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Special Needs
The Housewife
member
I'm new to this and completely confused
The Housewife
member
I apologize for the length. Im trying to just get to the point. I dont want to write an essay, or be to vague. So I'll answer any questions.
How important is a diagnosis?
I'm really having a battle here with myself. DS recieves services from EI, and now ChildFind for an expressive language delay. He had tubes placed in April 2011 (fluid caused moderate low frequency hearing loss) and has been doing fantastic in speech. He is still miles behind his peers, but relatively speaking, he's doing awesome.
DS in short, is very sensitive and intense. I've felt like he is not typical for about 2 years now. I've brought up my concerns during his evaluations, dr appointments, and with friends and family. I've been brushed off with comments such as "when his speech improves", "he's just a boy", "your (insert relatives name here) did that and they turned out fine", "wait till he starts pre-school", "it's because you co-slept/waited to sleep train/(insert whatever parenting mistake here)"
I'm battling myself with mother's instinct and thinking he needs more help then he is receiving and that his behaviors individually may be ok, but together it's adding up. I want to be his advocate, but I feel like with all these people giving me reasons that he's "normal", then I must be crazy. Then I feel guilty for thinking that there is something "wrong" with my child.
We got the referral to a developmental pedi today, and they told us it takes about 6 months to get in. I'm scared that they won't see what I see, and then he won't qualify for the help I feel he needs. I also dont want to stick him with a label if its not correct. I feel like I can't tell where the line is. Is he typical and just quirky? Or am I doing a disservice to him and not fighting hard enough?
Did/Do you ever feel that way?
***DS 10/15/08 *** DD 08/03/10****
This discussion has been closed.
Re: I'm new to this and completely confused
I could have written this myself 18 months ago. So yes, I absolutely have felt this way.
My advice - keep moving foward. Take the EI services and get on that wait list for the developmental pedi. So far you are doing all the right things.
Its possible that he has an isolated delay and will catch up, but its also possible that as he gets older the gap will widen in other areas as well. Its good to be proactive - if in 6 months you feel like he doesn't need that visit to the dev pedi you can cancel it.
Um, yes. Completely. From about age 2.5 on, I felt like I was constantly see-sawing between "something is up, this isn't typical" and "maybe everybody else is right and I'm just paranoid." Then DD1 would make some progress and I'd feel okay for awhile again, until the differences became more obvious again.
Finally, one of her toddler class teachers asked if we'd ever had her evaluated and said she "didn't seem to process things like the other kids," and that gave me the push I needed to override DH and call our pedi to get rolling on a speech eval. I decided that even if they told me I was crazy, I'd rather hear that and know it for sure rather than possibly miss my child getting what she needed. The speech eval led to a developmental eval and an autism dx at age three.
My pedi is lovely, but brushed off my speech concerns at two since DD1 was on the slow side of normal for vocabulary. TBH, at that point things were very subtle -- like repetitive play that I mentioned but was told, "all toddlers are a bit OCD." She passed MCHAT several times with hardly a red flag (although I'd probably fill it out differently now that I've seen typical development through my DD2.) We rarely saw our pedi between two and three, but by our three-YO well-child check she guessed (correctly) that we'd get a dx that DD1 was on the spectrum.
People are trying to be nice and reassuring, but really, your gut instinct needs to be trusted. It's crazy-inducing when you see something that no one else seems to see, because either they don't spend enough time with your child, or don't spend much time around a wide variety of "typical" kids to know the depths of the differences. Some things, DH didn't truly realize until he started coaching DD1 on a soccer team with typical girls about six months after the dx.
They don't *want* anything to be wrong with your child, so they tell you nothing is, and that it's all in your head. And it may not be. Particularly when your child is already receiving services.
I was very, very anxious to get a dx, or get things ruled out -- whichever it ended up being, I just wanted to be out of limbo ASAP. We went to a child psych and were able to get an appointment within six weeks for testing, while simultaneously going through service evals through the school district. The wait list for our local children's hospital was four months, which is actually pretty good but seemed hellish at the time, since we weren't receiving any services or therapies at all. I got less panicky after school district services were started.
I wanted to have a medical dx in case we had to fight for services -- but although it was helpful to have official word on what we were dealing with so that we were all on the same page, the services from the school district likely would not have changed much. They've been, by and large, very pleasant to work with. I know that's not the case for everyone.
The dx was very helpful, however, in terms of helping us know what to research and how to decide on what private therapies (which we pay for OOP). So we weren't having to go, "should we approach this as if the primary issue is SPD, a speech delay, ASD, non-verbal learning disorder, or what?" We knew, and could work from there.
GL. It's not an easy process, and there can be a lot of denial from other people who love both you and your DC. My DH got on board fairly quickly, thank goodness, although he was very skeptical at first. We didn't even tell our families we were going through the evaluation process until after we had a dx, because I really didn't feel like having everyone tell me, "I'm sure she's fine, you worry too much" and second-guess us -- mostly me, because I was the one driving the whole thing at first. :P I was doing enough of that myself, but I'm glad that I stuck with it and we have been tackling DD1's issues head-on.
DD1, 1/5/2008 ~~~ DD2, 3/17/2010
You've hit the nail on the head.
I see what's there with DS, but because things are subtle and he's my 1st child, it's very easy to make excuses. I think if someone just saw us walking down the street they would assume DS was just a horrid brat. TBH, I thought so too for awhile. Now that DD is around (and even though I try not to compare them) the areas that he's delayed in are more prevalent to me.
Since he already recieves ST through the school system, is it worth having him re-evaluated through them while waiting for the developmental pedi?
Labels are a good thing. They make help possible and for that alone they're awesome. An appropriate label can be a shorthand to help start the process of understanding the whys. There is no permanent record where the label will follow him forever should he outgrow the need for services. And frankly, the reality is that if you have a kid who behaves in unexpected ways and you offer no label, one will be provided for him- rude, brat, dumb and poorly parented are the usual suspects.
Thank you. I needed to hear that.
Just chiming in on one of auntie's comments. My DH was adamantly against a label/dx at first -- he said they'd never get him to believe anything was wrong with DD1, that he didn't want her labeled, he didn't want people to treat her differently, etc.
His perspective on that has totally changed. Now he sees it as, having a label gets her the services she needs and helps us understand how to be better parents for her. And that we'd rather have her "treated differently," aka given the extra support she needs and understanding/work on her behaviors instead of punishment, because that's what she needs.
DD1, 1/5/2008 ~~~ DD2, 3/17/2010
Do trust your gut.
DS was in his first year of a special needs preschool for speech. And the last 3 months I was trying to get him OT evaluated. The teachers said they would keep a eye on it and DS was there for 2 1/2 hours for 4 days a week.
It took DS to be suspended from daycare for me to take him to the pediatrician to get referrals for OT and Behavioral. He was evaluated on Friday and he will need OT services once a week. Behavioral evaluation for autism/aspergers/etc. will be August 15.
Thank you all.
I put a call into ChildFind about having him reevaluated.
I've been googling and reading all day about things it could be and services available. DH feels that I'm moving forward as if I already have a diagnosis. I'm not. I know I'm not qualified to make that, but I am going to trust my gut from here on out. I want to my ducks in a row for when the time comes and know my options. If that means petitioning to get him into services if he isn't meeting the qualifications, to knowing where to go for private services, or receiving a diagnosis. I feel like I've wasted enough time and I just want to be able to hit the ground running either way, KWIM?
Good for you! Like others have said, my gut has never been wrong. At 15 months old, I self referred my second son for an evaluation through our school district and I am so glad I did. Many people, even the intake coordinators, kept telling me to wait it out, but I knew what I was seeing. He just aged out of birth to 3 services, so he had to take the ADOS again and it was so painfully obvious that he is on the spectrum. I was so glad that I didn't listen to all the advice others were giving me because at three years old he already has 18 months of EI under his belt and is set up to attend mainstream preschool with sped support in the fall.