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How do you deal?
DD has major sensory issues. Also speech and developmental delays. We have an OT, DT, and ST meeting with us about 4 hours a week. She's in the process of being diagnosed and they thing we may be dealing with Aspergers. Anyway, this isn't really the issue.
The real issue is dealing with my parents. We're really struggling with this and our parents are basically turning a blind eye. Every time we try to discuss anything with them the brush it off like we're making something out of nothing.
Seriously, they just tell us she's normal and people "now a days" want something to be wrong with everyone.
I guess I just want to know if anyone has gone through this? What do you say and who do you lean on for support?
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Re: How do you deal?
We've actually been very lucky with our families. We don't live near any family but my MIL is a special Ed. TA so she has been a huge resource for us. My DH's cousin has aspergers so we've been able to connect with DHs Aunt in regards to things as well.
My side of the family has little experience with SN of any kind. So, when DS1 got his autism diagnosis I was concerned about how my father would react. When we visited last (before the dx) my father commented to me that he didn't realize how serious DS1s behavior concerns were just from me talking to him about it. He really had to see it to understand (the day DS1 got out of my dad's house and we found him wandering three doors down was a real eye opener for my dad) why we were so vigilant with our then 2 year old.
Our friends have been another story all together. With one exception we've pretty much been abandoned because it's very difficult for us to be as spontaneous as they would like us to be (they don't have children).
I can't imagine how hurtful it has been for you to hear that you are making this up.
I guess my only advice is hopefully over time he will understand how concerned you are and that it's not for a frivolous reason. It sucks when you can't talk honestly to those you are closest to, especially those who are supposed to love you the most. I hope they come around, and quickly.
It is always easier to dismiss something new or uncomfrtable than deal with it and change your lifestyle/mindset. Most people go the easy route - denial.
Unfortunately you cannot since you have to live with your LO's struggles and delays daily and cannot deny them.
I say embrace your parents' denial if you can. Do not discuss issues or concenrs, but do include them in your LO's life. I know that friends/family (his dad) treating DS as 'normal' actually has its benefits - they do not overanalyze DS's every step and every issue, just roll with it, wheras I look for a 'strategy', 'reason for this behavior', etc. Took me 1.5 years to come to this.
GL!
We're in the evaluation process as well, and DH and I have decided to keep things mostly to ourselves until we have a diagnosis.
My family has very little first-hand experience with SN. I'm really not sure what their reactions will be, but I do feel like if I'm telling them, "I'm worried about X behavior," their impulse will be to tell me I'm worrying too much and she's fine. If instead I'm saying, "we've had DD1 evaluated, she is diagnosed as x," I think they'll accept that more readily. Maybe! Or at least I can say, "these professional back us up, we're getting her therapy, the end."
Plus, all of our family is 1,200+ miles away, so we really don't have to tell them until we're ready -- and we pretty much have to build our own support locally anyway. It's not like we're asking them to do childcare while we're at appointments, or that they see DD1 often enough to know that something is off.
We have talked about it with people we know will understand. DH has talked about it with some co-workers who have SN kids. We've both discussed things with my SIL, who has a one-year-old son with a rare genetic disorder and who has been through the wringer with him. (Which is also the reason I think the news won't be a big deal for DH's family, because there's already one SN kid in their very large family.) SIL has been a great emotional support. And I met a local mom that I've been doing playdates with; her DD is the same age as mine, but was a 25-week micro-premie with some lingering issues around her ability to eat. She's been through the system locally and can offer me perspective and advice.
Plus, her DD is quite typical socially, and that's great for my DD to be around; and her daughter watches and imitates my typical eater, so it's very win-win.
DD1, 1/5/2008 ~~~ DD2, 3/17/2010