“Every child is different.”
“Believe me, you don’t WANT her to walk!”
“Well, if you wouldn’t carry her everywhere!”
“Oh, you first-time moms are so worried about milestones.”
“No baby is totally by the book.”
“Quit worrying! She’s fine!”
Except . . . she wasn’t fine. My daughter had such a severe developmental delay that she qualified for services from a state program.
But getting to that point? Not so easy. Getting our doctor, our family, our friends, ANYONE to acknowledge that she wasn’t normal? Darn near impossible.
If you’re new here (or have somehow managed to miss it, even though I say it All. The. Time.), you might not know that Annalyn was born seven weeks early. Long story short, I got very sick very fast, and at 33 weeks, she was delivered in an emergency c-section in the middle of the night.
I’m not even sure that’s relevant to my story, though. Because nobody can tell us why our seemingly healthy – and clearly bright (No, of course I’m not biased! Actually, I have test result after test result to prove that the problem was not her brain.) – daughter was significantly delayed in all of her gross motor skills.
Gross motor skills are the big ones – rolling, sitting, crawling, walking, running, jumping, kicking. You know, the ones that everyone asks about?
“So, is she rolling over yet?”
“I bet she’s crawling all over the place!”
“Uh-oh, she’s getting to the age when she’ll get into everything!”
Well, no, not really. She can’t get into everything if she refuses to move off her blanket or play gym!
And that’s just it: we didn’t know if she was refusing or unable to do the things we so desperately wanted her to do. She IS willful and independent and smart. So, I can totally see her little baby brain deciding, “Hey, I’ve gotten really good at this crawling thing now that I’ve been doing it for A YEAR. Why bother with the walking? It takes so long!”
Look. We might be lazy in this family, but we are NOT stupid.
Seriously, we’re not sure what the problem was. But we WERE sure that she had a problem. It was the doctor that wasn’t certain.
At nine months, she told us not to worry and that as long as she was standing and trying to take steps at one, she would be right on track. At one, however – when Annalyn was most definitely not standing or taking steps – the doctor told us not to worry and that we’d just give her a few more months. She said that if she wasn’t walking at her 18-month appointment, then we’d worry.
Then came our 18-month appointment. Still not walking. And the doctor was still not worried. Also – still not calling a specialist and still making us feel like overreacting, first-time parents.
Finally, after another month went by and our 19-month-old daughter was nowhere near walking, our doctor gave us a referral to a specialist and sent us to the children’s hospital for physical therapy.
The specialist couldn’t see Annalyn for SIX MONTHS. And the therapist at the children’s hospital apparently believed in tough love and leg braces. Both made Annalyn – and me – cry.
Meanwhile, family members were still “teasing” me, saying that she’d walk if only I’d put her down. (I absolutely did NOT carry her too much. I was a full-time working mom, for crying out loud. The kid was NOT getting coddled!) And at the same time, they were warning me to be careful what I wished for, because walking babies are such a handful.
Yeah, well, carrying your 90th percentile for height and weight 18-month-old into the library, store or doctor’s office is a pretty big handful, too.
Thankfully, as I complained about our problem to a friend at church (Because a child who doesn’t walk at an appropriate age is a problem for the nursery, by the way. Do you keep her in the crawler room with babies? Or put her in the toddler room and let her get run over? Oh, the dilemma.), she told me about First Steps.
First Steps is a Missouri state program that offers services to children younger than three. It costs – literally – 95% LESS than the children’s hospital and the therapist comes to your home for the therapy sessions.
It was a miracle.
Granted, the application and evaluation process was NOT a miracle. It was more like a pain in the neck. But it was well worth it (as were the other, seemingly continual evaluations we went through over the course of a year), because the therapists that worked with Annalyn made amazing progress.
She actually started walking – basically on her own – right around the time we were getting her enrolled in physical therapy. But even then, she was so far behind kids her age (and, honestly, kids up to a year younger than her) that she needed extra help.
For just over a year, she’s had weekly physical therapy sessions and the change is amazing. She’s so much more confident now, and let me tell you, not having to carry her (aside from the ever so lovely public meltdowns) is a miracle of its own.
Annalyn still falls a lot. And she runs about a quarter of the speed of kids months younger than her. In general, she’s slow and awkward – but she’s moving! She’s jumping and running and walking like a pro.
And I just can’t imagine she’d be the same girl if we hadn’t FINALLY gotten some help for her.
Throughout the whole process – including looking back and realizing just how oblivious our doctor was about her development from Day One – I couldn’t help but think, “If I’m THIS frustrated with our situation, I can only imagine the overwhelming feelings a family with a more serious issue has.”
- I felt scared. Scared that something permanent was wrong with her. Scared that she’d never be normal.
- I felt guilty. Guilty that we swaddled her for so long. Guilty that we didn’t let her climb on things. Guilty that I delivered her so early.
- I felt stupid. Stupid for being worried. Stupid for overreacting. Stupid for making a big deal.
- I felt desperate. Desperate for someone to listen. Desperate to FIX the problem.
- I felt lost. Confused. Annoyed. Protective. Embarrassed.
And if I felt those things, simply because my daughter walked late, I can only imagine what parents of children with other special needs go through.
That’s why, over the next few weeks, I’m going to be publishing a few guest posts from mothers of kiddos with special needs.
Maybe you’re going through something similar and need to know that you’re not alone. Maybe you know someone with this type of situation and you don’t know what to say, how to help. Maybe you don’t have kids and don’t know any kids, but need a reminder to be thankful for legs and brains and eyes that work.
I hope that, whatever your reason for reading my Special Needs Kids series, you’ll welcome my guest posters with open arms and warm comments.
Does anyone in your life have special needs? How has that affected your life?
Mary- I can’t tell you how similar your post is to my life with my daughter. We’ll have to skype about it- pretty funny how similar our stories are.
I have a beautiful son who is such a blessing, who has PDD-NOS (autism), global delays including gross motor, speech, an oral delay and is orally defensive, sensory processing disorder and an eating disorder, on top of allergies. We have had to fight all his life to get recognition and the help he needed. That is a big reason we have come to homeschool him, the school district just wouldn’t provide the help he needed and he lost some of the skills he had during the semester we tried school.
I too had lots of nay-sayers, oh boys develop late anyway, you hold him to much, you dont discipline him enough to make him eat normal food. For a while I doubted myself, then I realized NO! I am not wrong here. I am with my kid 24/7, I know him better than anyone else and this is not normal, now either you help me help my child, or I find someone who will. I still have days where my confidence falters, I wonder am I failing him, hes so behind that 2yr olds are doing more than him, then he will do something so clever and adorable, that I am reminded I am doing what is best for him. I need to stop comparing myself and my child to everyone else, God gave us these blessings of children, not to be clones of each other, but to be individuals, with differences big and small.
Thank you so much for sharing your story with us!
I have to tell you that your story touched me. We went through a similar situation when my (now 6 yr old) daughter was 4 months old… Let me back up. Brooklyn was a normal baby. Born at 38.5 weeks via c-section, weighing in at 9lbs. 15oz. Healthy, happy and cuddly. When she got her 4 month immunizations that’s when it all started. She became lethargic. She would stare blankly at you. She HATED tummy time… More so than my first 2 EVER did. Her poor lil head would drop and she would start screaming, in-hale sharply and do it all over again. It SCARED ME. We took her to our pediatrician. Who told us repeatedly that it was normal infant behavior. No. I didn’t believe that for one second. I wasn’t a first time Mom and even if I had been, I’d been around enough babies in my life time to KNOW that it was NOT normal. We took her to another doctor who blew us off. Took her to a 2nd pediatrician who discovered she had an ear infection and then proceeded to berate me on how her “dislike of tummy time” had nothing to do with her ear infection. She saw an ER doctor. She hated loud noises. She saw a NP. She wasn’t progressing.
After over 2 months of taking her back and forth between our ped and other FP doctors, our ped VERY VERY reluctantly (and very sarcastically) agreed to order an EEG for Brooklyn. She went in for it on a Friday, Sept. 17, 2004. Three days before she turned 7 months old. On Monday, Sept 20. the ped called me at 9am and told me that we HAD to get to SMDC IMMEDIATELY because “it’s a matter of life or death”, yet she refused to tell me what this matter was….
We DID go that night to SMDC. We had a FANTASTIC pediatric neurologist who told us that Brooklyn has (in remission now) a seizure disorder called Infantile Spasms. Her “dislike of tummy time” … was in reality head drop seizures. Thankfully Brooklyn was treated and responded quickly to a steroid treatment (ATCH). Her gross motor skills plateaued and I was told that she would never be “normal”, she would never walk and to get used to her being “this way”. Brooklyn walked by the time she was 15 months old. She is now a happy and healthy 6 (almost 7) year old. She is above most of the students in her 1st grade class and we stopped seeing the ped who blew us off for 2 months after she first told us she’d never heard of IS, then she’d diagnosed ONE child with it in her “17 yrs of practice” (she’d been practicing in the area for 25 yrs) and then the last time we saw her – she claimed to have diagnosed 5 children in this area with IS AND told me that I was a horrible mother and that Brooklyn would die because we had stopped all immunizations (at first due to the fact she was immuno-compromised and couldn’t have any), but then after much research and praying on our part, we stopped them all together.
Sorry for the novel. But as I said, this really touched me, touched home with me. Annalyn is precious and beautiful and she’s very lucky to have a Momma who cares so much for her!
Jaclyn…wow. I cannot believe your pediatrician! How terrible. But I’m so glad to hear that your daughter’s doing so well (and that you left that awful doctor)!
We adopted our beautiful daughter at age 17 months and she was barely walking and talking. We got her signed up for Help Me Grow (birth to 3 in Ohio) right away but we were also on a waiting list. When we finally got started it was wonderful- I actually cried when she turned 3 because it was so great. Now she gets something called BCMH in Ohio- its kind of like sChip for kids with disabilities. I’m surprised at how many people donlt know about BCMH in Ohio. It pays for almost all her medical expenses.
I’ve been a little nervous now that Annalyn doesn’t qualify for therapy anymore, so I understand what you’re saying!
I too have an autistic son, and I got the whole “boys develop late” thing too. Not that he ever had a problem with walking… he did THAT at SEVEN MONTHS. Before he crawled. Gross motor was off the charts… climbing up and over 8 foot fences at 14 months of age… climbing (and jumping out of) trees… running leaps off our ROOF… apparently, as with a persentage of autistic people, he sought out the vestibular rush. so, we thought that was normal. He was our first child AND a boy, so we didn’t think anything of that.
But he didn’t talk until he was 4, and now, at 10, he still doesn’t have the clear speech of other children his age. We didn’t get any real help for him, despite our efforts, until he was in school and the teachers had to SIT ON HIM to stop him trashing the joint through a tantrum. (Oh my… the tantrums. but that’s another story for another day *smile*) The school was so much more helpful and we were able to get Troy the help he needed. He’s not the same kid :)
My twins have expressive receptive delays, and at 7 have only just learned to read. However, becasue they don’t have autism, they don’t qualify for any special help. We are so blessed though, that their school has put them in the program regardless, and at their own cost, to help them reach their potential.
My small 3 show no signs (so far) of any intelectual/learning delays. What I personally find interesting, is that with my first two pregnancies (Troy, then Drew & Bethany) I had threatened miscarriages. Two for each pregnancy, early on., and the other three, I didn’t. I wonder sometimes if that had something to do with it…
I look forward to this series. It’s nice to hear from others that struggle just as you do. it makes it not quite so lonesome and guilt ridden.
Wow! You have had the opposite experience we’ve had in so many ways – I can’t imagine a 7-month-old running around! Thank you for sharing your story with us, Jen.
My mom has taught Special Education my whole life. I grew up with friends from her class that had special needs and have a life long friend with cerebal paulsey. Have you heard of babies can’t wait? Mom works for them too and it is great for kids who need a little help walking, talking, etc. Of course your biased but your also right, your little girl is really CUTE!
Thanks, Katie. :)
All the emotions you feel are quite normal and the best thing you can do is to overcome them, you did nothing wrong, sometimes it’s just not in your hands. My grandson who is 15 now was born after a very long labor (the doctor should never have let that happen), he was also about 6 weeks premature and came out blue and not breathing. They got him going then his lungs collapsed, they inserted tubes and got him going again. During the next year he was back and forth in the hospital because he would just stop breathing. To make a long story short, my stepdaughter went to everyone she could because he wasn’t walking and then he would not talk. At three he was still not saying anything anybody could understand. She went to all the agencies, they sent out therapists, nothing worked. Finally he started to talk but he was very hard to understand. Many years of speech and now he can talk but he cannot read. Reading is one thing he just can’t conquer. No amount of extra help has helped him, he is in a self contained special class because of it. He is otherwise very much a normal teenager with braces and stubborness and an attitude too! I often wonder what he will be able to do for a living when he needs to go out in the world and make a living. Being unable to read is quite a handicap. I’ve learned that sometimes you just have to let things run their course and pray for the best! Sorry this was so long.
Gail, I’m so sorry to hear about the struggles your grandson has had! Thank you for sharing your story with us.
Hi Mary. We went through First Steps with my son 7 years ago for a speech delay. They were miracle workers! He is almost 10 years old now and you would never know that he had a speech problem at 3 years old. I had people telling me things like, “Oh, he’ll be talking soon”, “Just wait you’ll be sorry you ever wanted him to talk”, etc…Well, he wasn’t going to do it on his own we later learned. I’m so grateful for First Steps. We probably wouldn’t have gotten the help we needed for him as soon as we did if it weren’t for them.
Thanks for sharing your story.
Agreed. I would call First Steps providers miracle workers, too! So glad your son had such a great experience as well!
So glad you pursued other doc’s opinions. :) My daughter is 10 and has a brittle bone disease. We knew before she was born that she had it due to DNA mapping and an amnio, however, we weren’t sure of what her condition would be until she was born. She was also a preemie born at 33 weeks. Turns out she was really long though for being that early — she was 17″ — unheard of for a 33 weeker! God knows what He is doing because I maintain she would have broken her legs many more times than she already had in utero if she had been a fullterm baby.
Catie was involved in TEIS (Tennessee Early Intervention Services) until she was 3 and then aged out. She did qualify for the special education preschool but it wasn’t a great fit for her at the time because of other circumstances within the school. We kept her at the same preschool she had attended for 6 months already through TEIS and she thrives in school today. I did finally get her qualified for an IEP which took about a year and a half but now we have it and all seems to be on track.
Even when you have a child with special needs that you KNOW she will have, people say and do stupid things. I have actually had a relative say to me “oh, don’t worry, she’ll grow out of it”. It’s a genetic disorder, not something that changes with time! I’ve learned that these people are the ones who miss out on the great things in life and I repeat that to myself many times each week. :)
Good to read your all’s stories!
You’re right – people say stupid things in all difficult situations, it seems. I guess I should remember how often *I* have made careless comments! Yikes!
What a great idea for a series. It’s always good to shed light on other other peoples lives and struggles.
Mary, thank you for sharing from the heart about your precious little girl. I know that feeling….If I feel this way about my son having ADD, how must parents of children with *more special* special needs feel? My son is 11yo and has a lot of trouble focusing. He has to be talked though things like cleaning his room and doing his math homework. Looking forward to your series!
Caroline…are you formerly known as Mary B? Or am I going crazy?
My nephew was diagnosed with low muscle tone as an infant. He had to do a lot of extra therapy. I guess technically he is still a little behind his peers, but it is in much more subtle ways now. I know it was hard for my BIL and SIL because we had a baby six months after them and of course comparisons became inevitable. I know from my own experience that TX has a great in-home intervention services. We had an evaluation with the program with my second daughter, born about 7 weeks early as well, just to be sure she was on track (thankfully she was). My first son (third child) didn’t walk until 20 months and we were scheduled for an ECI evaluation when he did start walking. Apparently he was just taking his time, as he has not had any other issues. I’m so glad you were persistent and that you are sharing your story, to help parents (especially new ones) know that it is better to be pushy and wrong than silent and right. Thanks!
Thank you for sharing your story, Nicole. Annalyn has low muscle tone, too.
I know exactly how you feel about people making comments about how your are the reason that your child isnt doing what they should be. My daughter had Infantile Spasms at 5 1/2 months and at almost 20 months is still not walking. We have had to fight for every milestone. And honestly, I get so so sick of people saying she should be doing more, when she is doing the best she can. and on the flip side, I am tired of people making excuses for her as well. But that is another story.
Thank you for sharing your story and being so transparent!
It’s so hard, isn’t it? It can seem like nobody understands just what we – and our kids – need to feel supported!
Thank you for sharing your story, Mary! I hope it will be helpful to other parents in similar situations. It’s so important for children to have advocates. I’m sorry that people didn’t listen to your concerns much earlier but thankful that a friend was able to point you in the right direction and that Annalyn is growing in ability and confidence. Most states have programs like First Steps, just called different things. I can tell this is going to be a great series. Maybe I’ll be able to use it with some of the parents of my patients!
I hope you can use this series, Leigh! If you have anything specific you’d like to see addressed, shoot me an email!
Ah, as a former pediatric physical therapist I read this internally shouting yes, yes, yes!! And your readers and everyone should know that it is federally required that every state provides early intervention programs for birth to 3 like the ones you used. They are absolutely free if your child qualifies. Even the best pediatricians often times don’t refer enough so it is up to parents to be advocates for our kids. The earleer they get therapy the better the outcome so this is one time it pays to be a pain in the butt.
Thanks, Jill. I didn’t know if every state had a program like First Steps, so that’s great information!
Well, this series will probably be convicting for me for a number of reasons, and also make me feel pressured! ;) But I’m also looking forward to it. :)
It seems like society sure is good at making you feel guilty and abnormal! (you in general, not you specifically:) Or maybe we’re just good at that ourselves. ;) Anyway, somehow I can relate to both you and Annalyn in this story. :) And yet, I also feel convicted because I think maybe I don’t really understand all that my students’ parents might be feeling and going through. (So I guess I can relate a little to the advice-givers too then.) Not that I see kids that young, but still. Sorry, I’ll stop babbling now. Please don’t be too hard on me in any of your posts. ;)
There is something to be said for that gut feeling that we mom’s have when something doesn’t seem right. I’ve acted on that feeling several times, and was right all along. So glad you posted this! We are our children’s best advocates.
So true – and that’s something nobody told me before I became a mom!
Thanks for doing this series–I look forward to reading more!
Thank you for writing such a heartfelt and insightful post. I think your idea of a special needs series of posts is great, and I look forward to reading more.
Though it’s not a special needs concern, I can relate in this way: I feel all those things you felt about my 2-yr-old and the fact that she probably needs ear tubes. Everyone keeps telling me it’s not a big deal. That it’s done all the time. That I shouldn’t worry so much. But general anesthesia – not a big deal?! Um, yeah, it is. And I haven’t reacted well to anesthesia in my past experiences with it, so I’m afraid little Miss Boo won’t either.
So I hear you. I feel guilty, stupid, protective, etc. It’s definitely not helpful when people keep telling you something isn’t a big deal, when it IS a big deal – because it’s a big deal to you. And that’s all that matters.
Good point – if it’s a big deal to me, then it doesn’t matter how many times I hear “it’s not a big deal.” So true.
I am so glad First Steps worked so well for you. I don’t think we talked much after she started. I REALLY miss it now that we moved. Jonas still asks when “Miss Amy” is going to be coming. After reading this, I think I may call the early intervention in Kentucky to see if he qualifies. He is doing really well, but I get nervous now that he doesn’t have therapy. I still get comments about him, but I think people just don’t want to say “hey, whats wrong with your kid,” so they think it is better to just pretend everything is fine (and he is mostly fine-just probably the same stuff as Annalyn..low muscle tone, struggles to climb, stairs give him problems, and he falls easily). I used to have a lot of guilt-did I not let him have enough opportunities, is he my neglected middle child, etc, but first steps helped a lot with that too. Annalyn is a cutie!
Jessica, I am SO nervous now that Annalyn doesn’t qualify for therapy anymore! Once we got through the hassle of getting evaluated and getting started, it was SUCH a comfort knowing that she was not only being challenged and helped each week, but being watched to make sure she didn’t regress or quit progressing!
And seriously, I am so thankful for your encouragement. Thank you. :)
So good to read this story. Nathan was late on his gross motor stuff too (crawled at 13 months, walked at 18 – kind of) and you’re right, it’s a PAIN to carry him everywhere and be unsure about which church nursery room to put him in, etc.
Unlike you, though, I had a whole host of people telling me I SHOULD get help for him, and I just wanted to ignore it. He’s ok now, but he’s almost 3 1/2 and you can still tell he’s not as quick or agile or mobile as other kids his age. Those people who told me he’d be just like the other kids by the time he was 2? Yeah. Notsomuch. We’re now going for 5, and hoping we don’t have to delay his kindergarten entry because of it (although we will if we have to).
Now Anneliese is in the same boat (a little more delayed, actually). I’m trying not to care, but I care more than I want to admit. I feel like I need to point it out to other people before they point it out to me (Yes, I KNOW she is delayed!)… did you ever go through that?
I’m trying to put on a brave face to deal with the social workers (they both got a diagnosis of ftt — which means social services gets involved) and physical therapists and whatnot. But… ugggh. Yeah. You know how that feels. Anyway thanks for sharing. :)
I’m definitely guilty of pointing out my own faults before anyone else can. And, yeah, I did it with Annalyn’s walking, too. I wish I hadn’t. But I did. Your babies are wonderful JUST the way they are, but receiving services will only make their and your lives better. You’ll make it through and have so much progress to show on the other side!
Thank you for this series! Your bullet points are EXACTLY what I am feeling right now! I have a 4 year old daughter who was previously healthy but suffered a post-immunization brain infection, auto-immune reaction that further damaged her brain, and now seizure disorder. We are in the hospital (again) for this whole week doing video monitoring of her epilepsy. It is challenging because sometimes when I press the event button she *isn’t* having any “identifiable” changes in her brain wave patterns, and there is always the only partially-cloaked criticizing eye of the physician team – almost as though they are waiting for me or her to slip up and reveal that really, after all this fuss, she’s not having as much trouble as we know she is. Trusting your instincts in the face of physician distrust can be a very, very difficult thing to do. Demanding treatment when you are told nothing is wrong is even harder! In my daughter’s case, having the guts to do that saved her life – and has since saved her physical abilities many times as I’ve insisted on various therapies or interventions to help her regain skills.
Thank you for posting this!
I am so sorry to hear about your frustrating situation! I can’t imagine trying to convince a whole team of doctors of something so serious and scary. I pray the doctors listen to you and do everything they can to treat your daughter’s problems!!!!