Post # 1
My sister and brother-in-law adopted my niece from China a year ago. At the time of adoption, she was 1 1/2 years old, was significantly underweight (she fit into 9 – 12 month clothing), dehydrated, could not walk or talk, had a cleft palate, and could barely drink a bottle. They had to use bottles w/ drop-in liners and use something to gently push against the liner as she ate since her ability to suck in order to eat was so poor.
Fast forward a year. She has been in treatment with speech, occupational, and physical therapists. She has gained weight (she’s still a little small for her age, but no where near as small as she was when she first came home), can say 4-5 words, has had her palate repaired, can eat baby food off of a spoon (and is just now beginning to show interest in feeding herself), and is a pro-walker. My sister took her this morning for her 1-year post-adoption check-up today and the news was not good. The surgeon and speech therapist were very concerned that she isn’t using more words (she babbles up a storm, however). They have recommended more intensive therapy, and now my sister feels like a complete failure for not placing her in more intense therapy earlier.
I just got off the phone with my sister and she was heavily sobbing. I’m at a loss of what the right words are to say at a time like this. I love my niece so very much — her being severely developmentally delayed definitely would never change that. But I feel like I just keep saying the same things over and over to try to comfort my sister. I understand that she is so worried about her development, but I am also trying to remain optimistic that yes she is delayed, but that doesn’t mean she won’t eventually catch-up (or at least develop rudimentary communication skills). I’m worried that me being optimistic is upsetting her.
I’ve never had an experience parenting a child with special needs, and I’m just trying to find the right words to say. I was hoping there may be a few people in the Hive who have parented a child with developmental delays who could help me find words to help comfort her. Is being optimistic the wrong approach? Should I just be quiet and let her cry (I mean, I do that to an extent but I feel the need to say something)?
Any and all advice welcomed. She has recently decided to seek therapy to process some of the emotions she’s experienced (I’m strongly encouraging that) but that doesn’t relieve me of my role as her sister to try to be there for her emotionally.
Post # 3
Stop being optimistic. I’m the sister of a special needs older bro. It would piss me off if someone kept saying he’ll get better, or be normal (and the like). I know it’s not meant to be mean, or hurtful but it’s recieved as: he’s not normal and therefore not worthy of a good life like us normal folk.
Instead of focusing on what she can’t do or how bad she is at some things say how great it is since she’s in therapy or how much she learns from month to month or day to day.
Volunteer your help, time, and engery to your sister. Go to the speech therapist and ask what new things they are doing to help your neice and you can get in on some of the learning.
Support and help means more than optimism.
Post # 4
I think vmec’s advice to get involved and try to help/do your part as an aunt is good. Instead of telling her that you think your niece will one day be “fine,” just reassure her that she has a soft place to land someone people who really love her and will love her niece no matter what. On some days when she’s stressed or if therapy is in the evenings, maybe dropping off dinner or having something delivered to them might ease the stress just a little.
I’m sure your sister knows that you are trying your best and want to be there for her. That counts for a lot!
Post # 5
I have a friend who’s daughter has many many special needs and her biggest pet peave is when people try and compare her child to a “normal” childs progress. She is two years old and only barely took her first steps without a walker to aid her. That is a huge achievement regardless of the fact it is way behind other children’s development. So be there for her and celebrate with her the day to do achievements. But never say that eventually she will catch up because that is not always the case and just throws salt in their wounds.
Hope that makes sense.
Post # 6
I guess by being optimistic, I’m trying to focus on the progress she’s made so far (walking, feeding, saying a few words, engaging better with people, showing separation anxiety now, etc.). I’m not trying to say that she’s eventually going to catch up and be doing everything her age-matched peers are doing. But I’m also trying to balance that with being kind and supportive — she’s scared enough as it is, I don’t want to make it worse by focusing on what she isn’t doing.
This is also hard because I live out of state. I stayed with them for about a week after they came home from China, stayed with them a few times over the past year, and am already planning a few weekend trips there this summer. When I’m there I try to cook, clean, help with her care, etc. as much as I can to try to ease their burden. I’d love to live close enough to be able to just drop in with dinner or take the baby to her therapy appointments, etc.
Post # 7
@vmec: Where did she say that the child wouldn’t be “normal”? She said she was being optimistic about her progress. Those are two different things.
I think just being there for her when she is having down time and reminding her that she will do things at her own pace is probably the best thing. If she needs more therapy then she needs that extra boost. There are many ways to give support without getting giving false hope. And remind her of how far her daughter has come already.
Post # 8
I would think being optimistic about her progress and potential is much better than the alternative. I can’t possibly see what would be offensive about focusing on her achievements in relation to her (not other kids) – (walking, feeding, saying a few words, engaging better with people, showing separation anxiety now, etc.)
Especially if you aren’t able to see her in person often – when you’re around someone all the time, it’s hard to see change. But for you to visit after a couple months and say ‘wow, she’s so great at doing x!” I would think that would a good feeling to the caregivers to know that the therapy and all their care is making a difference in this little girl’s life.
Post # 9
@hisgoosiegirl: I agree, being optimistic is good as long as you are careful with how you say things. If you say “I know she’ll get there eventually”, while being optimistic this probably would be taken the wrong way. But if you say “look how far she has come”, that comes across much kinder.
Post # 10
@hisgoosiegirl: I agree.
I think being optimistic is really all you can do. What’s the alternative? Making it painfully obvious to your sister that her daughter is so far behind and not achieving the goals like she thought she would? That’s not going to help anyone, whether it’s true or not. I don’t have first hand experience with this but I’d say just being a support system for your sister and niece would be enough. Your sister knows that there’s not much that you can do for her. Just stay positive.
Post # 11
It takes an amazing set of people to adopt a child with special needs. Kudos to your sister and her husband.
This little one has only been here a year and it sounds like she has made tremendous gains!!! Definitely focus on what she can do, not what she isn’t doing. I know that’s easier said than done…..Also recognize that there will be times when it’s best to say nothing at all. These parents just need to vent!
With children who have global disabilities, speech is the often (not always) the last thing to come in. I explain it to parents like speech being the finest fine motor skill that there is. All of the small muscle control involved with talking is quite complex and the last thing to be fine tuned. The goal is to improve overall COMMUNICATION and that doesnt have to involve actual speaking just yet. There are ways for your niece to make her needs known that to not involve speech.
If they are not already taking advantage of their local Intants & Toddlers Program, they should make that referral ASAP. Services are often free or very inexspensive.
I am an early intervention speech pathologist (birth to 3 years old). Feel free to inbox me with specific questions. I’m happy offer suggestions.
Post # 12
OP: You’ve recieved some good advice, especially from KallahinBaltimore. Regarding your sister feeling badly about not doing more intensive therapies…I have several friends with children with CP, autism, and down syndrome so a different situation than that of your sister, but they also feel the tension to do more interventions and therapies. Without a doubt the interventions are important but so is spending time appreciating their children and being a family, just being together and having fun and NOT always doing theraputic work, sometimes they have to push back against their doctors/specialists to protect family time (and they have been fortunate that their teams are receptive). I don’t know if your sister would be receptive to the neurodiveristy movement but many of my friends (not all) who have kids with special needs have found that movement to be empowering, their kids are all older though (3-9).
Post # 13
I don’t think being optimistic is bad…but I do think there are certain things that people sometimes say meaning to be optimistic that can actually hurt the parent.
My son was almost completely nonverbal until after he turned 2. After almost 2 years of speech therapy and at-home work, he now has an age appropriate vocabulary. Cognitively, though, he is still delayed.
He’s improved by leaps and bounds but sometimes I still get overwhelmed. Autism is a scary world sometimes. Fiance is great about reminding me of all his progress and that helps me to adjust my focus when I feel stressed or feel like I should have done/should be doing more. That type of optimism is very helpful.
What is not helpful is when people say things like “I’m sure he’ll eventually catch up.” I know they mean well and they may very well be right. However, I do not have the luxury of being so sure. I have to plan for a future that may or may not involve my child living dependently with me for the rest of our lives. While I do want to hear all the positive things you love about my child. I do not want to hear your predictions for his future.
That brings me to another thing that I think is important for parents of special needs children. They need a moment of greiving. Big or small, we all need a moment to let go of all those preconceived notions we had before we had children. All the images we had about school and sports and dances and colleges and grandchildren. We need to mourn the release of all of those expectations. It isn’t so bad, though, because letting go of all the expectations opens your heart to a whole world of possibility where nothing is taken for granted!
Be supportive of her. Encourage her as a mother and remind me that parenting is hard, hard work. She did what she thought was best adn that makes her a good mother. Let her know its okay to feel upset at the thought of losing those preconceived dreams but also remind her that you are excited about all of the possibilities your neice has!