[MB80sgirl]

I came across this forum & I'm hoping there's somebody who can help me deal with all my feelings & my child's special needs. We adopted from Haiti & thought we were getting a healthy baby without special needs. We got her about 10 months ago when she was 16 months old. She was very delayed, which didnt concern us at the time because we were told all Haitian babies were behind by American standards & also she'd been a 2 lb preemie who had been in an orphanage. We were told she'd catch up quickly with love & nutrition. Now at the age of 27 months she does not crawl or walk & barely sits. She can't feed herself at all, but will bring toys to her mouth. She makes sounds but has no meaningful language & does not say "mama" or "dada." She has PT, OT, & ST a total of 4 times a week & is making very slow progress. In addition to the therapy I work with her every day on skills, read to her daily, & massage her body. She has uncoordinated, jerky movements described as dystonic, ataxic, & athetoid. She's also had many medical tests done to try to figure out what's wrong with her. Her MRI, swallow test, heart ultrasound, chromosome tests, & metabolic tests all came back negative or normal. A developmental pediatrician who had 35 yrs experience & had seen many internationally adopted kids said he'd never seen anything like this before. Her motor skills are at about a 6-7 month level, her speech is at about a 10 month level, & her cognitive skills were tested at about a 10 month level. Do kids with delays like this ever catch up? I thought it was promising that her cognitive skills were at how long she's been here, if she keeps going at that rate she'd just be about 1 1/2 years behind & eventually be almost normal. I dont know how likely that is though. The psychologist said only 20% of globally delayed 2-year-olds catch up or come close, the rest are diagnosed as retarded when they're 5. I'm devastated & I dont know what to do. I love my daughter but this has been heartbreaking. I did not want a handicapped child & thought we were doing all the right things to ensure we didnt get one. I know there are no guarantees but the agency could have been more honest with us about the risks associated with a 2 lb preemie. I remember being unsure about accepting the referral, but the agency said she was ok & gaining weight, that she had a great personality & would catch up quickly once she got home. She was 2 months old at the time & 6 lbs so we said yes. Now I'm looking back & thinking how stupid it was to believe that a 2 lb baby from a 3rd world country would be ok. It was a long process & the agency gave us updates along the way. They said she was smiling & happy & making sounds & that everyone wanted to adopt her because she was so cute. They neglected to mention that she wasnt reaching her milestones that many of the other babies in the same orphanage were. After our file was in Haiti & it was too late to back out a representative from the orphanage told us she had a large umbilical hernia. They had told the agency but the agency hadnt told us. The representative also told us that at 9 months she was not sitting or crawling, but not to be concerned because Haitian babies do things later & also she was a preemie, plus the nannies were afraid to move her because of the hernia. We figured she knew what she was talking about so we believed her. Looking back, I wish I'd demanded to be given a different referral. I was so in love with finally getting a baby that I ignored the obvious warning signs that something wasnt right, & now I have an almost 2 1/2 year old who is still like a baby & may never walk or talk & is possibly retarded. It's been a huge strain financially (including the hernia operation which turned out to be an omphalocele, which is more serious than a regular umbilical hernia & is often a sign of more serious birth defects, which again we werent told) & also a strain on my marriage. My husband refuses to believe there's anything wrong with her & that she just needs more time to catch up. I wish I could just hope he was right but I waited 6 months for her to start catching up before I let myself believe there was something wrong, & something is very, very wrong. I feel the agency lied to us & to be completely honest I wish I could trade her in for what I wanted. I was in no way expecting a "perfect" baby & I knew she'd be delayed at first but I never dreamed it would be this severe & she would not catch up. I really fear for her future, how she'll grow up & whether she'll ever have a normal life.No one else who adopted from this orphanage has had a problem like this. I've talked to the orphanage rep & the agency & they both said no one could have predicted this & God wanted me to have this child. I did not want a special needs child & I'm angry & resentful, & I regret adopting her. I feel like a failure as a parent. I know she's my child & I cant give her back, & if I did we'd probably never be able to adopt again. Also, my husband would never speak to me again if I tried to disrupt the adoption. And I do love her a lot & I know she deserves parents who love her unconditionally as she is. She's a beautiful little girl who's always smiling & tries so hard to succeed. I just feel so cheated. It was my dream to have a daughter & I worked for 2 years at a minimum wage job with a verbally abusive boss to pay for the adoption. I know when you have a baby you dont get to choose but I feel when you adopt & have to spend all that money you should have some control over what you get & the agency knew we wanted a healthy, normal baby, so they should have given us the option of changing our minds when they found out otherwise (If it was true that everyone wanted to adopt her, they could have easily found her a more suitable family.). We signed a release that all problems & special needs that were discovered after the adoption were not their responsibility & we could not sue over it. At the time we signed the release happily because we thought we were dealing with an honest, reputable adoption agency who would help us in reaching our goal of getting a healthy baby. I know there are people who want to adopt special needs kids, maybe some of you who have could tell me why & whether there are any rewards? Also, I'd love to hear from anyone who has had an experience like this & how they dealt with it. I also would like to adopt again because I want another child & also because I'd like to experience raising a typically developing child, but I dont know how fair it would be adding another child to a family that had a child with special needs (would the other child resent her?) & also that the social worker might think we were trying to replace her with a different child or that we'd love the "normal" child more. Also how to go about finding a more reputable agency so we wouldnt end up making the same mistake. I feel so alone in this. Even my husband doesnt want to listen to my fears because he still thinks she'll catch up & I shouldnt dwell on the unknown that might not even happen, but I cant help worrying about it. I'd love to hear from someone who's had an experience like this, especially someone whose child eventually caught up.

[momraine]

I don't really have any answers for you, other than to tell you I am here if you want to talk. It is possible that the adoption agency really did not know that the child would have problems later, it's hard to know early some of the problems, sometimes you just don't know till later. My son was not diagnosed with Aspergers till second grade. We had no real clues before that there was something wrong, only small signs that we only recognize in hindsight. You do need to greive the child you thought you were getting so you can accept the one you have. As for other children, I have four and three have some sort of special needs, they don't resent the others, but they have learned compassion. Now, I do have to make a special effort to be sure each child gets individual attention, but it's not that hard. You might want to look into counseling for yourself to help you deal with the stress and grief. (it's almost like loosing a child, because you did loose the child you dreamed of).
If in the end you decide you can't handle this child, then there are organizations that could help you find either help or another adoptive family. (Chask is one that you might look at)
Anyway, i am here if you just want to vent or talk or whatever.

[Abdulina]

I'm so sorry for what you are going through. Give it time. I know that sounds cliche but trust me on this. I have 7 special needs children, all adopted internationally. And no, we did not know most of them would be the special needs that they are. We arrived home 3 months ago from Russia w/ two children. Nik is 4yo and we were told was mute due to trauma. No trauma. There was no way teh orphanage could have known he had Ushers Syndrome. He is deaf and will eventually go blind. We cried the whole way home from the hospital after finding out. It was a tough blow. Had someone ever asked me before, do you want to adopt a deaf/ blind child, I would have honestly answered not on your life!!! Now that he is in our lives, I can't imagine not adopting a deaf/ blind child. He has taught us so much in this short time. NOt to take stuff for granted, to stop and actually feel the wind or water on your face. The little things. The same will come to you in time. Like Lorraine said, you need time to grieve. We have grieved the loss of our son's future sight and hearing. We are implementing things to put in place for him. Moving to a one story house. Finding a deaf school and such. The main thing though is having someone to talk to. It is hard not knowing. OUr other daughter that came home along w/ our son also has severe issues and docs can't figure out what's wrong w/ her either. In time. For now, we are enjoying each child for who they are. Though I must admit, some days it is hard. We do have some that are mentally retarded. I will be honest with you, it is not easy. But I can honestly say it is very rewarding to see them accomplish something you tought was impossible. My 14yo, who is retarded(MMR), came to us w/ definitions and asked us to quiz her. With her FAS as well, memory is greatly affected and she gets fustrated. We thought great, again, we'll test her, she won't know it and get mad. However, last night, she shocked us both by knowing almost all the math definitions. -- these are ones I had forgotten in my old age--LOL. There is hope and don't ever fortget that. She came into your life for a reason. You just don't know what it is yet. I wish you all the best.

Take care,

[SuzBerg]

I am so sorry for what you are going through. I think the hardest part is the "unknown". For me I would rather have a diagnosis and know what I was dealing with then just know that something is "wrong" but not know what it is.

We knew our daughter had special needs when we adopted her. So we were at least somewhat prepared. We knew she had a very very complex congenital heart defect. But she also had development delays that we really weren't aware of when we were matched. She was 2 1/2 years old and had just started walking without a walker 2 months before she came to us. She really didn't talk. And several other delays.

We met with her genetecist who said they didn't know if she would catch up and we should prepare for her to always be delayed. She is 5 now and has caught up in ways no one thought she would come as far as she has. She is much smaller than most 5 year olds, walks much slower and still doesn't talk as much. But she has really suprised us. Her speech teacher thinks she will be dismissed from speech services for next year and her Pre-School teacher thinks the only reason she will still qualify for Special Ed in kindergarten is because of her heart defect.

It is not easy, but I just wanted to offer you some hope. Best Wishes - Suz

[lulubell]

We have 2 bio children and 2 adopted children. Our bio son is 5 and at the age of 16 mo. he was diagnosed "legally blind" and has wore very thick glasses ever since. We were devestated because both sides of our family has vision problems and eventual blindness. So we know at some time that he may go completely blind. He was also very delayed and receives Speech, OT, Occupational, and Vision therapy weekly at his preschool.He has been attending this school since he was 2 and this is his last year before kindergarten. All I can tell you is that he has grown and has caught up so much in these few years and I just know that his school was our blessing! His school is for the handicapped and there are many different children with such different level of needs. But when I see these children that could not walk , just come strolling down the hall walking with a walker, I start to cry. Or the children that never spoke just come up to me and chatter away, OH MY GOD! It just melts your heart. Every year at my sons Christmas Program I just sit there and ball my eyes out because all of these special kids just up on that stage singing songs and dancing away. Alot of these children will never be "normal" or live a "normal" life but you know that they are here for a reason, to learn, and accept people of differences. We also adopted our daughter, she is from Liberia, Africa. She was 5 at the time and she was delayed in maturity and emotionally. Having said that, she came with alot of emotional issues and I thought that I was prepared but found out real quick that I was not! I did resent our choice of adopting her for awhile because I grieved the child that I thought that she would be. I now understand why she came into our lives and even when I think that I am not doing enough as a mother to her, her teachers tell me how amazed they are with how she is blossloming. They also praise my husband and I for our diligence in providing emotional support for her. She was a disrupted placement, so we did not directly deal with all of the international referral and paperwork but we did however deal with the placing agency. They shared all of the information that they had but it was not much. So we went into this very blind. We are currently pursuing another special needs adoption but I understand that this being your first child and what you thought was a healthy child how you must feel. It is not an easy task, raising special needs children but just the smallest feats of accomplishment turn into the biggest rewards and that's what makes it worth it! There is an adoption agency that helps with disruptive placements , Pm me for the name. If you need any more info or just to talk please pm me.
Take Care,
LeeAnn

[mommytoEli]

ok..some comments for you....

I did not want a special needs child & I'm angry & resentful, & I regret adopting her. I feel like a failure as a parent. this is a very honest statement....and i totally understand it. i can not tell you how many nights i have cried in my dh's arms and said almost these very words about our dd. i continue to say she has changed the very core of who i am...and i no longer like myself b/c of it. i am angry at what she has done to me and my family. and although a rationale person could say it is not the child's fault...it doesn't make the thoughts go away. the only thing i can say to you is that i applaud you for being honest with yourself for how you are feeling. i think that is the first step. you have every right to feel this way. now.....what are you going to do about it? you are right, this is your child. you need to help her. and the first way you are going to do that is by helping yourself. please do me a favor and go away for a whole day...maybe even 2. get a pedicure and a massage. and calm down. then you need a plan. have you called your school district and asked what kinds of services are available to you. many districts have programs for children like yours that would allow her to go to school during the day for treatment and learning...which would give you a break...which makes you more refreshed for dealing with the problems when she gets home.

maybe some of you who have could tell me why & whether there are any rewards?
ok. i did NOT choose to parent special needs children...and yet i ended up with 2 our of 4. after watching my ds grow and change hte last 3.5 years, it is extrmely rewarding to watch the progress he has made. at 3 months old, they told us he would probably die, as his birth sibling before him did. then we were told he would probably be deaf, blind, and then mentally impaired. well, now all i have is a way healthy son....who might have some attention problems but i'll take it. he is the light of my life, and i am soooo glad i was soo naive when i accepted him as a placement. watching him has given me the courage to parent a special needs child again. i want one. i want to be the strong parent, i want to do the billion appointments again. i want to work with them and find the resources to help them. i can't tell you WHY i changed the way i thought...except maybe to say that i learned so many lessons in parenting ds, that i don't want to waste all that i have learned. and that i have found within me a compassion for these children that i just didn't have before. i want to help and love children that might not otherwise have a home. it is rewarding to me. everyday that ethan wakes up, i thank God that he gave me ethan. i can not imagine my life without that kid. he changed my life....in a good way.

I want another child & also because I'd like to experience raising a typically developing child, but I dont know how fair it would be adding another child to a family that had a child with special needs (would the other child resent her?) & also that the social worker might think we were trying to replace her with a different child or that we'd love the "normal" child more

ok..so i told you about my 2 sn'ers.....i love them. And ds needed a brother (everyone needs a partner in crime and I wanted another baby. B-U-T dd, well, maybe not the wisest choice i could make for her. but i decided that whatever decision i made, she'd still be the same person. she wasn't going to be any better if i decided NOT to parent another child in addition to the ones i had. i was worried about the homestudy, b/c she is special....but we were very honest with our worker. we told her dd's problems and how we dealt with them...and even in the post-placement talked about how dd and baby didn't really interact...and that was best...and she said she was really just wanting us to have a plan on how we could continue to parent dd the best we could, all the others, AND a new baby. and we did...so think about that. think about what you would say. i don't think just b/c you have a child with high needs means that you can not also parent another. it might even be good for your dd to received extra stimulation and experiences through interactions with siblings. my 3 1/2 year old and 13 year old DO resent their sister and her problems. but i also think it makes them better people for having learned to deal with how she impacts the family. i don't think that wanting to parent a "normal" child in anyway means you are replacing a high needs child. i laugh all the time that my newest, eli, is so healthy i don't know what to do with all my time. i love my normal and not so normal children the same....i've just learned that they require different things from me.....but i think that is what it means to be a good parent....knowing that each child is different, and each child needs different things, and meeting them there so that they will be successful.

i'm not done with my family. i only have 4 i really really want at least one more baby....maybe 2, and i really really want to parent a baby that needs a little more than others but that is just me...and it is not for everyone

[Just_Add_Water]

My heart goes out to you... I have years of experience working with parents in the first stages of discovering/accepting their child is differently-abled.

Some quick comments:

Hindsight is 20/20... the sooner you can process and let go of your tension/anger over being deceived the better. Life is a series of learning experiences... turns out you got alot of learning all in one heap!

Couples counseling! The divorce rate of couples with a special needs child is incredibly high (75-85%). An investment in the parents IS an investment in the child.

Efficiency in your resources! Local parent support groups are a swarm of information. Especially ways to utilize your state, local and school districts resources to your advantage.

Respite - you need it more than your guilt will allow. I would always advise parents: Give respite time as a gift to your child.

More kids - Of the typical developing siblings that I've known (give or take 100-150), a majority of them are very well adjusted sensitive individuals. Most of those are in homes that utilize respite services and participate in counseling. They also make time/effort to allow the typical developing child to participate in various activities with children outside the home. The typical siblings who are not well adjusted (attention issues, jealousy, anger, resentment, loneliness, anxiety, depressed...) are in families where the parents do not take time to take care of themselves. The parents are overwhelmed with guilt, anger, resentment, and regret (though, they don't realize it until years later... when they finally get into therapy). Many of the typically developing kids also have access to support groups for other similar siblings and are able to get their feelings heard.

Okay... so I lied about keeping this short. Good luck! I hope you achieve peace within yourself.

[MB80sgirl]

Thank you for all the advice, it's nice to know I'm not completely alone. I feel like no one really understands how I feel. I've started going to counseling, I dont know if it'll help or not. They keep saying none of this is my fault, but I still feel like it is. There were several times during the process when I saw the pictures they sent me & thought "something is not right with this child." But I didnt say anything because I thought they'd think I was nuts & that if something really was wrong they'd tell me. In one of the pictures it's obvious her posture just isnt right. I guess I wanted a child so bad that I was willing to ignore all the signs this wasnt the right one for us. When she came home I thought she'd get better. I never heard of a child not walking at 27 months, not to mention not even crawling or really sitting. I thoiught with retardation it was obvious from birth, but i guess not. The counselors cant answer my questions, like will she ever catch up, why did we go through all this to end up with a child with problems, why would God let this happen to an innocent child who did nothing wrong? If I wanted a child like this I could have gotten one from the county for almost free instead of going through all this heartache of a 14 month wait thinking there'd be a healthy baby at the end. I feel like I'll never be allowed to adopt again because of this & how I'm handling it, so I was doubly cheated. I really hope I can get to the point of acceptance & adopt again & love both children equally. I feel like my family is not complete. To be really honest I wish I could just trade her in & start over, or go back in time & change my miond about adopting her before it was too late. In my mind I wish I could give her back, but in my heart I know I cant. This is my child, just like she would have been if I gave birth to her, & she needs me to take her to all her therapies. I also wish I had a friend to talk to who understood. Everyone says, "this is the child God wanted for you" or "You need to deal with this." I know I do, but it's so hard. I feel like my dreams have been shattered & there's nothing I can do about it. I see other people's normal kids & get so jealous & resentful, it's not fair. Lots of my friends didnt even want children but ended up getting pregnant anyway & being blessed with healthy babies, while I wanted a child more than anything & went through so much to get her & then ended up with a defective one. All the therapists & doctors I've talked to agree the agency knew & chose not to tell us. This little girl needs love & acceptance, she didnt ask to be born so early & have so many problems. When you look at her she looks so normal, especially when she's sleeping. She's beautiful & sweet but all I see when I look at her is that she's different & it makes me so sad. How can I learn to love & accept her even if she doesnt get better? Thank you for letting me vent.

[crick]

Everyone's had good comments so just a few to add...

Anytime we go through a cycle of grief, there are things we need to work out. Yes, you will grieve over what could have and maybe should have been. Along with that grief comes resentment, anger and whatever else you are feeling. It may be that right now in your emotional cycle, you can't see the beginning of acceptance but getting help to deal with these feelings is the right step forward. Keep up with the counselor and also discuss possible anti depressant medications. I'm not a doctor etc., just saying that sometimes when depressed, it can help.

Another thing to add is you really have 2 separate things going on, even if they do relate.

1. your feelings/grief and loss
2. the needs and acceptance of your daughter.

To help with #2, you might need to change how you look at her completely. Instead of measuring her by other children, consider her accomplishments, traits, etc. on her own. She'll never be that other child, but she most definitely will be herself and she should be celebrated. She'll have a great smile or laugh, maybe she grips your hand so tight or snuggles in a way that gets to you. When she learns to walk or do a new task, no matter how small we think it is for "normal" kids...it'll be a huge milestone for her. Try to focus on HER normal, if that makes sense? Because that will help you feel good about all the things she does and is...because it's her and you helped her get there.

And yes, I do believe getting to these points takes time. I also believe that while your grief is important to work through and that too takes time, you can help by looking at her for who she is and not what she is supposed to be. Try seeing her imperfections as a part of her, but not as defining her. She's not a defect or a defective child even, because when put that way, it simply defines her as such. So that's what I mean by try to look at her and feel for her as herself, her whole being and all she has to offer. Even if it's just a smile she can give you...

[DCMomLady]

Please search out an essay called "Welcome to Holland" by Emily Pearl Kingsley. This is one of the finest explanations of life with a special needs child that I have ever read. I hope it gives you the same courage and inspiration that so many others have found in her words.

DeeCee

[SuzBerg]

Here's the article DCMOM suggested. I love this article, I think it could give you some perspective or peace hopefully. Thanks for suggesting it DCMOM!

WELCOME TO HOLLAND
From: Emily Pearl Kingsley's letter in "Dear Abby", 10/29/88
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 guidebooks and make 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 awhile and your catch your breath, you look around and begin to notice that Holland has windmills, Holland has tulips, Holland even has Rembrandts."

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

"The pain of that will never, ever, go away, because the loss of that dream is a very significant loss."

"But if you spend the rest of your life mourning over the fact that you didn't get to go to Italy, you may never be free to enjoy the very special, very lovely things about Holland."

[SingleMama2B]

Hi "MB80sGirl".... I know that it is hard, and truthfully, you do need to greive what you thought, and come to the acceptance on how special your daughter really is. My DD came home from Russia at the age of 8 years +. I was told that she was a preemie, was neglected, malnourished, etc., and with love, nourishment, etc. she would catch up. Well, I started noticing things, and 11 months home, I started researching, consulting with her peditrician, and after several specialists find ou that she has FAS/E, Microcephaly, and mild ADHD. She has gone through more tests (similar to your DS), and I was davastated for her, and scared for me. I adopted as a single parent, and I was wondering if I could do this, do the right things for her, will she have a good future, independence, etc. I took me a good month or so to go through the entire process of grieving, etc. Now she is home alittle over 2 years, and she has exceeded what the specialists have already said. She goes weekly for Neuro OT (to learn her stratagies, and litteraly to reconnect some of misfiring neurons, etc.), and had 3 A's and 1 B on her 3rd grade report card.

I too thought that 'everyone' lied to me about her, etc. I finally had to realize that being a 3rd world country (she was from a very small village which was poorer then poor in Russia), that they did not have the resources nor the knowledge. NOW, I am sooooo happy to have her in my heart and life. I can no longer remember my life before she came home! She is my SunShine.

I do NOT dwell on what she still cannot do or doesn't do as well as her cousins, etc., BUT what she has learned since she is home. I think about the life she would have continued to have if I hadn't adopted her, and my eyes well up. The statistics for older childern in Russia finding loving forever homes is extremely low!

We approach every day as a bright happy adventure. I hope that you can find Peace and the Special Light that your DD does bring into your home and hearts!

Blessings................