A friend going through a tough time asked me to post her question here; she'd like to get as many perspectives as possible from other parents of kids with special needs so please, read and share your thoughts.
"My husband's negativity is really hard to deal with. He refuses to get hopeful about anything regarding our two-year-old, who has developmental delays. I was recently showing him a new app and getting really excited about using it with her and all I got from him was, "IF she can use it." We got her a tea set for the holidays this year and his comment was, "She'll NEVER be able to understand how to use it." Pretty much everything regarding her needs and future is like this with him. I know he's being defensive and doesn't want to get his hopes up in case she truly is unable to do something, but it's not fair to her to have to prove everything to him. It's also exhausting to be her only cheerleader. I'm seeing a therapist, but he refuses to. How can I involve him—and show him that every teeny step made is huge progress?"
First of all, I am so saddened that you are your daughter's only cheerleader. That's not fair for you and especially not for her! As for his attitude, I'm wondering how much time he spends with her -- caring for her as well as just interacting with her. Maybe more time, especially just having some fun, might help him understand her better. You kind of hinted at it, but maybe his attitude is primarily a defense mechanism. There's more healthy ways to cope, for sure. I'm wondering if he has anyone to talk to (besides you) about his daughter - a friend who "gets it", another SN father, a religious leader, a therapist? Lastly, and I know this may be tough to consider, I'm wondering if you have an accurate view of your daughter. I know as a mom, I always want to think the best (maybe even better) of my kids and feel particularly defensive about my 17yo daughter with CP. Would the person who knows her second best (to you and not your husband) describe your daughter in a similar way to you? I think it's important to look at this from both angles. Just a thought. Regardless of your perspective, NEVER give up your positive attitude. -- Sending support and much love!
ReplyDeleteHe's dealing with a death of the dream he had of what his daughter was going to be like hopefully in time he will dream new dreams for her.
ReplyDeleteI agree. It is a "death" of dreams. That is difficult for some to understand, but it is the truth. Once he allows the "death" to happen, then he can birth new dreams. Sometimes it is easier for some to see they need to "Alter Their Dreams" instead. Men usually need permission for this to happen.
DeleteI agree with this. He's grieving right now. Once he sees that she is growing and improving, he'll get out of this doom-and-gloom funk he's in.
DeleteFROM A DAD'S EYES
ReplyDeleteAs a Dad, I can hopefully give you a window of perspective. I found out our daughter was going to be born with DS. That is visual, a bit different than developmental issues. To be honest, that can be a bit easier for a Dad to deal with because he can see "difference." Men are very "factual" and the visual makes a bit more "factual." This is not perfect advice, but hopefully it will help.
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Knowing another story similar to this one, a husband was not accepting the fact his son was Autistic. The wife understood and embraced the diagnosis immediately, but not the husband. The husband would not accept it. He was a hard nosed man and was in denial. Men have chromosome imbalance too, PRIDE. Yes, there is a dream that is destroyed in their eyes. They need to be given permission to dream new dreams. In this situation I am talking about, it took one of his buddies to come alongside of him and tell him, "Bro, you boy is Autistic. Accept it and move on. It is not a bad thing. All of our kids have something a bit different. It's okay bro."
It is a very difficult place for a wife to be in. Many times the wife will feel like their hands are tied, leading to frustration in a marriage. Wives, DON'T GIVE UP! Consistently love your child and your husband. Us men are a little slower and thick headed, making us a little harder to deal with. But I want to encourage you, when your husband accepts it, he will EMBRACE it and become a HUGE advocate. It might take him longer than you want, please be patient.
Wives, you ROCK! Literally, you are a ROCK in these situations until your husband comes around. I pray that your husband has another man who will come alongside of him and punch him in the face to see straight. Men are not very receptive to women or wives in these situations. I wish it were different, but most of the time it won't be a woman involved. Sorry, us men are a bit STUBBORN sometimes.
Exactly, well put Jared.
DeleteI think moms in this situation are most comforted by being eternally hopeful, while dads find comfort in being realistic/literal. Obviously as the original poster said, we can take this way too far. Meaning, a dad finding comfort in staying realistic can seem to his wife and others as being callous. I think the struggle is that it is much harder to stay hopeful and avoid the trap of realism turning into pessimism. But, I think moms can help their husband be more hopeful, and dads help their wives stay grounded. It really takes a combination of both along this special needs journey.
I don't have any other suggestions other than using each other's strength to support the other's weakness. Oh, and in case you haven't heard of it yet - have your husband read "Welcome to Holland". It really helped me put things into perspective.
This dad is heartbroken. He's not wanting to be "negative" as much as he just doesn't want to get his hopes up, or worse, have his wife get her hopes up, only to be disappointed if it doesn't work out. I say give it time and don't take it personally (easier said than done), and as this child grows and she does make improvements; he will naturally start to become more hopeful. He's just very guarded right now,
ReplyDeleteTime will help tremendous. Well said Tony.
DeleteThis is is going to be hard to say as this is going to make me a huge hypocrite but I think your husband is a lost cause. I know you didn't give much information about him or details about the situation but just going of what you said he seems to be coming from a totally different place than you. she will be more supported really- having parents separate because she would be able to voice her frustrations to you about him and vice versa and get separating points of view without you two having to come across as a united front. Staying with him im afraid will only going to lead to frustration and heartache, unnecessary for you down the line. I say cut your losses while you can, but then again I could just be giving advice to myself because I'm in a situation somewhat similar yet also not.
Deletethe best of luck
I'm sorry, I just have to reply. Tour anyone else reading this in a similar situation, don't give up on your husband because of this, please! 2 years is hardly enough time to have an accurate diagnosis and process all the associated emotions for some. Being a more present parent sometimes, mom's see little clues to potential and ability which sometimes aren't as clear to the other parent. My husband didn't really start to turn a corner until our SN son was almost 4 but there are so many layers to it; lack of exposure to SN kiddos and adults, the needs of 3 young kids, high pressure job, being primary breadwinner, his childhood homes ideas about Sn. my SO wasn't ready for therapy until our son was 3. And we went for each other, for our marriage. It was very helpful for us once we went, but I believe that like anything, therapy/counselling will only work if you are ready to hear it and do the work. Please don't stay in an abusive situation, and feel free to leave your spouse for any number of reasons,but if it all boils down to this issue, try to give it more time.
DeleteOne of the most relevant things our son's neurologist commented on early on in our visits was that parents deal with things in their own way. I always try to keep this in mind as my husband also tends to be more "realistic" (his perception) or more "negative" (my perception) of our son's prognosis. Unfortunately it can be very lonely at times. I was able to find some peace through therapy as well as finding specialists that also believed in my son's potential. My husband has come a long way and loves our son very much. But I wish he had been willing to try therapy early on to help him through the grieving process.
ReplyDeleteMy husband and I have faced my sons challenges both separately and as a team. I have spent a lot of time working with a social worker who guided me in helping him when he needed support and wouldn't or couldn't seek the support other than me, and it is exhausting. We are far enough along now that we live in a fairly positive house, but it is an effort. Grieving every milestone means increased effort for both of us, including calendar notices to be positive and have patience. No joke. It's on his calendar every day.
ReplyDeleteI'm the friend that Ellen posted this question for. Thank you all for your words, wisdom and support.
ReplyDeleteOur daughter suffered a prenatal stroke that impacted her entire brain except her brain stem. Despite the insult she's bright, engaging, hilarious and a joy to be around. We don't know the full cognitive implications of the insult nor the physical. Her neurologists can't give us any answers on what the future holds for her. What we do know is that we have to hope and push her to reach her full potential - whatever that may be.
My husband is incredibly private about his feelings. Even with me. He guards himself like a dragon guards his hoard. He refuses to talk to anyone about how he's feeling about the situation.
Jared, thank you for your words. I will continue to try to be patient, encourage him to just play with her and enjoy the child he has, and boast to him and anyone who will listen about the new things she's learning. The latest is that she's trying to say "hello." Hearing her little voice saying "ago?" is one of the best sounds in the world.
Again, thank you all for chiming in. It's reassuring that I'm not alone in this type of predicament, despite it seeming that I am.
My daughter is undiagnosed. She is severely delayed for no known reason. Because we don't know what to expect we both have very different outlooks. I wrote to you below, but I just read this and wanted to add that I pushing her to her full potential is paramount. But maybe the fact that your husband is so private is the reason he cannot be the cheerleader. Maybe he is afraid of breaking and not being able to be strong again? I know I struggle with that myself
Delete@patientlywaitingrock... Can I suggest one more thing for you? Keep your eyes peeled. Watch and observe your husbands encounters with your daughter. Since he is more private with his emotions/feelings, he will likely express his softening heart in private. Watch from a distance. When you see him softening, you will know that you can push or involve him a little bit more. He is a man, but men are very fragile. They can be a ROCK and a great CHEERLEADER, but it will take time. Slowly lead him along. You will see signs that he is getting on board.
DeletePut this on your heart, your walls, your phone, and everywhere else. "When He Arrives, He Will Redefine GREAT"
Wow. After reading this, plus some of the comments below, it reminded me of a story.
ReplyDeleteSeveral years ago, when I was 21 {I'm now pushin' 30!!} I met this guy who lived in our old neighborhood. A bit rough-around-the-edges, his favorite expletive was--let's just say it starts with an "f" and ends with a "k"--he said it every over word. This neighbor had a Beautifully Unique daughter named Phaedra, whom I had been getting to know. She has cerebral palsy. I never spoke with this guy before, but one day we were alone, Phaedra playing on the park structures. My goodness did he need to talk!! Oh. My. Goodness. Because, aside from every f-bomb, he expressed his deepest, most profound thoughts. About Phaedra's challenges. This father--who had soul--simply needed to talk. And--tag!!--I was it!! We were friends after that!!
Perhaps all he needs is people to share all of his thoughts/feelings to--like Phaedra's Dad did--preferably someone who's life has been touched by "special needs". Because they "get" it.
--Raelyn
I can only tell you what worked for us. When Boo was born my husband was in denial. First that there was something wrong and later that not knowing what was wrong meant that she "would be fine" or "grow out of it". To be honest with you, he struggled a lot. He wasn't trying to be negative or unsupportive. More (to my mind) he didn't want to be disappointed and if you don't hope you cannot be.
ReplyDeleteWhat ended up happening was that he started attending her therapy appointments alone. PT / OT / SPT. Her therapists were awesome at getting him involved and now he is her biggest cheerleader. He still cannot handle the doctor appointments, and that is okay.
I know it is so hard because you feel alone. That since he appears not to be supporting your child he isn't living up to his end of in sickness and health. But I think it is harder for men. They see themselves as the protector and the one who should let nothing happen to their family. They (at least mine) have this feeling that the child should be perfect. And it takes them a while to realize perfect has many definitions.
So I suggest that you make him get involved. Trick him, if need be, say he has to take your daughter to PT today because you have something you cannot get out of.
He might just surprise you. Good luck
I think getting him involved in therapy is a great idea. Means he will get used to concentrating of the smaller challenges/achievements so that progress can be celebrated in the context of your individual child, rather than comparing her to other kids her age. I am so proud of my 4 yr old for managing half a word that her 18 month old brother can say fluently. We adapt.
ReplyDeleteWith my husband, we go through stages of being more or less hopeful, sometimes I am the despondent one and find energy lacking. Funnily enough, when I am down and feel we are treading mud, he tends to spring to the rescue and point out the global progress she has made. Reverse psychology I guess, we tend to balance our partners by sitting on the opposite end of the seesaw. Perhaps sharing your own fears and disappointments might make it easier to find middle ground with your husband?
This is a pretty good idea Lynn. Sometimes men respond when wives express their weakness, frustration, or pain (don't go overboard though). They come alongside and want to protect. Maybe if he protects the wife, it will slowly creep into protecting the child.
ReplyDeleteIf a wife acts like she has it all together and is embracing everything, the man won't feel the need to protect as much.
Anonymous - I want you to please put this thought before your husband:
ReplyDelete"Our children are only limited by OUR expectations of them."
While every person mourns the loss of the child they thought they would have in their own way, two years of negativity could be causing damage to the progress your daughter could be making. What would be different if he put the energy he currently puts into limiting his hopes into pushing your daughter's upper limits?
Two stories. First - my younger sister suffered a massive stroke and brain hemorrhage during birth. The hemorrhage was so bad they had to do immediate surgery. In this surgery they REMOVED much of her frontal, right lobe. Removed. Gone. It ain't there. Because of the amount of damage, my sister also developed hydrocephalus - water on the brain. A shunt was put in to drain the water off, but not before my sister had developed a bit of a "pumpkin head" and yes - this pressure on the brain may well have done further damage.
BUT - my parents (who had been told my sis might live in a vegetative state for the rest of her life) made the choice to not treat her differently than any other child. Sure - my sis reached milestones later, but she reached them.
My sister is currently 35... and she's a doctor. No - that is not a typo. She has a doctorate in developmental psychology and has been a professor at 2 very highly regarded universities.
Story number 2: My daughter has Trisomy 21 (Down syndrome). But after the way I was raised, why would I treat my kiddo any different than any other kiddo. Why would I GIVE UP on her just so I would not feel let down by her? I wouldn't. Period.
Click Here to see a video of my kiddo READING at age 3 years 2 months.
Please - Ask your husband if, in his heart of hearts, he wants to help your daughter, or hurt her by holding her back with his lack of faith in her? ANYTHING is possible!
Oh - one more thing... we didn't drill our daughter on the reading. I bought that "Your Baby Can Read" DVD series and just played the DVDs in the playroom while she was playing. That was it - LOL! She's 7 now and reads like the dickens!
ReplyDeleteIt's like beginning band. No one can play The Rite of Spring when they first pick up their instrument. You have to learn how to produce a tone, assemble and care for your instrument, perfect your embouchure, learn how to read music, and practice. Every step in musical growth is progress. When you don't confuse E with G, it's progress. When you can play a concert B flat scale, it's progress. When you play at your first concert, it's progress. No amount of progress, no matter how small, is to be overlooked.
ReplyDeleteEveryone's comments are great. One thing I would add is that you need to find your own network and outlet (it sounds like you are already doing this with therapy). My husband was impossible to talk with, though not necessarily negative, and it was extremely hard for me because I needed to talk about our daughter's diagnoses and progress. I found friends and family who could help me by listening. This helped me be less frustrated with him. You may not be able to change your husband, but you can find healthy ways to help yourself!
ReplyDeleteCelebrate every achievement, no matter how small! Even a smile is a gift!! I don't mean to sound overly optimistic, but no one gets a guarantee in life. Who told him he was going to get a perfect daughter? No one! Many people never get the chance to have a daughter at all. She is the daughter he was given, and he had better hope he can man up and be the dad she deserves. Sorry, did that sound too harsh? I know it's a rough road...one step at a time. http://www.examiner.com/special-needs-kids-in-los-angeles/rosie-reeves
ReplyDeleteI have an autistic son a belive me at times I look at him n dont want to accept the fact that he is sick or that he has a disability at times its really hard I ask myself why me at times I loose it n just start crying cuz I wish my son was normal I wish he can do normal things n play with kids or talk to me have a conversation with me but I know he doesnt have the language I love him to death would do anything for him my worst fear is loosing him in public places cuz he does wonder im just really scared
ReplyDeleteFYI Anon your son is NOT sick or autistic. Autism is NOT a disease and we dont use the word autistic! Please stop thinking your son is "not normal" its unhealthy really unhealthy. What is "normal" anyway? Andrew same goes for "disabled"... which is a AWFUL word.
DeleteI'm autistic and I think banning the word is a form of denial. It is widely accepted medical terminology, not an insult/swear word. It's like putting the term away to deny its existence and effects, both positive and adverse.
DeleteLots of great comments and ideas here. I'd like to add one that might be a bit of a longshot. It might help your husband to meet adults who have disabilities that are similar to your daughter's. This is especially true if they are fairly independent and obviously happy. Young people with disabilities can benefit from disabled role models, but parents, too, need objective evidence that others have tread the path their child is on. Otherwise, expressions of optimism and positivity can seem unmoored to reality … airy and abstract. If as some here have suggested your husband is literal-minded and concrete, do what you can to supply him with positive evidence. Also, if he's a problem-solver, get him solving actual, practical problems your daughter faces.
ReplyDeleteHi!
ReplyDeleteMy husband said that our son will never talk 2 years a go, I just ignored his negatives comments and told my self I don't need that, now our son talks 3 languages at 4 yrs. My husband laughed when i bought my son 25 piece jig saw puzzel , my son did it in 15 min, now he does them in 5 min! my husband said your son will NEVER be toilett trained, he is in pants now . They said to me that my son is not ready to sit at circl time, now he sits 5 songs, the list go on! just NEVER give up! I have no one to talk to from friends , luckily I have avery supportive family but they live in NZ while i live in europe. Regardless what is the reason , don't be affraid to raise your voice , never tell your child his dad doesnt love him or believe him, its not easy, it takes time but children are amazingley clever .LOVE and motivation is the key for your child. I really hope it works for you because children love their parents and even if you end up the only cheerleader, my advice is to make sure that the child is not psychologically affected by his or her dad issues! make sure you have some sort of back up plan in your life, good will and a close family member always informed. I dont have exact answer as to origins of some parents negativity but I just want you to continue supporting your child and Not get affected by unnecessary comments from your husband ie do not let it get to you! and make sure you protect your child if those comments continued coz children understand not dumb!
you may talk as long as you like withyour husband and show evidence etc but do not waste your energy and get upset about it! because if your husband is not ready then he wont listen! unfortunately thats my case, he finds faults in every progress we make, in every independent special need adult he meets, etc! Just to be prepared to continue loving your child and protect them! What worked best in my case is to talk / argue less about the subject, stay positive, give your husband and yourself some no kids time , treat your kids equally, NEVER give up, your kids health and happiness is number 1 and never compeomise that for someone else but dont forget to have some free time and talk about other subjects!
ReplyDelete