Starting EI. Family does NOT understand.
TwinMama83
member
(I'm sorry in advance if my vocabulary is not the PC norm. This is all very new to me, and I promise I do NOT mean to offend anyone. Please feel free to correct me because I want to use the correct phrases in the future.)
I have B/G twins and so I have built in developmental comparisons. I have always tried my absolute best NOT to compare them because I understand no 2 children are exactly alike, but it's hard sometimes when one does something new to not look at the other and say, "Well? Why aren't YOU doing it too?!" From the beginning my DD has always done things first. Rolled over, sat up, pulled up, first word, everything. My DS was usually a little on the pokey side, but nothing that caused concern until he was about 9 months and still not sitting up on his own. He finally got there but then DD started talking and he was still just grunting and moaning. Then I noticed that he's ALWAYS unhappy and sometimes completely inconsolable (over seemingly nothing), whereas she's pretty happy go lucky. It's to the point now that I'm starting to notice that his little "quirks" aren't so much quirks as maybe developmental delays and little red flags for some type of dx (I'm not sure what). At his 12m check up the pedi was concerned that he still didn't have a single word. At his last 15m check up he says "mama" but I don't feel like he associates it with me. He doesn't follow instructions. He doesn't turn when I call his name. He flaps his hands in a funny way. (Plus a few other things.) Now I find myself with several appointments for EI and a hearing test to rule that out. This plus their food allergies makes for one stressed out mama.
I have brought up my and the pedi's concerns with my Mom and she just says, "Oh your brother didn't talk until much later. I'm sure your DS is fine." Yes, but Mom, did you forget all the learning disabilities my brother has and the struggles he had just to pass middle and high school and graduate on time? Then he knew he'd have no chance at college so he joined the Marine Corp and he's currently in Afghanistan. I don't want that for my DS. (No offense to military families. My husband is in the Navy and so was my father. I only mean my brother felt he had no choice in his future, and I want my son to have choices in his life.) I have brought it up to FIL and he says there is absolutely no way DS is Autistic or has any other DX. I try to talk to my DH about my concerns and he just brushes it off like our DS is perfectly fine, I'm making a mountain out of a mole hill. I just *know* he's not "normal". (I don't know what word to use besides "normal". I'm sorry.) And now I'm even more convinced as I read your posts and comments about the "quirks" your children have that are aspects of their different Dx's - many of them mirroring what I see in my DS.
I don't know if I have a real point here. I just want to vent some of my worry, stress and frustration at my situation. I feel completely alone. No one sees any of these issues as something important but me. I feel like everyone thinks I'm a complete nutcase and I'm worrying myself and everyone else over nothing. I know in my heart of hearts that there is *something* there. Why am I the only one that sees it? Maybe I am nuts... ??
Re: Starting EI. Family does NOT understand.
I completely understand your frustration!
Sounds a lot like my family and DH's family. When our DS was about 18 months old we told them he was starting EI because he wasn't talking. We got a similar dismissive "he is fine" "he will talk when he is ready" comments. Because of that now we really don't bring anything up with them regarding EI and and doctor appointments unless specifically asked.
I definitely don't regret starting EI with him when I did however, and neither will you. DS has made excellent gains in the last 9 months but now at 27 months he is still not talking, so we still have a long way to go.
Just know that this is very common - and that most of us who have kids that don't have a specific diagnosis or those who have children with ASD have heard from our families and/or friends that our children will catch up, that all kids develop at different rates, etc. etc. But mothers have good instincts so you are doing the right thing for your son. Feel good that getting your son started in EI is most definitely going to help him and find some people who are going to be supportive of you and your decisions (and just don't talk about it with those who think you are overreacting). Good luck - i know it's hard!!
I think a lot of us can relate to what you're feeling.
For the longest time, I second-guessed my gut and told myself I was being paranoid, that all kids develop in their own time, etc. I'd go over milestone lists to reassure myself she was fine, because she was meeting them and exceeding them in some areas -- except that something wasn't quite right. Whenever I brought it up to DH, he'd tell me some variation of what I was telling myself, and point out that x y or z cousin did the same thing sometimes.
It would've done no good to bring this stuff up to grandparents, b/c they all live halfway across the country. They would've never told me that maybe I could be right that something was wrong -- they would've chalked it up to her being my first child, me being a perfectionist, having too high expectations, etc.
Finally, when one of her toddler class teachers told me that she "didn't process things like the other kids" and asked if we'd had her evaluated, it was vindication for me that I wasn't the only one seeing the differences. DH agreed with the evaluation process in words, but fought it mentally/emotionally -- he would say things like, "They won't convince me there's anything wrong with her." Eventually that shifted to, "They'll have a hard time convincing me that anything's wrong," and more and more toward acceptance as we filled out evaluation forms and went through the process.
He took her to the child psych and observed her testing, and I think seeing how much she struggled with certain parts of the test sealed the deal for him knowing that yes, she does have autism. He's been on board since, thank God.
So, DD1 was diagnosed with autism last March. She doesn't have a lot of odd behaviors that are obvious, her eye contact isn't that bad, she's very affectionate, she's verbal (though delayed) -- she doesn't meet most of the criteria that parents are commonly told to look for.
DD1, 1/5/2008 ~~~ DD2, 3/17/2010
I agree 110%! Its so hard, I've been there and we are still going through it. I just submitted a stack of paperwork to get DS evaluated through children's hospital for an in-depth assessment for ASD among other things. My family has been somewhat supportive but I can tell that my mom thinks I am over exaggerating and there's nothing really wrong with him.
We started with EI through our county and DS qualifies for speech therapy along with a special needs preschool teacher. He lost all of the words he had at 18months. Its been quite the journey but the one thing I have learned the most, is listen to your mommy gut! You are doing the right thing by persuing services now instead of waiting. From every person in EI that we've encountered they have all said the earlier the better when it comes to evaluations. Trust yourself and do what you know is best. There are always critics and people who think they know best, but they absolutely don't.
You are doing a great job! Keep going!
I am just lurking and neither of my kids have a special need but when DD was 3mo she was really tilting her head and her hip and everyone but my BFF thought I was crazy. The doctor sent up for PT for torticollis and after 3 months her neck was not stiff but she was still curving, sent to an orthopedic and they said her neck and hips were fine and not concerned about her back. Well she was curving like a "C" and that is not normal and not ok with me so I took her to NYC to a special hospital and she was diagnosed with Infantile Scoliosis.
My point is that you need to trust yourself, better to get help and there be no issue then to wait and regret it. Good luck.
I'm another voice piping in here to say trust your judgment and if your extended family doesn't get it, then it's their issue--not yours.
When Aaron was a baby, he had Torticollis and Brachycephaly. When I pushed for PT (at 2 months) and then a helmet (at 4 months), there were people who insisted that his head would "round" out on its own or that the PT wasn't necessary. It was and I'm glad I stuck to my guns.
He now receives therapies through EI (speech and developmental intervention) and he is improving. And based on concerns re: his development, I had him screened (for Autism and global delays) and while he does not fall on the Spectrum, he does have the expressive language delay, some sensory issues and some gross motor delays (which I am in the process of attending to).
I think getting services is a good thing--no matter the cause, it's the results you are after. Good luck with everything.
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