Special Needs Discussion – Developmental delays
Today we are opening the comments up for those families who have adopted a child with developmental delays.
Once again, I encourage you to share whatever you feel someone considering a child with this issue should be aware of. Please be specific as to what issue(s) your child has, how old they were at adoption, and how long they’ve been home.
In the case of multiple special needs, I encourage you to write about everything in one post and then copy and paste it into the relevant days. If you post two different comments in two different days then I would encourage you to link to your other comment (right click on the time of your other comment and click “copy link address”, then paste it into your new comment) so families can put both together in their head.
Feel free to share the tough stuff as well as the good stuff. And if the emotional/attachment/sensory issues have been harder to handle than the child’s medical special need then feel free to talk about that as well. It’s not going to be seen as complaining, it’s going to be seen as telling it like it is.
I will again encourage those who are open to it to share your forum name, in case someone wants to PM you with specific questions. Or if you aren’t on the forum and would like to leave another way for people to contact you then feel free to do that as well. If you aren’t comfortable doing that then no problem – we’re happy you shared and you aren’t obligated to answer questions. But if you are open to it then I’m sure there are some who will appreciate it.
Everyone please remember the Be Nice rule. Comment on your own situation without commenting on those who have commented before you.
The other posts in this series (so far) are:
- Cleft Issues
- Circulatory and pulmonary issues (including heart and blood conditions)
- Bone, muscle, and joint conditions (including missing limbs)
- Craniofacial (other than cleft), to include issues with hearing and eyesight
- Neurological issues and Brain Trauma issues
- Urogenital and Gender issues
- Issues having to do with the digestive system
- Infectious diseases
March 22nd, 2011 at 8:33 am
My first daughter was adopted from Gejiu in 1996, as an NSN infant. I remember the moment she was placed in my arms as though it were yesterday…the nanny handed me this 11 pound, eight-month-old baby with a huge, bald head and legs like knitting needles. She beamed a big, huge, toothless smile and snuggled her head down on my shoulder. It was magic!
She was very developmentally delayed. At eight months of age she could not roll over, sit up, grasp an object in her hand, or babble. She was like a baby of two or three months of age at most. When I brought her home and she was greeted by my extended family, it was painful to see the comparison between my daughter and her cousin, who was four months younger but miles ahead of my baby in development.
The pediatrician felt that part of the delay was nutritional (she had been given formula twice a day in the orphanage, and nothing else). It did appear that she had been held and cuddled, because she was very snuggly and responsive. I think I would have been more worried if she had also been emotionally delayed. Somehow, I was pretty sure that she would catch up.
She did, but it took a long time. At nine months, she could finally roll over. At thirteen months she crawled for the first time. She was almost seventeen months before she was able to pull up and walk on her own.
At two years three months old, she was still not talking, which scared me more than all the physical delays. It was obvious that she understood everything I said, since she could follow two and three step commands. But she only had three or four spoken words, including Mommy and “tatoo” (thank you).
At two and a half, she suddenly EXPLODED with language….one of those stories you hear about where a previously silent toddler starts gabbing in five and six word sentences. She could identify nine colors, and by age three could spell her first name and recite the complete alphabet.
The tiny, bald baby with the huge head is now a fifteen year old honor student who runs track, plays the flute and taught herself the oboe. She is an amazing young lady, and one would never know that she had begun her life as an underweight, delayed infant.
March 22nd, 2011 at 9:04 am
My experience is very much like yours, mallmarie, I was handed a baby of 11 months that could not hold her head up, that could not fixate her eyes and look at things, she could not hold on to things, she could not grasp. She only took formula. She was very much delayed in all areas. She learned to walk when she was 22 months old, she was delayed in all areas, it was as if the time in China did not count. As if she was a newborn when I received her.
To other people including medical personnel she looked as if she had severe brain damage. Upon return to our home she received lots of medical attention but there was nothing wrong with her except for being delayed in all areas. She is a very normal, happy person, has easy to learn and interacts well with other persons. She has been a very easy child to parent and is now in her teens.
I am so happy!
March 22nd, 2011 at 9:52 am
my daughter was an sn adoption (cl/p). she was adopted at 15 months old. she couldn’t sit herself up but could stay sitting up on her own. she could hold her head up.
she was 13 pounds. she has gained a pound a month for the past 10 months and is now 23 pounds!
she had never used her hands before. her thumbs were tucked in and she would try to grab things like a claw. we were worried in china that she might have neurological issues.
within a month she was scooting and doing the military crawl. she crawled 2.5 months later. she was walking at 19 months. she was assessed to be at the 6-12 month level by both EI and the IA clinic we go to on coming home in all areas and she was caught up in everything except language within 3.5 months. (language is due to her SN – not any delays). it was AMAZING to witness.
it turned out the information we received was wrong and my daughter was actually in foster care her entire time in china. she was in a home with three adults and one other child. the reason for her delays is that she was carried 24/7 and treated like an infant. when i had someone find and contact her foster mother and was told this i communicated to her, thank you, thank you, thank you, thank you. they loved my daughter very much and ask for pictures and updates and want us to visit some day.
because she was held so much my daughter is loving, makes eye contact, and is adjusting beautifully. we are coming up on our one year home.
the foster mother told us that they all tried to feed my daughter all the time. it was hard with her cleft and most of her weight gain came after her palate surgery.
we would have been so much more worried if she had had attachment issues or showed rage or any of the other emotional issues that can crop up. we waited for four years in the NSN line before received our SN referral and one thing i can say about the wait is that it gives you time to REALLY be prepared. so we were/are very aware of how lucky we were/are on this front.
she is a happy, happy, happy girl. and she thinks everything she does is great – her self-esteem right now is sky high. the amount of joy that she brings to so many lives is immeasurable ;-)
the foster mother told my contact that she had fostered three dozen children over the past 12 years and my daughter was the smallest and the weakest.
i can not in a million years ever fathom how lucky we are. my daughter is not the daughter of my dreams…she blows my dream daughter out of the water.
can you tell we’re proud of her?!!!
March 22nd, 2011 at 11:17 am
I want to put this out here as a cautionary tale that developmental issues may have more behind them than nutrition, exposure to stimulation, and institutional living. I also responded in the Craniofacial blog entry.
Our “NSN” daughter was adopted in 2008 at 10 months. When we met her, A. was floppy, not sitting up, not rolling over, had a very flat head, had no core strength, and was disconnected (although happy) with the world around her.
We knew from the beginning that something was up, but had to wait until we got home to figure out what. Within a month of coming home, we started physical therapy (for core strength, walking) and started to do testing, in the direction of hydrocephalus and Dandy-Walker Syndrome, . We ended up several months later with a diagnosis of bilateral congenital hearing loss and balance issues due to a missing vestibular system on one side.
A. took her first steps at 20 months, and her brain has mostly compensated for her balance issues, although she needs to slow down and to be more careful in new environments. The hearing issues are being addressed with technology and oral/verbal therapy. To cover the possibility of a related syndrome, we chose the organ function/scan route, rather than the genetic route, because the geneticist did not know what to test for. Since then, we have identified several genetic tests that could have been done but have chosen not to do them. So far we have dodged the syndrome bullet.
A. is growing up to be the amazing, opinionated, stubborn love of my life (well, one of 3.) It’s amazing to compare those first pictures with who she is today, a totally different child.
We all have to be ready to handle the known and unknown situations that our children present to us.
K.
March 22nd, 2011 at 12:09 pm
Our 2nd daughter was adopted NSN at 18mo. in 2004. When we met it was clear that her file had been massively overstated as to her development. She presented as a 6mo. old maybe. She had a lead count of 30!! She didn’t walk until 2, she didn’t talk at all until 2 1/2 (not even babble). She screamed the first year we had her. Her vestibular is out and she falls off of things, falls over, trips and has a hard time with stairs. She just learned to ride a bike at 8. We did years of OT and speech. At 3 it was common to go through at least 20 tantrums (total meltdowns) a day. We were told at 3 that she was autistic but worked with sensory integration until she was 6 and were finally able to get her a proper assessment. She is classic autism. Some splinter skills that are high, memory, math, fine motor. Some areas where they’ve labeled her mentally retarded, sequencing, common logic. With the highs and lows she presents as normal intelligence. She now has a behaviour consultant and a interventionist working with her. I’m not sure it’s helping, they work with her on perception and learning to use her words to get her needs met. She won’t/doesn’t ask for food or the bathroom. Doesn’t report when she is hurt. She doesn’t recognize danger. As long as she doesn’t use words to get her needs met she is essentially non-verbal.
She is still wet at night and her pediatrician has let us know that won’t correct. As sad as it is, that was my most crushing moment for her. I bawled when we heard that.
My gut tells me that the lead that caused damage in her brain is the cause. The autism specialists agree that there is enough quirkiness to her that they could have labeled her with a medical need but were quick to let us know that schools wouldn’t know how to meet her needs and would likely stop her from doing things with a medical label. Plus the services she needs are all available through the autism label that she qualified for. We persoanally didn’t care what the label was, we just want her to stay safe and continue to learn.
She continues to learn. She is doing great in school. We’re so proud of her progress. She works harder than anyone I know just to get through each day. We absolutly adore her. She is happy, funny and quirky. The professionals talk about life skills with us but we feel she’ll continue to work at her issues and who knows what she can accomplish. She still falls out of bed :) but she wants to be an animal trainer and run a big animal rescue center. We’re starting her out slowly, she has lots of pets and she now baby sits family and friends pets when they go away.
Starting out I would have said NO WAY to an autistic child. I’d consider doing it again by choice. Our girl is amazing. My name in the forum is ershelnel
March 22nd, 2011 at 12:28 pm
We have adopted two SN daughters.
DD#1′s (6 1/2 years old) listed special needs were strabismus and a mental developmental delay. No additional information regarding her delay was provided. When we requested an update because her file 1 1/2 years old, it only stated that she was now doing well in school.
After meeting our daughter, we quickly forgot about any developmental delay! She is stubborn, strong-willed, smart, a master con artist, incredibly manipulative, and a survivor but NOT delayed. Even our Chinese guides were shocked that that label could eve have been placed on her.
Upon arriving home, I contacted the local school district and eventually convinced them to evaluate her as if she was an incoming kindergartner (we had chosen to hold her back one grade and not start school after immediately coming home). For the testing, we had a translator present. My DD#1 went non-verbal for the first half hour. Then she would only answer questions if a rubber duckie answered for her. She stopped in the middle of the test and sang “Twinkle Twinkle Little Star” in Chinese to the oos and ahs of all the adults present. She walked out of the test with one hand full of candy and five rubber duckie toys in the other hand from all the bribes to get her to actually do the tests. When we met again to review the results, they were horrible! However, everyone agreed that the test results did NOT represent the master manipulator they watched in action and threw out the results as totally inaccurate.
She did summer school with ELL as a pre-kindergartener and then entered kindergarten in the fall. She did very well with her teachers and made great progress. This school year she entered 1st grade and was still in the half day ELL program. Due to lots of factors, we chose to pull her out of the public school and transfer her to the private school our DS attended. Still went to the parent-teacher conference to review her progress. I was almost in tears when her teacher informed us that she was only reading on a beginning kindergarten level after she had done so well the previous year. When I reported the information to her new teacher, she pulled out the same reading system and showed me that she was reading ON GRADE LEVEL. That little stinker had conned her public school teacher into thinking she couldn’t read!
Love her dearly! But she will find out what is the least you expect of her and perform at the lowest level possible. Thankfully, she has parents and teachers now who know just how bright she is and set high expectations for her.
DD#2 just came home in January. She is 7 years old. Her listed special needs were a mental developmental delay and small stature. Her referral file contained results of a CT scan that were normal and an IQ test from when she was 4 1/2 years old that had an overall score of 58.
Just the mama’s gut reaction…every picture we ever received of her never looked to me like a child with a 58 IQ. We prepared ourselves and our other children for the reality that she might possibly require care for her entire life. However, we still hoped for the best.
In an update we received from the orphanage, again because her file was so old, they did mention that she could not be potty-trained for her bowel movements. The reason they gave was that it was due to her delay.
Again as soon as we met our daughter, we knew that this is not a child with a 58 IQ. She physically looks like a four or five years old child and is institutionally delayed so she acts more like a four or five year old.
There are areas where she is delayed. She appears to have never used scissors and doesn’t know how to hold them. She doesn’t color inside the lines but just scribbles. She uses both right and left hands to write and eat. We are trying to determine if she is a lefty who was punished to use her right or is truly ambidextorious. She never went to any schooling so she doesn’t have the hand writing or exposure to pinyin alphabet that DD#1 had.
She is bright and has a great sense of humor. She loves music! Sings lots of songs, loves her CD player and Chinese CDs, and already begs to take piano lessons. She is a language sponge right now and is amazing us with how fast she is learning English. She wants to know what everything is and is already putting together her own sentences upto six words.
I fought the school district for six weeks until they finally agreed to evaluate her with a translator. However, in many ways they waited too long. The testing environment was a nightmare! They walked her into a room filled with toys and then told her she could not touch any of them but had to sit down with strangers. They immediately started the test without introducing the translator or establishing the translating relationship. DD#2 was so scared that she started to suck her thumb and rock side-to-side to self-soothe.
Even in this terrible situation and even though she did not perform to her potential, her IQ score from this test was 69. I see this as very hopeful, even though not accurate. To me it confirms that she has far greater potential to learn than either test has confirmed.
On the potty issue, we’ve learned a lot since she has come home, but we are still struggling. In China, the orphange staff said that this was never a problem for her and was confused that we received that report. Uhm…there are a pair of panties that stayed in China, and we were very glad we brought Pull-Ups.
She would pee and asked to use the bathroom everywhere we went. But she would not poop. She almost seemed to pass gas and then have a schmear in her pants, but never pooped. We started bribing her with Skittles. One candy for every poop in the potty!
When we got home, her doctors discovered two issues. First of all, she had been chronically constipated. Possible causes were her diet or a reaction to a negative or painful experience that caused her to begin to hold it until she was so impacted that she couldn’t go anymore. Her tummy was bloated and painful. Then they also discovered that she had Giardia, an intestival parasite that can cause bloating, cramps, and runny stools. My poor baby girl probably hasn’t experience the normal sensations to poop for years!
After coming home, though, she has stopped telling us that she needs to go potty – peeing or pooping. Loves these American disposable pants and diapers that hold so much that she never has to stop playing! It is frustrating right now to be attempting to potty train a seven year old with a language barrier! But we do not believe this has anything to do with her intelligence.
She has only been home two months. We are still unraveling this mysterious child so I can’t write the end of the story. Currently we are choosing to homeschool her because we don’t feel that the private or public school setting would be best for her right now. However, I am going very slowly and focusing more on language and basic readiness skills for now. Reading writing and arithmetic can wait a bit as home, family, adjustment, and bonding are more important.
Laranou
March 22nd, 2011 at 12:34 pm
I hope some parents post on their experience with children identified with delays by China. I’m going to post my sister’s experience with her ds, since she is not a member here. His SN was hypospadias. He was listed as developmentally on target by his paperwork. He was 2 1/2 when he came home to them, from a well thought of SWI that is known to have much resources, etc. They’ve been home 2 years.
He was severely delayed. He could barely walk, and still has issues with balance. He could not speak. He had 2 syllables he repeated over and over. He has been in speech therapy since the beginning, with minimal improvement. His receptive language was very spotty also. Sometimes he could follow simple commands, other times could not.
At a year home, he was evaluated for global developmental levels, after the initial peds recommendation of “just feed and love him” didn’t seem to be getting them very far. He was found to be severely behind in all aspects of languange – expressive speech, processing language, etc. He is still delayed physically, both in gross and fine motor skills, though he’s not as behind there as in language. And he has some overall delays in cognition (sorry, I’m blanking on the correct terms).
The doctors felt he was simply neglected at an important time in his brain development combined with perhaps he was more sensitive to lack of stimulation than some other children. For sure he was probably never spoken/intereacted with directly for very long, and instead was in a room of babbling toddlers. They cannot begin to predict how much he’ll improve and what long term issues he will have.
For my sister, these issues have been much, much larger than his stated SN, which was corrected with a two stage surgery and is no longer a problem. They have good access to care for him, but her dh is military and they move every 1-2 years. He also deploys frequently and is left alone alot. She’s strong, and can do it, but it takes a toll on her. She is constantly having to find him new doctors, new therapists, etc. Her homeschooling her dd has been impacted by the many visits to therapists her ds makes.
She loves her ds, and obviously wouldn’t trade him for anything. But she would not have sought out a child with delays.
March 22nd, 2011 at 12:57 pm
Our son was adopted at 2.5 and his SN was listed as “developmental delay” We had been waiting to be matched with our agency for a few months, but had been just browsing waiting children list and he was on RK newsletter in 02/09. We reviewed his file and didn’t find his delays to be much at all, however the first doctor that reviewed his file gave him a HORRIBLE evaluation and threw words at us like autism and retardation…we felt she was wrong and went on to have two other doctors review his file who gave much more realistic, yet cautiously optomistic outlook. On Gotcha day he seemed very on target and upon arriving home he actually tested with no delays at all by First Steps with is an early out reach program for Preschoolsers, not even orphanage effect. We talked to our guide and even questioned the director about it, who both admitted to using the diagnosis to get mostly healthy older boys who weren’t paper work ready as infants adopted. I’m not trying to encourage everyone to go looking at all DD files with this slant, there is a HUGE spectrum of outcomes and possibilities with this diagnosis. BUT I also DO NOT think it’s true that all children with this diagnosis are also worst case scenerio when it comes to delays like I hear mentioned and disucssed reguarlly. I think sometimes these children are overlooked looked over due to that old myth and both our guide and director admitted that just isn’t the case any more especially with boys. He’s four now..still not a delay to be seen. Not to say we haven’t had some orphange behaviors to deal with, and huge dental bills, but literally not any DD. He’s a wonderful funny sweet 4yo boy…and love him DEARLY!!! It still blows our mind he sat on the shared list for a year!
March 22nd, 2011 at 1:45 pm
We received referral information concerning our second daughter in September 2006. At that time, she was 8 months old and was born with a cleft lip. In the referral packet were several photos and I noticed throughout the months, she was wearing the same outfit. I realized that the babies are dressed in several layers, but something about this just “didn’t feel right”.
Fast forward to January 2007…. I received DD#2 into my arms and was shocked! DD#1 was adopted at 8 months old. At that time, DD#1 weighed 16 pounds and developmentally was on track. DD#2 was almost 13 months old the day I received her. We took her back to the hotel and placed her on the scales….she didn’t even weigh 12 pounds! She needed newborn diapers and 3 month sized clothing. Her tiny sized surprised the Chinese shopkeepers on the Island once we reached the White Swan. No one had clothing small enough for her.
I believe DD#2′s orphanage did everything they could to care for her. I don’t believe they knew what to do with a baby born with a cleft lip. I know this because of the wonderful things I have read from other parents whose children came from here. It’s in a very rural area and very poor.
DD#2 at 13 months had never stood on her legs. She did not know how to sit up or roll over. She had a hard time holding her bottle (she did not use a cleft bottle, but had figured out how to get formula out of a regular bottle by tapping the nipple with her gums), but could eat some solid foods. She came to me with a very bad diaper rash (sores, bloody) and was not pleased to be cleaned up.
This being said, there was a light in this baby girl’s eyes that was beautiful!! Everyone was drawn to her and commented how special her personality was. I laugh remembering the group from Spain who was adopting at the same time as I who would call out to my daughter when they saw us!! DD#2 laughed and clapped, she sang out and chatted with us all.
She was evaluated by my state’s EIP shorty after we returned home. DD#2 received PT and OT for 6 months. Our PT gave this feisty little girl permission to skip crawling because as she put it, “She’s over a year old. She wants nothing more than to get on her legs and chase her sister around!!!” She began walking around 16 months – a few days after her lip was repaired which caused a lot of angst for Mom & Dad.
Around 18 months we gave up the bottle for a sippy cup and she could feed herself as good as any 18 month old can. At 2 years old, she was running and hopping. We enrolled her into a gymnastics program which helped with balance issues. No one believed she had only been walking a few months at that time.
Today DD#2 is 5 years old. She’s still tiny weighing only 34 pounds and she’s still feisty!! She takes dance class and will perform in her first recital this spring (as a ladybug of all things). We’ve enrolled her into softball and she’ begin practices in a couple of weeks. She swings, crosses the monkey bars, rides the zip-line, rides her bike, skips, jumps, etc. etc. Anything and everything a child her age typically performs.
I am “catbert” on the forum…..
March 22nd, 2011 at 1:49 pm
Our LID was Dec of 06, but we were always open to special needs and went into China adoption hoping to adopt a waiting child before it was the common thing to do. We were open to a variety of special needs from mild to moderate. Our agency gave us a referral of a baby classified as developmental delay due to prematurity. She was 3 lbs. when found the day of her birth (due to umblilical cord). We adopted her at 15 mos. of age. She was not walking, barely playing with toys, had never eaten food, but within a few months of being home, she caught up, and was typically developing for her age. She has been home for over 3 years now! She is doing wonderful, and we are so blessed. The amazing thing to me is that in waiting in the traditional line, you may end up with a child with even more developmental delays than the special needs program.
March 22nd, 2011 at 2:30 pm
Our daughter came to us in October 2002. She came through the NSN program but had extra digits on all 4 limbs…6 toes on each foot, 6 fingers on one hand and a skin tag on the other hand. We researched it before we left, but not too much. At that point, it wouldn’t have mattered if she had 2 heads. She was our daughter and we were totally, completely in love.
While we were in China we had suspicions that there was more to it than just cosmetic extra digits, but she was ours and there is no way in the world that we would have ever disrupted the adoption. She was distant, wouldn’t make eye contact, wouldn’t eat anything other than her bottle, didn’t smile much, couldn’t sit up or crawl at the age of 10 months and was just generally so much different than the other babies in our group. But we chalked it up to orphanage behaviors and were over the top excited to begin our new life together.
Once we got home, she came out of her shell somewhat, but over time we realized more and more how delayed she was and how different she was from other babies her age. She refused to put anything in her mouth except a bottle (not even fingers or a toy). It took her at least 6 months to learn to crawl and she didn’t walk until she was almost 2. She never babbled, and made very little noise otherwise. We had her evaluated by an early intervention team and began therapies as quickly as we could.
Her pediatrician also noticed that she had nystagmus (eye shaking) and sent us to a pediatric ophthalmologist. She felt it was something she would outgrow but sent us for specialized testing to rule out muscle issues and brain tumors.
By the time she was 2 1/2 we knew there was something more going on. After searching the internet and posting to a few groups of other adoptive parents, an online friend came across Bardet Biedl Syndrome. It described my sweet girl to a “t”. I made a frantic call to the pediatrician and the eye doctor and soon enough we had the piece of the puzzle that had been missing. She was a text book case of this rare syndrome. She will continue to have vision issues, with possible legal blindness in adulthood. She is very large (borderline obese) for her age, and there is really no cause or explanation for it other than the syndrome. She is still extremely developmentally delayed. She didn’t talk until she started 2nd grade, but she has more knowledge in that little head than she knows what to do with. She has a knack for letters and numbers and loves anything involving them. She is a loving, affectionate, happy 9 year old. Despite her significant delays, she listens well and follows directions most of the time. (But honestly what 9 year old doesn’t test the limits occasionally).
There are things I would love to change for her to make her life easier, but I wouldn’t change a thing about her personally. She is one of the most easy going, most happy-go-lucky kids I have ever been around. She makes everyone smile when she is around, and there is not a doubt in my mind that she was specifically chosen to be my daughter by a power much stronger than the Chinese government. I am lucky to be her Mama!
March 22nd, 2011 at 2:36 pm
We adopted a 6 1/2 year old 6 months ago that had this label. I am a special education teacher, so I knew upon seeing the diagnosis that it probably meant more than just institutional or nutritional delays. I figured that obviously something about her seemed more delayed than the other children in the SWI. Trying to figure out what areas she was delayed in were a little tricky.
In the US, the term developmental delay is given to children who have a 35% or greater delay in one of the 5 main developmental catagories, or a 25% delay in two or more. Through some research, I found that this was wasn’t always necessarily true for the special need diagnosis of “developmentally delayed.” The five main areas that you look at are cognitive, social, self-help/adaptive, motor (both gross and fine), and communication.
With our referral paperwork, I just had to take each of the areas and figure out by her descriptions if she sounded on target or not. I came up with the assumption that she was cognitively delayed. I sent the SWI some questions, and they confirmed for me that this was her major area of delay.
Now that we are home and I have had a ton of time to work with her, I think her developmental delay translates into Learning Disability. She just struggles with learning. It comes, but just at a slower rate. Her communication is amazing….she picked up complete English in three months. When you talk to her, she seems so bright.
Eventhough she is not autistic, I use applied behavior analysis techniques to teach her. It seems to work for her, so we just repeat the same task over and over until she has complete mastery.
We have had a wonderful experience adopting her. I would not hesitate adopting a child with this diagnosis again. I am also always willing to help potential families pick apart falls to help them come up with what areas specifically the delay seems to be in.
I am elemomma on the forum.
March 22nd, 2011 at 3:40 pm
Both our NSN daughters were developmentally delayed. Our 1st dd was 8 months when we received her. She could sit up about 30 seconds before she tumbled over. Could not crawl, walk, or even hold a cheerio in her hand.
Our 2nd dd was 11 months when we received her. She was worse off than our first dd. She could sit up for 10 seconds before toppling over. In her reports it stated that she was walking, and we even had a photo from the SWI of her standing. We were very confused until we looked at the photo closely and saw that the SWI had actually strapped her to the wall to make it appear she could walk! She also was only drinking TWO ounces of formula a DAY. She was so, so tiny and malnourished that the doctors in China thought she had cerebal palsy.
It sounds like a lot of the children from SWI are this way. My suggestion for parents-to-be is to make sure they get lots of “tummy time” at home. They are not used to being on their stomachs at the orphanages. We used to do 5 minutes a day, then 10, then 20. We placed blocks just out of their reach so they would have to crawl. We would help them by putting our hand behind one of their legs.
For dd2, we enrolled her in our county’s early intervention program. Once a week someone would come and have dd do floor exercises. She also gave us ideas on things we could do to help dd with her mental development.
DD1 started crawling 2 months after we came home, and started walking when she was 14 months old. DD2 never really did crawl, but she was walking at 16 months.
DD1 is now 7 and average-sized (on Asian charts). Doctor thinks she’ll be around 5’1 as an adult. DD2 will be 5 years old next month and she is teeny-tiny. She is 29 pounds, and a good 5 inches shorter than her classmates at preschool.
Mentally & intellectually– both girls are smart and outgoing. At age 5, dd2 is the smartest child in her class and can read.
March 22nd, 2011 at 5:41 pm
Our son whose special need was “slight developmental delay”and “brain dysplasia” (at 21 months) which no one new what that meant, was indeed delayed. At 21 months he could only walk while being held by both hands, only said Mama and Baba and Meow, but he was very alert, engaged in his surrounding and excited to try new things. Then six months of finding out about a series of other medical issues ensued, he had chronic lung infections, two bouts of seizures for which he is now on medication, a discovery of a submucous cleft palate that was repairde, and sleep apnea. After we attended a developmental assessment clinic, a geneticist suggested that he be tested for syndromes. We found out that he has a rare genetic syndrome called Smith-Magenis. We have been doing all we can do for him. He is still very much delayed in expressive language, although he has excellent receptive skills. He is learning his letters at age four, and is progessing all the time. He is a very happy, social little boy. We love him very very much.
So I don’t know what “advice” to give. As some people have said, “developmental delay” on the record can mean many different things. We took it at face value and didn’t think of any of the issues that we are now faced with, it came as a shock, but that is life. I am actually glad we didn’t know because back then we probably would have just passed on his file.
March 22nd, 2011 at 5:45 pm
I forgot to say in my previous post that he also had VSD as a listed special need, in addition to the slight developmental delay. It is hard to believe that I forgot that, but considering all the other issues he has had, that one has been the least problematic and I forget that he has that!
March 22nd, 2011 at 7:22 pm
We adopted our son in March 2009 at the age of 4.5 (although we are fairly certain that he was actually about 5.5). His listed SNs were developmental delay, cleft lip/palate, a missing foot, a deformed hand, Hep B and a deformed ear. When we met him we discovered that he also had heart defects (TAPVR, ASD), an inguinal hernia and moderate hearing loss in one ear. He had an unrepaired palate, was in heart failure and weighed 24lbs at either 4.5 or more likely 5.5 years old.
He was significantly delayed when we met him (seemed like a 1-2 year old) and we assumed it was due to his medical needs not being met. In part, that was true – once he had heart surgery, his palate was repaired, he started getting better nutrition and he got a prosthetic for his missing foot he started making HUGE gains. He has a residual speech delay due to having a very late palate repair but he should have normal or close to normal speech with time and therapy. He is more or less developmentally on track in all other areas.
Now that he is in kindergarten, however, we can see that he has some learning disabilities. He IS capable of learning and he is not cognitively impaired but he needs a lot of help with schoolwork. We are working with the school to teach him strategies to help him learn better. We fully expect that he will be able to compensate for his difficulties and finish his education at least through high school, but it is going to require a lot of hard work from him, the school and us as his parents.
To families considering a child with a listed SN of developmental delay: I would strongly encourage you not to assume that the diagnosis is incorrect, or exaggerated, or that the delay will be fully fixable or no worse than any typical SWI delay. Read the child’s information carefully, ask for an update if the file is old and try to ascertain the specifics of the delay. I don’t think you need to prepared for a worst-case scenario in every case of developmental delay (ie. a child with severe mental retardation who would need full time life long care) but I DO think you need to be prepared for a ‘worse-than-it-looked-on-paper’ scenario. The majority of kids are going to do MUCH better in a family situation than in a SWI situation but IMO you should not expect that all children listed with developmental delay are going to ‘catch up’ once they are in a family.
March 22nd, 2011 at 8:40 pm
We adopted our little girl at the age of thirteen months over a year ago. Our daughter was NSN. All our medical reports indicated that she was healthy and well developed, that she could sit up and stand on her own and that all of her vaccinations were up to date.
On meeting our daughter everything seemed to be normal but once we got back to the hotel we discovered that she could not sit up on her own let alone stand. She showed signs of severe developmental delays and couldn’t even suck on a bottle. She had major sensory issues with her hands. Rolling on to her side or stomach was very traumatic for her so we went back to basics and got her an activity mat for six month old babies. By 22 months she could walk unaided but still has problems with coordination and balance.
After a lot of blood works including genetic testing we discovered that she had no immunizations at all and that she also had three abnormalities that showed in her genetics. Unfortunately they could not be identified without either meeting with or testing the bio parents. Our geneticist says that her development could be due to this or we could see problems or a syndrome later on down the line when she gets older.
At the moment she is seeing a feeding specialist for low muscle tone in her face and for chewing and drinking. She is also seeing a speech therapist, a physio therapist, an occupational health therapist and a DSI once a week for an hour each. She underwent a CT scan this week to investigate her lower than average head size, Results are now pending.
When we adopted her she also had behavioral problems which are still an ongoing issue and which at times can be very testing. She can be destructive and aggressive and her attention span is very short.
On the positive side, she is a very happy little girl whom has no attachment issues with either her dad or me. We adore her and she adores both of us.
Sometimes life throws you a curve ball and it tests your strengths and weaknesses as parents but with one of her smiles she puts our hearts at ease. We know that we have it easy compared to a lot of other parents.
March 22nd, 2011 at 8:43 pm
Our daughter is now seven and in first grade; we adopted her just before her first birthday through the NSN program. She was in foster care, and the only child (that we know of) in the home.
At 13 months of age, she was formally assessed at about a five-month-old level for everything except communication, which appeared fairly on target given the language switch. With tons of therapy, both professional and play therapy at home, she learned to roll over at almost 13 months, self-feed at 14 months, crawl at 15 months, walk at almost 19 months, and on and on. She has sensory processing disorder, which is manageable now, but was quite difficult to deal with initially (and it runs in my family, so I was not unfamiliar with it). I was a teacher and planned to remain home the first 6 to 12 months after we adopted our daughter, then return to school. I never returned to work. It took years to fully catch up in regards to the sensory and attachment issues.
Most of her delays probably stem/ stemmed from her sensory challenges, as well as poor nutrition (she was less than 14 pounds at 12 months of age), and possibly premature birth (it’s a guess, but many doctors and specialists believe she was a preemie).
At seven, she is now all caught up except in her fine motor skills (and therefore some related self-care skills) and arguably gross motor skills as well (motor planning remains a challenge). She is an exceptionally articulate, bright child, but we are not without learning challenges. Although she is at or above grade level in all academic subjects, she continues to need assistance in some areas, most especially reading comprehension. The school works with her not because of where she’s at (she’s ahead), but because she fails to progress adequately without specialized help. At this point we aren’t sure if this stems from her sensory issues or a learning disability.
We feel incredibly blessed that the school is willing to work with her in this manner despite not having an IEP. The principal told me they’ve seen this happen before and they’d rather tackle it now than wait until third grade when – all of a “sudden” – she’s behind. She doesn’t receive the same level of services as children who qualify for an IEP, but the school does what it can. And I volunteer a ton at the school in order to pay the school back in the limited way I can.
March 22nd, 2011 at 9:00 pm
It seems as though many of the people posting here found developmental delays in their NSN children. Our DD (adopted in 09) was listed as SN with the only need being physical development delay. It reported that she had an insufficient chest circumference. We showed her paperwork to both our pediatrician and an IA doc. They both thought that she looked fine. When we came home we brought her to see Dr. Miller at Floating hospital. She said that the diagnosis of insufficient chest circumference was one that she used to see in the early stages of adoption from China. I guess it was considered a way to “fast track” kiddos into adoption. Both Dr. Miller and our pediatrician have found her to be perfectly healthy. After being home for 18 months we have seen some areas in which she is slightly delayed, but others in which she is ahead. Receptive language skills aren’t great, but it’s not enough to qualify her for any services.
I have to admit that it was a bit scary before the adoption and looking at the file of a developmentally delayed child. We feel so very lucky that our DD, even though referred through the SN program, is perfectly healthy. We were prepared for other outcomes, but so very happy that she is happy and healthy!
March 22nd, 2011 at 9:48 pm
My experience is similar to many of the stories posted here. My NSN daughter was nearly 15 months old on adoption day but could not sit up, roll over, or push up when on her tummy. Her muscle tone was generally poor. She was extremely tiny (16 pounds) and had a very flat head, indicating that she had spent a lot of time on her back. She would have easily been mistaken for a much younger child had it not been for a mouthful of teeth that gave an indication that her age was accurate. She was, however, very alert and aware of her surroundings. She was quite traumatized by the adoption process and cried almost non-stop for two days. I later learned that she was very attached to a nanny at the orphanage, whom I met a couple of days later. At 15 months, she seemed more aware of what was going on than some of the younger babies, but wasn’t old enough to really understand.
When I got her home, I had her evaluated at the International Adoption Clinic at Texas Children’s Hospital in Houston. I had a really positive experience with them and would highly recommend them to anyone in this region. They gave me referrals for assessments with several different types of therapists. The one that helped the most was the physical therapist. My daughter learned to roll over very quickly after we got home and I soon had her sitting up, albeit propped up with pillows. However, I could not get her to tolerate being on her tummy. Whenever I put her on her tummy, she seemed totally disoriented and confused. She would immediately flip back over onto her back. The other thing I soon discovered was that my daughter had relatively strong abdominal muscles but week muscle elsewhere. It appears that she attempted to raise herself to a sitting position while lying on her back using only the abdominal muscles. While she wasn’t successful at doing this on her own, I soon discovered that she loved making a game out of this by having me gently help her to a sitting position. She’s the only person I ever met who actually liked doing crunches!
The physical therapist noted that my daughter had what is referred to as “scattered development.” This means that the muscle groups/skills develop out of the usual order, with some developments that usually occur later (e.g. the strong abdominals) developing before all of the in between steps have been accomplished. A lot of our work centered on evening things out so that she could proceed through the normal sequence of gross motor skills. One of the things we had to correct early on was the intolerance for “tummy time.” The therapist said that, because she’d been on her back so much of the time, my daughter’s vestibular system was telling her that being on her tummy was a “wrong” position. To correct that, she had me do a couple of exercises that some of you may find helpful. The first was to carry her around on her tummy as much as possible (airplane ride position). The other was to sit her in my lap with her facing away from me and then gently lean forward with her so she could get used to the feel of leaning forward. These exercises really worked! Once we were able to get her to tolerate being on her tummy, the other skills progressed in order, starting with pushing her chest off the floor, “commando” crawling, regular crawling, and finally walking.
One of the things I’ve found is that, even with a good therapist and lots of nurturing from the parents, some of this stuff just takes time. My advice to new parents is don’t panic! The neural connections in the brain have to develop before the child can progress to the next level and, while you can take steps to facilitate it, you can’t force it. My daughter was nearly two by the time she first started to walk. At daycare, she is in a class with children who are younger than she is but in a similar place developmentally. This has been a positive experience for her as she was also immature socially and has needed that time to catch up. She is now a happy, playful 27 month old who is becoming more agile and expressive every day. While she is still developmentally behind for a child her age, she is making steady progress.
March 24th, 2011 at 11:58 am
My first two daughters were very young when we brought them home. Yes they had there share of delays but outgrew them. They are both now high honor students. We just returned 6 months ago with daughter number 3. She was just turning 7 when I got her and was listed as a development delayed child. An IQ test that showed 48 was given to us. Which to be totally honest shocked the heck out of me. That number was way lower than I had in my mind. So the orphanage video taped her and sent it to us. The video didn’t show a child with an IQ of 48. She was singing, playing and jumping around smiling. So then they came forward and told us that when they removed her from the orphanage for the testing she was scared and cried the whole time thats why it was so low. So we asked that they test her again for us. They did and this set of results were all based on verbal and she came back in the 70′s. Wow big difference and really hard decision to make. Lots of sleepless nights. Not for my decision because I was ready to go get her no matter what but you need to stop and think what would this do to my family? What if she really is that behind would she be a child that my other kids would have to take care of it something happened to us? Our faith got us to go and get her. I did. I was greeted by a child that was very small for her age, 7 years old and 35 lbs. She was scared but came around quickly. At the medical exam they told me she was autistic and it felt like the rug had been pulled out from under me. My family was home and here I was half a world away scared that I just did to my family what I didn’t want to do. I was told that I should bring her to the childrens hopsital in Guangzhou for an evaluation. I was told that the adoption was final in the provence so there was nothing that I could do. I went back to the hotel, appointment for the next morning in hand and skyped home. We were already in love with her so the decision was easy, cancel the appointment and come on home. So here I am 6 months later with this little girl that is NOT what was described to my by her orphanage director. Also turned out her paperwork and someone elses somehow got combined and half of what was on there was not her. Heres what happened upon coming home. She failed a hearing test on one ear, no hearing at all. Turns out so much wax was impacted that it had to be surgically removed. She has TWO lazy eyes, thats right not one but two. so we have been patching an eye a day. They feel that this to will require surgery to correct. She speaks english great. has about 6 word sentences together now. She cant remember anything that she is taught. She can write something 100 times saying the letter but 5 minutes later remembers nothing. Cant tell colors, shapes, letters or numbers. Has been in school for 6 months with some ELS but small small small steps have been made. I have been fighting child development teams from the school district to only now have gotten permission for testing. Has this been tough, yes. Has it been worth it, yes. How are my 10 and 12 year old with her? One is totally fine and the 10 year old is still so jealous of her that they have not yet bonded. Did I bond with her? Yes, but took from Sept to December for that to happen. I was not what she wanted and constantly pushed me away. Took six months for things to finally settle into place. Will she ever learn anything I don’t know but I know that she is happy and safe. Thats enough for me. Now if I could only get her to grow hair. She has only a tiny tiny little bit and no one can figure it out yet…….. but thats a fight for another day.
March 24th, 2011 at 7:11 pm
Our 5YO son was not listed with developmental delay but his file was 2 years old when we reviewed it. Yes, you read that right. 2 years old. He has bounced from list to list to list for 2 years. I know this b/c I have confirmed it in multiple ways.
Long story short, we didn’t ask for a formal update b/c we knew after things fell into place that we were going to move forward to bring him home no matter what.
He was born with tetralogy of fallot and cl/cp *I posted also on both of those threads for heart and cleft*, and we already have a child with both needs, though DD’s heart is more complex in defects. Anyway, we knew and had done enough homework if you will to know of other possibilities.
Fast forward to China and meeting him, and I was terrified of what we had done. I was convinced he was autistic. And it terrified me. I mean this with all due respect and later wrote a post about my feelings which you can read here if you’d like:
http://nohandscurrentinfo.blogspot.com/2010/08/adoption-reality-1-when-your-vision-is.html
Our son was clearly delayed in just about all areas from self-help issues (e.g. potty issues) to fine and gross motor and was basically silent the entire two weeks in China and the first month home. The only sounds he made was his shrieking when he didn’t get his way. It was that bad. And he was 5 years old.
We had him tested by our local school (through the IEP program) and he was tested in the method Eleomama described above. He tested at 1% (yes that is 1% or 99% below normal range) for his age in 4 of the 5 areas. And around 50% in another. Needless to say, the team agreed he qualified but we went back and forth in a good way about whether or not to give him an official DD label in his IEP. In the end, we decided to and this gave him access to many services included 3 hours of specialized PreK 4 days a week. It was VERY HARD for me to let him go, but in the end I had to admit that I couldn’t meet his needs best in every way. I needed help to help him achieve his fullest potential.
Today, 9 months later and just 4 months after beginning the PreK, he is speaking in 6-word sentences often stringed together 2 or 3 sentences at a time, he is asserting his feelings and wants and needs by using WORDS and not grunting/shrieking.
Oh and his gross motor skills have EXPLODED. He could not even walk down a flight of stairs in China. We were terrified in GUZ b/c there were so many stairs and he would literally try to fly down them. He just didn’t understand and then if he tried to do this, he didn’t have the core strength to catch himself from falling.
Now today, just this week, he is SWINGING all by himself. When he first came home, the only swing he could use were the ones at the park (you know with sides all around for babies) b/c he simply didn’t have the core trunk strength to hold himself on a swing. And today, he is pumping his legs and swinging all by himself!
I can honestly say that I do believe he was loved so much. It is hard to put it into words but he was in a VERY POOR SWI that does very few IAs and they just have very little funds. Many APs reported seeing the workers in non-heated rooms (wrapped up and with frost on mustaches) while the baby room was the only heated room. Now I have photos of him wrapped profusely in the winter, but i just see so much love in him that had to have been given. I try not to compare but DD was in a *model* SWI and was so neglected and we are continually working on attachment and using strategies and therapies to stay on top of it. The contrast in attachment has been sharp and I think unconditional love is underlying (or the lack of it in DD’s case).
There were two undisclosed needs besides the DD, but on the DD I’m not sure he was when his file was created at 2 years old. The other needs were visible but are seen commonly enough that perhaps they didn’t feel the need to share? I’m not sure but at least one of them has proven to be part of a larger issue (structural ear deformities with hearing loss).
Well this post has gotten long, so I’ll just end it by saying that a child who is SEVERELY delayed can certainly make HUGE strides in a very short amount of time. I have no idea where DS will land, but I know he’ll go far!