(Closed) Words of wisdom for parent of child w/ special needs?

posted 6 years ago in Parenting
Post # 3
Member
4755 posts
Honey bee
  • Wedding: May 2012

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
Member
2638 posts
Sugar bee
  • Wedding: November 2006

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
Member
366 posts
Helper bee
  • Wedding: March 2013

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 # 7
Member
2095 posts
Buzzing bee
  • Wedding: September 2011

@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
Member
5295 posts
Bee Keeper
  • Wedding: January 1993

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
Member
366 posts
Helper bee
  • Wedding: March 2013

@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
Member
10287 posts
Sugar Beekeeper
  • Wedding: October 2011

@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
Member
240 posts
Helper bee
  • Wedding: September 2012

It takes an amazing set of people to adopt a child with special needs. Kudos to your sister and her husband. Smile

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
Member
198 posts
Blushing bee
  • Wedding: August 2008

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
Member
1498 posts
Bumble bee
  • Wedding: April 2014

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!

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