Madeline was diagnosed with Tourettes Syndrome, ADHD, and OCD at the age of eight with me and my husband at her side. It’s been two years since that day and my husband has yet to let the word Tourettes pass through his lips. We never talk about it and I’m sad about that.
We have very different ways of coping with difficult issues. He’s a wonderful husband and father but the difference in our coping skills has become a sore spot in our marriage.
I’m very open and expressive about Madeline’s neurobiological issues. I need to talk about what is going on with her in order to help me process and cope. I also educate myself on and seek out every possible treatment for TS and its comorbid disorders. It gives me some control over something I can’t control.
My husband is big on “mind over matter” type of thinking and that not thinking about something makes it go away.
I call it denial.
I don’t cope well with his stick-his-head-in-the-sand coping style. I feel so alone. I hate that I turn to my sister and close friends for support with Madeline’s issues. It bothers me that rather than deal with the issue at hand he tells her (and himself) that she will grow out of it.
What if she doesn’t outgrow it?
The last thing she wants to hear when she’s struggling to cope is that she will grow out of it. That’s a long time in a child’s mind. Then there is the pressure from her daddy being hopeful that her “problem” will go away.
She is embarrassed to have him see her tics and I worry about what will be the long term effect of his denial on their relationship.
Talking to him about it helps temporarily, in particular during times of great stress for Madeline but I have to give constant cues and direction to help prevent the two of them from completely misunderstanding each other.
I try to understand that this is just the way he is. His entire family has the same kind of coping style. Sometimes it works out and sometimes it doesn’t. In the meantime I hold onto my faith that their otherwise good relationship and our marriage will survive his denial.
How do you and your spouse cope with the diagnosis, treatment, and day-to-day care of your special needs child(ren)?
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My 4 year old daughter Kayla has Down syndrome and autism. My DH doesn’t deal with “it” either. He doesn’t come with me to support groups or doctor appointments or IEP meetings. He doesn’t read the books or scour the internet for information.
I don’t think it’s necessary denial. He doesn’t think Down syndrome and/or autism are big deal and doesn’t feel the need to be part of the whole disability community. He just sees Kayla for Kayla and not her diagnoses. And that’s not necessarily a bad thing.
Our daughter has Down syndrome. From the beginning my husband and I have been open about the diagnosis and joined the local support groups. Although I am more involved and attend more meetings, it is only because he tends to be busy with work. It’s not because he is not involved. I can understand your concern about how your husband is handling your daughter’s diagnosis. It would seem to me that talking about it would be better than keeping it inside, but that’s just how I handle things.
My daughter has Down’s Syndrome, but then I guess it’s not a condition you can deny. Autism, OCD and Tourettes are not “visible” in the same way. Unless you’re observant, it’s not immediately obvious a person has these conditions.
However, even with the DS, I often forget Meg has it. The fact is it’s only a part of who she is, and certainly not the defining part. In the end, to me, Meg is Meg – a unique individual with her own characteristics and traits.
It’s not denial, if anything it’s a deeper acceptance.
But perhaps your husband hasn’t really accepted the Autism, OCD and Tourettes. Perhaps he ignores it for other reasons.
There’s no doubt, for many men having a child with a perceived disability can be a blow to their sense of masculinity, which is an extremely hard one to acknowledge or face up to, especially as most men are not the type to chat about it to their friends.
However, rather than face that one head on, better to appeal to his natural protective side. He wants the best for his daughter, but might not really know how to provide that. He may well believe that drawing attention to it only reinforces it. Perhaps he needs to hear the opinion of someone he respects that a change in his approach will benefit Madeline better.
I’m so sorry to hear that you are not able to come together on this issue. My husband and I have assumed different roles in our handling of Michael’s diagnosis and the extra work that comes along with it, and I know how frustrating it is when he doesn’t “get” something I am trying to tell him about. For us, it seems to come down to the sheer amount of time I am immersed in it.
I’m sorry you and your husband are not on the same page. Must be very difficult. I don’t have any brilliant words of wisdom.
I am a single parent. I became single when Tristan was about 12 months old. The reason we broke up was mainly because he never participated in any part of raising the children. Never spoke to a single Dr, teacher or therapist. I did all the research and when I tried to talk to him about anything he used to tell me I talk too much. Our 4 year old son has Down Syndrome and our Daughter has had unexplained seizures since she was 12 months old. I figured since I was doing it all I might as well leave. Then I wouldn’t have to be angry all the time. So I did. He sends them money and calls once a week but to this day doesn’t play an active roll in decision making or parenting.
Fetal alcohol syndrome can be invisible, (and is in our son’s case until you spend time with him or know subtle physical attributes), as is autism to unknowing eyes. Wil’s CP has always been undeniable. There was a period of time my husband didn’t seem to accept “things” and parenting the boys was extremely difficult.
Eventually we both got “in the same book, then the same chapter”, but we are not always on the same page. But it is not usually over major issues.
Hoping the coping strategies mesh for you guys.
Kristie, I’m so sorry that you feel so alone. Fortunately, my husband is not in denial, and he actually deals with my son Christopher(now 6, diagnosed with Autism at age 5) and his meltdowns a lot better than I do. But we both accept his issues and are doing everything we can to make sure he gets the therapies he needs to progress.
But actually, my dad, Christopher’s paw paw, is the one that is in denial. He gets upset when we discuss it, and thinks he will just grow out of it. He actually took care of Christopher, along with my mom, from birth until the age of 2, so that I could work. So Christopher holds a very special place in his heart, and I think it really devastated him when we found out what was going on with him. He has accepted it to some extent, but like I said, he doesn’t like to hear other family members discuss it, he gets offended.
The other day he pulled me aside and told me that I shouldn’t mention the word Autism in front of Christopher because he didn’t want him to feel like he was different. I told him, that my husband and I haven’t made a decision yet as to whether we are going to tell Christopher about his Autism, and that eventually, we may have to, and we will cross that bridge when we come to it.
Krisite, thanks for being so open in this post. My daughter Myah (5) has a rare chromosome deletion. When she was first born my husband and I BOTH had a very difficult time coping at all. As the years have gone by I’ve realized we cope differently, but sometimes the same.
Because my husband’s job keeps him away so much, he hasn’t had to experience the intensity as much as I have. He gets glimpses of it when he is home, but I have to explain so much to him.
I wouldn’t say he is in denial, I just think he doesn’t express his emotions very well (in all aspects of life). He loves Myah so much, and he has great patience with her…most of the time, but when we discuss her actual disibility he struggles. Although, there have been times I have found him with Myah in his arms,kissing her and crying–and he is not a crier! This gives me comfort and makes me think he gets it, I think.
As for both of our families, we struggle with how they act and cope with Myah. I don’t think they understand Myah or us and sometimes it feels very lonely.
I’m sorry you’re going through this. You and your husband will get through these times. My husband and I have been on a roller coaster ever since Myah’s birth. I think that’s part of having a special little one. Right!?