Reaching out...

Rdmaggie

I'm an old time knotty/nests/bump girl but I created a new profile for privacy reasons...

It has been ages since I have been on any boards but right now I'm looking for support and maybe a little guidance. My husband and I had a long, difficult, tearful weekend where we both shared our concerns about our 22 month old daughter. She is the only child for either of us, and so her milestones and behaviors have always seemed normal to us. However I have a friend who has a child that is 2 days older and was born at 29 weeks, and they seem worlds apart. At first I attributed his advances to the intense therapy he went through, but now it more so has me really questioning so e of the behaviors and quirks of my own dtr. I.e.

1. She is obsessed with rocks, strings, q-tips... She will hold them in her hands for hours (one time as long as 8, throughout a trip to the amusement park).

2. At about 15 months she became terrified of other children, and even of family members. She will at best ignore them, at worst scream or grab my hand and say "go bye bye"

3. She has a moderate vocabulary, but for the most part I have to guess what she wants. She will lead me to the door if she wants to go bye bye, or go into the pantry if she wants a snack but she doesn't verbalize unless its to say "stop". But she can count to 20 and read/say abcs.

4. She doesn't follow simple directions. If you ask her to bring you something she knows what it means but she simply won't do it...she might "give five" but thats about the extent of it.

5. She shakes her hands a lot, waves them in the air and babbles seemingly talking to no one although she seems like shes really having a conversation.

6. She will randomly run up and hug me occasionally but she won't kiss anyone at all and for the most part has no interest being held unless its her choice and that is rare.

7. She just seems less aware than my friends child. He may or may not do what you ask but the majority of the time if I'm speaking with my dtr and its not some kind of rhyme or game we play she seemingly ignores me. 

i googled ( I know, I know...) some of her behaviors and was reffered to the m-chat? Which rated her as low risk for the autism spectrum... But be it that or not I'm still concerned her behavior is atypical and want to speak with her pediatrician. My husband and I have agreed not to talk with our families about our concerns at this point and even if there is a diagnosis made we may still not. I want support but I don't want her labeled and talked about by our family... At least not yet. The trouble I'm having is the judgments she gets for not being "lovey" She doesn't like physical attention and people always comment that she must hate them. Sorry this is so long... Just hoping someone can relate or has some advice.

lite-bright

She sounds a lot like my DD1, honestly. We got her autism dx at age three. She passed MCHAT twice with only a couple of minor flags at ages 18-24 months; we didn't start seeing really noticeable differences until more like 2.5. 

You need to get ahold of your pedi, express your concerns, and get a referral. Preferably, one to EI (Early Intervention, Child Find, whatever it's called in your area) for an evaluation for services; and one to a developmental pediatrician who can give her developmental testing and an official medical diagnosis if one is warranted. 

Don't be put off by well-meaning people who think you're a paranoid first-time mom. If your DD needs help, you want her to get that help in order to be her best self. Your gut is telling you something important, and it needs to be checked out. 

My DD1 used to hold one thing (usually toys) in each hand and pass them from side to side, back and forth, over and over again. She had an average vocabulary, her speech developed on time, and she used sign for awhile early on as well. At 21 months, instead of getting a language explosion of words, we got DD1 able to read all the letters of the alphabet (even upside down and backwards). My pedi noted at her two-year well-check that I had some concerns about language development, but she was still within the range of normal at that point. Her language development has never regressed, but slowed way down during 24-30ish months, when it should've been speeding up. 

And yes, the awareness. DD1 often seemed oblivious and absorbed in her own world, and didn't really care whether I was engaging her or not. Now that I have a daughter who is typical, I see how distinct the differences are. DD1 was very reserved as a child, and we thought she was just an observer personality-wise; that early tendency toward watching rather than attempting to participate can be a sign not of a choice, but of a social deficit where the child really just doesn't have a concept of how to join in. 

**Hugs** to you. There is a lot of support here from moms who've been in your boots during the diagnostic process. We're a friendly bunch, and we know how hard it is. Being in limbo -- knowing that something's wrong but not knowing exactly what -- was the hardest part for me. Getting the dx was actually kind of a relief, even though at the same time it's the last thing you want to hear. 

Keep in mind, as you're poking around on the netz, that a lot of the descriptions and lists you run into online are (IMO) biased toward boys (who have way higher autism diagnosis numbers than girls) or toward more severe/obvious behaviors that don't turn up in every kid. Girls often present quite differently and the difference is chalked up to shyness, anxiety, perfectionism, etc. My DD1 is downright cuddly, warms up to strangers pretty quickly, doesn't toe-walk or flap or spin things -- but she has real trouble holding the thread of a conversation, can be bewilderingly unfocused, and need prompting through things she's done a million times before.  

DH and I didn't tell our family during the dx process either. We figured if we were wrong, they didn't need to know. I think it also helped that when we did finally share, it was with a professional's authority behind it -- we didn't have to deal with family second-guessing us through the process. The conclusion that we came to, re: labels, was that it didn't matter whether or not we wanted her to be treated differently -- if she *needed* to be treated differently, given more patience and more social support and therapy and help -- then her needs were more important. 

GL, the place where you are is a very tough one to be.  

Rdmaggie

Thank you auntie for your thorough response. I shared this with my husband, which did break my heart since he was so relieved after the mchat bit. 

To lb - I appreciate your kind words. The last few days have been horrible, I was up every hour getting sick last night. Ikeep trying to tell myself she is my same little girl and that part hasn't changed, which is true but I'm just so afraid. I can't help but see all the differences between her and other children now, things I chalked up to her being an only child. Her shyness or fear of others, her preference to pick up rocks over playing on the equipment at the park. I feel so defensive and angry even without yet having a diagnosis. I think of how my friend tries to hug her or give her simple directions to bring her something and then the comments she would make and now realizing this could be something much deeper.... All I want is a bit of hope.

lb after you ot our dx what kind of therapys did you partake in? Do you think they were beneficial?  

lite-bright

It's hard. It's really hard, no way around it. You figure out a way through it; you deal because you have to. There are no heroics in it, just figuring out how to be the parent that your child needs -- not necessarily the one you thought you'd get to be.

I did a lot of sobbing in the shower. For the first few months after the dx, I was a crying mess about every other day, then maybe once a week, then maybe every other week, and eventually less than that. Why my child? Why us? Will she ever go to college, be independent, get married? Will she be easily taken advantage of, bullied, or put in danger because she can't read people? It hurts your heart so much to think about those things. But you adjust, and you start putting your energy into things that are helpful and constructive instead of worrying about what her life is going to look like in 20 years. My DD1 will have to work so much harder than typical kids, but I feel pretty confident that she'll get there. It just may look different and take longer for her to live her own life. I could be wrong -- the stats are grim -- but I try to balance realism with optimism. 

We did about a year of RDI (Relationship Development Intervention), and have since moved more toward using Floortime/DIR as our main therapy. After doing a lot of research and interviews, we didn't feel ABA was the best fit, either for her therapy needs and for our budget (it's very expensive OOP and we have no insurance coverage for it). DD1 went to preschool at three and this is her second year. She is doing wonderfully, is in a mainstream preschool classroom with some speech, occupational therapy and social supports, and is a happy and thriving little girl. We had PT conferences yesterday and her teacher said she's a joy to have in the classroom and that she has tons of kids who want to play with her (which, I actually wish she had to work a little harder to reach out!). 

We've cobbled therapies and activities together as we can. The first summer after dx, she was in a therapy playgroup for high-functioning kiddos that I found through a local non-profit. Wonderful thing, and we met an SLP (speech language pathologist) with whom we're still working. She plays soccer (DH coaches). She and DH do every-other-week Floortime sessions with a child psych. And she's done four days a week of preschool since three -- not what I envisioned our preschool experience to look like, but it has been a cornerstone of her development. You learn to work therapy-moments into everyday life. One of the most difficult parts is to stop compensating for your child's weaknesses and prod them to do more for themselves.

I absolutely feel therapy and preschool have helped. The other thing to remember is, autism is a developmental delay. Development doesn't just stop or freeze at a certain age. Kids continue to develop and make progress even if they don't receive therapy -- the thing you want therapy to do is to make that progress as broad and reliable and consistent as possible, to address behavior and skills to help them keep pace with peers as much as possible, and to push them in ways that they would not push themselves and that we as parents wouldn't know to push them without the help of professionals.You never think when you get pregnant/give birth that you'll have to teach your child how to play, KWIM? 

DD1 is 4.5 now, and it's a world of difference away from the child who wouldn't answer a yes or no question at 2.5, just repeat "yes or no, yes or no" back at me. I'm constantly worried that things are going to get harder, both socially and academically -- but you can only worry so much, and I really try to appreciate who she is and what she's accomplished, because she's a sweet and wonderful kid. 

I know you don't have a dx yet, but you might want to consider reading Making Sense of Autism Spectrum Disorders by Dr. James Coplan. Auntie has good things to say about him as well. It's a very helpful, practical, and optimistic-but-realistic book.

I hope that helps!

Rdmaggie

Again, thank you ladies. And auntie I thought after I posted that, that I meant to include your experience as well.

we have an appointment tomorrow with her pediatrician. I am going to ask for a referral regardless, I'm afraid to hear any response.... One for he obvious reason and the other because I wouldn't believe a "this is normal" anyway. 

MirandaHobbes

I just wanted to add that you are doing really well by talking about this with your DH and going to your pedi!! I was in such denial about my DS. DH and I never thought his development was abnormal. When people started approaching us I was gobsmacked, offended, and insulted. We happened to have an in home daycare provider whose parents were special ed teachers- her parents happened to drop in on occasion, and after spending time with DS, recommended we get him evaluated. I can't imagine where we'd be now if we hadn't done this. He may not have been evaluated until kindy. So keep up the good work!

A lot of your daughter's behaviors do sound a lot like my son's at that age. He was diagnosed at 19 months and started EI at 21 months. Leading me to things he wanted, not caring about other kids (and being afraid of them), echolia, etc. Our pedi did not pick up on these at 18 months but EI did. FWIW- today he is charming and funny, smart and awesome. He'll be in mainstream kindy with some pullout services to help him with social interactions. His biggest challenge right is relating to other kids. He still doesn't like playing with toys. His maturity is about a year behind. He does like playing with other kids sometimes (boy stuff like riding bikes or chasing), but he'll always go for a kid a year younger than him. He is only socially forward with adults though.

Good luck, I hope you get answers soon!

Rdmaggie

MirandaHobbes:

I just wanted to add that you are doing really well by talking about this with your DH and going to your pedi!! I was in such denial about my DS. DH and I never thought his development was abnormal. When people started approaching us I was gobsmacked, offended, and insulted. We happened to have an in home daycare provider whose parents were special ed teachers- her parents happened to drop in on occasion, and after spending time with DS, recommended we get him evaluated. I can't imagine where we'd be now if we hadn't done this. He may not have been evaluated until kindy. So keep up the good work!

A lot of your daughter's behaviors do sound a lot like my son's at that age. He was diagnosed at 19 months and started EI at 21 months. Leading me to things he wanted, not caring about other kids (and being afraid of them), echolia, etc. Our pedi did not pick up on these at 18 months but EI did. FWIW- today he is charming and funny, smart and awesome. He'll be in mainstream kindy with some pullout services to help him with social interactions. His biggest challenge right is relating to other kids. He still doesn't like playing with toys. His maturity is about a year behind. He does like playing with other kids sometimes (boy stuff like riding bikes or chasing), but he'll always go for a kid a year younger than him. He is only socially forward with adults though.

Good luck, I hope you get answers soon!

thank you so much... This gives me hope.