Keppra. It worked well at first then Hannah started having tremors and more seizures and started to become very clumsy so they upped her to 3cc twice a day which worked for about five weeks then they upped her to 4cc twice a day. The neurologist also said that Hannah had low tone. And Hannah has sensory integration problems.



Hannah currently sees a developmental therapist, speech therapist, occupational therapist, and tomorrow will be her last day with the physical therapist. She doesn’t like her hair brushed or washed. She didn’t like her teeth being brushed but I recently got her an electric toothbrush and she like the vibration on her mouth and it is also helping to stimulate her senses I n her mouth. She is now starting to use her words a little more and is able to sign quite a few words. She overstuffs her mouth, her therapist believe this is to help her feel the food in her mouth. She is very friendly and doesn’t know a stranger. It doesn’t matter where I take her she will find at least one person to hug. She also loves to give kisses. She doesn’t feel certain types of pain. She has a brother that is exactly one year older then her who also has some sensory problems and a sister that is 12 years old without any medical problems. Hannah has been a blessing to me and her siblings. God knows what he is doing and he gave me Hannah so we could walk through the tulips in Holland because he knew I couldn’t go on my own.

Melanie - posted on 08/01/2009

I love this. I'm about to cry. I found out about John's Periventricular Leukomalacia (PVL) October 2008 after his pediatrician showed concern at his 15 month check up. The summer of 2008 we had his chordee and hypospadias fixed so we could have a perfectly "normal" child. I originally viewed the diagnosis as a death sentence, but with each passing day, John has made progress. I've had to relearn normalaty and I've also learned patience. We are very blessed that John's condition is mild--his hearing is wonderful, his vision is fine, he is otherwise in good health, he can eat and swallow, he has great cognative skills--, but we also know we have a long road ahead. I still grieve from time to time about this dream I had for my child, but dreams always change--even with "normal" children. Thank you for posting this. I'd love to go to Italy, but I wouldn't trade the trip to Holland for the world!

Lisa - posted on 07/31/2009

very beautiful!! I have a almost 6 month old. that was diagnosed at 2 days old with congenital heart defect... so since she was 2 days old she has already had more EKGs than most 80 year olds.... thanks for posting that it puts my heart to ease.... thanks again

Phyllis - posted on 07/31/2009

Thank you Mary P.,That post brought tears to my eyes.Again i say thank you,Phyllis

Mary - posted on 07/31/2009

I love the "Welcome To Holland" story. I feel exactly the way this is described when I had my daughter 4 yrs ago. She was born with a severe heart defect. I had to learn being a parent all over again.

Heidi - posted on 07/30/2009

That was just wonderful. I thank God for my Ashley, she has opened my eyes in many ways. She has cohen syndrome and is now 20 years old. She is still alot of work but worth it! My God bless you.

Autumn - posted on 07/29/2009

This is beautiful and very well put! My son was diagnosed with Cerebral Palsy when he was 2 yrs. We arrived in "Holland for 4 1/2 yrs ago...We are blessed with every milestone our children reach while others take it for granted. Our children make us the special mothers that we are."Holland" is a beautiful place and we love many things here. Instead of "Italy" where its fast passed, its slower and it brings us closer together.. I love you Gage. xoxo

Andrea - posted on 07/28/2009

i cried!!! i never heard this before. i think this is beautiful!! makes you think of things differently.

Erin - posted on 07/28/2009

I've never heard it before but it is amazing. I'm an adoptive-foster parent to 2 special needs children being born addicted to cocaine. So many people would make comments along the lines of "you purchased a ticket to Holland, it was your choice". I do what I do and love what I do but I never knew what to expect. I love them both and never would change a thing. I guess I got on a plane and never knew where I was going to land. Thanks so much for the insight!

Debra - posted on 07/28/2009

I love this story. I also have read a story about God picking special parents for His special angel.



My daughter has a rare chromosome syndrom, she has an unbalanced chromosonal translocation of the 14th & 21st chromosomes recipical. What is your daughters? Are you a member of Unique?



Debra Masters

Paula - posted on 07/28/2009

Thank you for posting this. I have never heard this one before.

Tegwen - posted on 07/28/2009

whow i have never hear this on before but this is a great way of looking at the whole situation of having a child with special needs! I too like a lot of you ended up in Holland when my son ( my Tulip) who is now 15 was diagnosed with Coffin-Lowry syndrome ( yes its rare & it is a genetic Syndrome) He was 5 years old when we got the diagnosis so fo us our plane went around a few times before it landed in holland and it tried to land in many places before its final destination! but our tulip is so special i would not trade him for a million italy's he has showed us all so much he has such a specialness about him that impacts all that meet him! Due to his condition he has not got a lot of speech but yet he is able to make himself understood most of the time! It is especialy a blessing to watch him comunicate with his older sister and to see the way thay relate to each other it is so special. I Give thanks to GOD every day for choosing us for his parents

Jennifer - posted on 07/28/2009

My Noah was 6 months old before I really started to see him as a blessing and not just my cross to bear. Thanks for the reminder.

Suzie - posted on 07/28/2009

I read this 10 years ago when I found out my son was deaf and it is the BEST way to explain what it is like :-)

Karen - posted on 07/28/2009

I carry this story in my folder full of appt letters and reports from Alfie's doctors. It reminds me every time I open it (which is quite often) of how very lucky we are to have gone somewhere different. Alfie has a midline brain defect and developmental delays, but he is the most wonderful thing in my life and I wouldn't change him for the world.

Terry - posted on 07/27/2009

I loved that. it is the first time I have heard it that way! Thank you!! I have a daughter Spirit who just turned 10 in July. Took us from age 20 months till she was 5 before we got answers on what was truly going on...so my trip was bumping but I wouldn't trade a day with her! She has CAS (childhood Apraxia of Speech) and SID. This trip to Holland has showed me things I would never have seen in Italy! I am thankful for the special angel God has belssed me with for however long she is with us :)

Tuesday - posted on 07/27/2009

That was terrific, I think I'll print that out.
Thanks for sharing.

Patti - posted on 07/27/2009

i never heard it before....but good way of explaning it! i'am just blessed with my daughter adriana..she has oral facial digital syndrome a rare syndrome..i wouldnt change my life with her!!!

Tanya - posted on 07/27/2009

this is true for most people, but for me a new that my flight plans might change. i have two children with fragile x syndrom. i have a sister and a first cousin with the same syndrom. So i was ready for any change's. I thank god everyday for them. I have 5 kids I am blessed!!