Waiting For the Next Step

We know of a kid in a faraway town (no it isn’t your kid, I’m talking friend of a friend situation, someone who doesn’t know I blog) who has a certain developmental delay. Rather than simply focusing on securing help for their child, kid’s parents took him/her to doctors all over creation until they found one that would say s/he didn’t have THAT delay. Kid still needed services, but there was a whole different, special and less stigmatizing explanation for it. Yet the intervention was the same damn thing.

When this was all going down I was very judgey. Who the fuck cares what the label is? Help. Your. Child.

Yeah, feeling quite a bit less judgemental right now.

Last Friday C’s new teacher did a home visit with him in preparation for the new year. For privacy purposes I’ll call her Teach. Also, because that is what my sister and our friend Jenny called whoever was teacher when we played school in our unfinished basement c.1985. We were very cool. T started in Teach’s classroom when C was a week old. During her home visit two summers ago C wasn’t yet born. So Teach might not have a close relationship with C yet, but she is certainly familiar with him. And we trust her completely. She agrees that his lack of speech is an issue and suggested we not wait until the school year begins, rather she felt we should have him evaluated to see if he qualifies for early intervention services now.

I called the program that afternoon. A caseworker contacted me on Tuesday, and our first home visit was today. Every person I’ve talked to who is involved with the program has been compassionate and informative. The process is moving much faster than I thought it would. It is absolutely the most pleasant interaction I’ve ever had with a bureaucratic agency.

C will be officially evaluated at our home on September 3rd. Kind of a loaded day for me. It is the third anniversary of finding out I miscarried. On a happier note, it is the 13th anniversary of our marriage. By the end of the evaluation we will know if he qualifies for services and if he does we will have the first session scheduled before his case worker leaves the house.

The case worker asked tons of questions about his history. She told us our story sounded much like her own with her two sons. Firstborn early developer, second child often ill with ear infections and delayed with speech. Her son didn’t start talking until he was two and a half. After a pause I said, “And now is when you tell us that your youngest is just fine.” “He is starting college.” she replied, “On scholarship.”

Big exhale.

We have identified a problem. We’ve talked to people we trust. We are following their advice. We are aggressively going after this thing. We are going to help our little man.

I’ve been trying to write this all day. And I just can’t focus. Been doing a lot of crying. I understand he had tons of ear infections. I understand they made it sound like he was hearing underwater. I understand he had multiple illnesses and hospital visits on top of that. But I can’t help but feel like I failed him.

There was that moment in time when he was supposed to be learning to talk and it just slipped by us. I was too busy dealing with the kid that could talk to us, or trying to get C well, or worrying about my own stuff. He is my job and I failed him. I feel like I’ve gotten a shitty performance review at work. I think back to the first two years of T’s life, of the attention we showered on him, the books we read him, the talking we did to him. Of course he was an early talker. C gets his bedtime stories, but I don’t stop and read to him in the middle of the day nearly as much as I did with T. I try and have conversations with C, ask him questions, tell him about things. T doesn’t get it. He is right there with an answer, insinuating himself into every situation. He’s four, that’s what four year olds do, and he thinks he is being helpful. He knows that C can’t answer.

I don’t want C to need early intervention. I don’t need him to be the best or the fastest. But I want him to be on track. Mostly for him, but the shitty and selfish part of me needs him to be “normal” in every way. This isn’t about me, though. It is about doing what is right for him. And making this in any way about my job performance or my expectations from my kids is truly terrible. This must be about providing my son with the resources he needs to learn to talk. End of lesson.

Jesus fucking christ, this parenting gig is hard.

Dude grabbed a set of mystery keys we gave to the boys as a toy and bolted out of the house. He could not understand why he couldn’t unlock the car with them.

stealing dads hat at the zoo

He stole his Daddy’s hat at the zoo last week.

putting it back on

And kindly returned it. He is a wonderful human. And now I’m crying again. I just want to do right by him. I want him to be ok.

tbt first k z pic

And now to end on a happy note. A little #tbt for your viewing pleasure. The first picture ever taken of Z and me. Summer of 1998. Think my sister snapped the shot. We were dropping her off at the airport-it was either LaGuardia or Kennedy, can’t remember which. Back when you could go right to the gate.

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84 thoughts on “Waiting For the Next Step

  1. My C had early intervention services too, in NY, for speech. They were great. I worried it was my fault too. But the best part was that legit teachers came to our home and had one on one sessions w C. He loved them, looked forward to the sessions, and really blossomed.

  2. Stop blaming yourself. A lot of second borns don’t talk till later anyway–the first kid just jabbers for them. Remind me to tell you my old professor’s birth order theory…..

  3. Sadly, I was a late talker too. In my case I did not recieve early intervention until kindergarten. I was also second born and had chronic ear infections – this was many years before ear tubes or pre-school was readily available and accessible. I was actually under the impression that I was talking at the time- I was wrong. Apparently I kind of got around the hearing part by developing my own little incoherent language. Long story short I ended up in speech therapy and spent a lot of time talking into a tape recorder and having it played back to me. My hearing has recovered as well as my language skills – my ego remains destroyed (kidding, kidding). I was so glad to have early intervention with my daughter. I’m pretty sure its easier to fix this stuff early.

    • You know what? I seriously think you rock. So C will have something in common with a super awesome lady if he qualifies for service.

      And you are totally right, getting the early intervention does make it easier. His teacher told us to do it now because while it might resolve when he goes to school it also might not. She said if we wait 6 months the difference between where he is compared to the other kids will grow exponentially.

      I think it is amazing that you invented your own language.

  4. Oh, Karen… I am weeping along with you. Second Kid is a weird thing. You’re laid back, you’re less worried. And then BAM. Your kid has ringworm and they’ve had it for a month once you realize it. Oh no, that is my kid. The kid that I thought was just itchy from the sunscreen and dried out from the chlorine so I made sure to keep them extra moisturized, thereby making sure that good old ringworm fungus had a nice, moist environment. But then I figured it out and I took care of it. Because that’s what we do. First kid, second kid, forty-fifth kid, we do the best we can. Love you and your boys, all three. You’re doing the best you can. The End. That’s all they wnat from you. But god damn, it is hard.

    • Thank you, Kelly. Just thank you.
      Glad you got sweet Lucy sorted out.
      And I’ll try to remember that’s all they want from me. Except T. He wants more. He wants me to chase him around our backyard until I vomit.

      • You need to tell T to shove it. Say “Listen, kid, I am done screwing you up for right now. I need to focus on screwing up your brother, ok?” xo

  5. Oh honey, early intervention doesn’t mean you’ve failed as a parent. Remember, T & C are 2 different children. Grace had EI services until she was 3 & it was a great experience; it gave her a leg up when she entered preschool. But I do empathize with your feelings of failing as a mom. Being a working mom myself I feel like I fail Grace all the time. Working moms or SAHM’s, we all have the same gulit. Chin up!

    • Thank you, Noelle. And god’s honest truth, from the moment I met you I have admired the shit out of you. It is clear how much you love that girl, how you would do anything for her. I know her name is Grace, and it is perfect for her. But it’s a pretty good definition of how you have handled motherhood. She is lucky to have you.

  6. My first born needed Early Intervention, but slipped between the space of good intentions and ignorance; his doctors’ and my own. I have often worried over countless yesterdays, but then I move forward conscious of today and all the potential in tomorrow.

    Your vulnerability and passion are beautiful. One day your children will treasure these words.

  7. I thought I was the only Mom out there that blamed every little thing that happened with my son on myself. My son Ayden needed early intervention not only for speech but for anger as well. One of his teachers suggested ADD but that wasn’t it. They haven’t really diagnosed him with anything quite yet. We’ve been seeing specialists. We’ve actually seen a few since he was 3. He’s now 8 and he has completely changed with no meds and no actual diagnosis. He just sort of grew out of it. He did have help in speech though. I pray for you. Parenting is never easy and it never ends.

  8. I know exactly how you feel. My son went through the same thing and still is. He had tons of ear infections has a infant and multiple stays in the hospital. All of that caused speech delay and other issues. He is now three and getting the help he needs and doing very well. I hope you all the best with C and hope that he comes out on top.

  9. Wow, you’re doing everything so well. Early Intervention is so wonderful. I am a special ed teacher and didn’t get my daughter into speech therapy until she was 4 because …….? I thought she would catch up. She was a twin and her sister talked for her. Her older brother has multiple disabilities and I just didn’t pay attention? Anyway, she’s 12 and still in speech therapy but only because it helps her confidence. The only thing she really can’t say is ruler….and she will eventually get that. Please be kind to yourself, we moms forget to do that.

  10. I think it’s great you are getting early intervention services. That’s the way to do it. I bet you see him blossom before you eyes. I have two kids, both went through speech, just developmental stuff. I didn’t have the quite the same concerns that you have, but can say it made a world of difference. Just take it one step at a time. Congrats on being Freshly Pressed!

  11. I’m so glad I stumbled across your blog. Parenting is super hard!! I also have two precious boys and I often worry about my little one, Master A. And I have a tendency to compare him with his older brother who, although a preemie (31 weeker) did everything early and currently is in first grade reading on a fourth grade level. Master A had struggled with seizures and often has signs of anxiety that even after visiting multiple doctors and neurologist is still undiagnosed. I blame myself for his delays due to the fact that I decided to return to school when he was only four months old. Working full time and going to school full time has not allowed me enough time with him. But I’ve learned we do the best we can. And for my boys, it is busting my ass through school to provide them with a better future. You are doing a fantastic job by seeking early intervention. Keep your head up, my prayers are with you as you go through the next few weeks.

    • No! Don’t blame yourself! If you are getting an education and working you are being a wonderful example to him! The thing I’m learning is our kids are who they are. We can hopefully shape them a little, but we need to not blame ourselves when things are not perfect.

      And thank you for thinking of me, I appreciate it very much.

  12. I believe your writing will allow others facing the same concerns a sense of relief, a hope and an opportunity to accept that being a parent does not offer perfection, at any given point. It does, however, guarantee that a parent never stops learning, their shoes are simply larger than their child’s.
    Try not to beat yourself up over a diagnosis, a challenge to be met. There isn’t a loving parent alive that has ever qualified for the ‘gold star’ … The blue ribbon achievement for being on top of everything. All you need to remember is the love you share.

  13. Hang in there, I know what you’re going through! My son (has Septo optic Dysplasia which often presents with developmental delays) was 3 and the only words he said were “Mama”, “No”, and “Ball”. He began working once a week with a speech therapist and for nearly 5 months there was NO progress. I was so discouraged. Then one day, at 3.5 years old, he spoke clear as day “Mama, can I have a cookie?” I laughed, cried & almost peed my pants. From that day on he spoke almost perfectly, you’d never know he’d been delayed. He’s 13 now, plays football, secretary of the ASB, and got a 4.0 last year! I just want you to know, an early delay doesn’t reflect on you, or on his future prospects. Maybe your little man is just a stubborn strong willed little turkey like mine was who doesn’t want to talk until he’s good and ready. 🙂

    • Had to google Septo optic Dysplasia, glad your son is doing so well. Your story made me laugh. My C is a stubborn little guy, who knows what will happen. We will just try and support him and make sure he has the resources he needs.

      • That’s all you can do, and keep the faith that it will work out the way it’s supposed to 🙂

  14. As I was reading your post, my first thought was–get his hearing tested! (I teach deaf and hard of hearing children and it’s always my first suggestion when I hear about a young child with a speech or language delay.) When you mentioned your son’s chronic ear infections, I knew this was the cause of his speech issues–not inferior parenting. Some children are prone to ear infections. It’s just the way they are. It’s not a reflection of your mothering skills. Give yourself a pat on the back for being such an awesome mom that you’re getting your son support and be confident that he’ll be fine. He really will! Nanette

    • Thanks so much for your comment. He did get tubes in March and he’s only had one ear infection since, which is amazing. During all the appointments surrounding the tube surgery C did have his hearing tested several times and with the tubes in he seems to be just fine in that department!

  15. Thank you for sharing your story. It is evident you have so much love for your children, your family. I have three grown children and have suffered much from what my friends and I call “Mother Guilt”. We are imperfect people and are not able to be perfect parents. You have done so well to get the early help from good professionals. I believe your kids are very fortunate to have you for their mother. I wrote a poem on my blog about Mother Guilt you may want to look at. Here’s the link: http://faithfullparenting.wordpress.com/ or http://backfromtheborderlands.wordpress.com/2013/07/03/mother-guilt/

  16. It is this kind of openness and honesty that is helpful to so many others. I love reading stories like these that share the everyday concerns and fears of most of us, and include the steps taken to deal with and remedy it.

    I don’t need to tell you that you’re not a failure as a mom, and yes, I do relate to that certainty. If I were to judge your efforts so far, regardless of the final speech outcome for that little one, you will have raised a fine addition to the human race.

    By the way, I really had to smile at one of your phrases though. “Jesus fucking Christ” was my first full sentence at age 2. I didn’t turn out to be the reprobate that might have suggested I’d be. 😉

    • Thank you. Talking about the hard stuff makes it all so much easier to navigate. And I love your first sentence. While I have a major potty mouth in writing I’ve cleaned up my language around the boys. So far so good-the oldest hasn’t been caught swearing….yet.

  17. I don’t think I’ve ever met the mom of a special needs child who has not blamed herself for what’s ailing her child….including myself. Stop it!! Your child sounds like my older one. She also never spoke a real sentence until she was about 4. She was enrolled in a special needs program at that age but then her hearing loss was not identified until she was 6 and then other things have been discovered along the way thereafter. Part of the “late” discoveries was that she had no problems with ear infections as a baby, she knew her alphabet, she could read and count and do puzzles. –she just didn’t fit into the categories of a special needs child, except that she just didn’t speak much.
    Anyway, yes parenting is hard, and I hate it when some people walk around trying to make it look like it’s the easiest thing in the world. I’m so happy you’ve had early intervention services and don’t worry. You’ll have tons of support from other parents just like yourself.

  18. We do our best as parents but not everything depends on us. Early intervention will help your little boy should he need help. Do not beat yourself up about something that is clearly not your fault.
    Watching your little boy trying to open the car I would say he is doing a great job. Clever little guy! Adorable!!!

  19. My heart went out to you, there is nothing anyone can say that will rid you of that awful feeling when you hear your lovable child has a puzzling problem but he is very lucky to have you, he and you will come t hrough this, my son did and continues to be a joy to all of those around him and he is 25 this year. Just grit your teeth keep smiling and know that it will get better.

  20. You’re doing a great job, momma! My 2nd child followed in her big brother’s do everything early footsteps. Number 3…not so much. Ear and sinus infections *nods head*, strep throat *yup*, lots of respiratory junk. I didn’t even think about it being an issue, even after my doctor said “maybe he should have more words?” Nah, the other two talk for him. He just doesn’t want to. Ooops…Sean’s got allergies and always had fluid on his ears. We ended up doing speech therapy until he was three. She confirmed I was partially right. He didn’t want to talk. He could when he REALLY wanted to, but he didn’t want to often. He’s not in college on scholarship, but I’m cutting myself some slack…he’ll be 9 in December. He’s doing ok though. I’m sure your C will be fine in the end. Everyone else is correct too though…cut the guilt. There are lots of things you’ll feel guilty for over the years, try to let it go before the next thing shows up. *making a note to read a book to my toddlers during the day tomorrow…*

  21. Great piece, and good luck with your formal evaluation this week! My little guy qualifies for early intervention services because of his time in the NICU (preemie), and I agree that this program is the easiest bureaucracy I’ve ever dealt with. Good luck to you and your little man!

  22. Good luck with the coming evaluation! Drop the Mom guilt – not everything is our fault (I have 3 kids, I know Mom guilt!). My middle one didn’t talk because first born was so quick to provide an answer. Middle one would practice talking in a whisper, in a corner (it was really cute). I’m sure your C will be just fine. He and T may walk different paths, we all hear the beat of a different drum.

  23. Congrats on the Freshly Pressed. I also went through early intervention and the frustration, struggles, comparisons, worry, and helplessness in seeing my little guy just being a guy, and me seeming like I couldn’t be a parent. You love your guy and that’s what counts. Getting him support is amazing. My little guy is now starting Grade 2, doing some advanced classroom work, and — apparently– a natural leader. It would have been much easier to know this was going to all work out when we were in the middle of it. But looking back I see that we loved our kid and we were doing what we could in that moment. Trust yourself, and give yourself a pat on the back. You’re doing great.

  24. Love your honesty, and totally get it with your crazy-mixed-up-feelings. My first-born was born with serious problems. My youngest developed hers on her on as a teenager (who doesn’t), and young adult. With each, their triumphs and failures felt perso.nal. It does get very complicated, and you know what? It’s totally worth it

  25. Mother’s guilt is the worst! I am sure that even the mom’s with the best, most well-adjusted, healthiest, cleanest, smartest kids still have that nagging guilt, because we will always find something to nitpick or judge ourselves for. I have to remind myself every day that God loves my kids more than I do, and he will make sure that they are ok, because I just can’t do well enough for them!
    Anyway, what I am am trying to say is YOU ARE NOT ALONE!

    • What state do you live in? Services vary, but in NY state the screening and therapy is provided to residents without cost.

      Google “Early Intervention” + your state and you’ll find plenty of info. What does your pediatrician say? Is your daughter in school or daycare? What do the teachers say?

      Our pediatrician and his teacher-to-be encouraged us to seek help. His evaluation was yesterday and he does qualify for help in communication.

      The evaluation was scary and stressful, but I am so glad we did it. We are getting him help. You know what is best for your daughter, but it might not hurt to investigate what resources are available to you. I wish you luck.

      • Unfortunately I am not from the US, We may have early intervention clinics here in the Philippines but they will cost a fortune. She is not yet in school and not in day care too. I teach her at home which can be hard because I have a full time job. She does speak but would refuse to say some words (like her name or her brother’s name). We used American Sign Language since she was 7 months old and she has dropped most of the signing since she is slowly shifting to actually speaking the words. My concern is she cannot speak in sentences yet. Mostly just 1 or 2 words when she is trying to communicate. I am not sure at what level should a 2 year old be when it comes to speech. I want to look for help but I am scared at the same time. We speak English and our native dialect at home, I am not sure if that is also a factor. 😦

      • So sorry for assuming you were in the US! And my advice should be taken with a grain of salt, I’m no expert. But can you ask her regular doctor? My nephews are being raised bilingual and my sister did a ton of research-those kids tend to take a bit longer to talk because they are sorting out so much. My sister read that they actually are talking, but the parent might not recognize what language they are speaking at any given moment.

        My guy just turned two, but I’d be happy for just a few words! Good luck!

    • I’m raising two bilingual daughters (German and English) in Berlin, Germany. I was worried because my first, M, is still not speaking much at the age of 2 and a half. She says single words, and gibberish. When I started voicing my concerns to our paediatricians when she turned 2, they just waved their hands and said “Relax! If she’s in a bilingual environment, it will usually take longer.” The most important thing, said the paediatrician, is whether their “passive vocabulary” is there. In other words, if the child understands you when you talk to her, then that is the crucial thing.

      • Thank you for this comment. I am feeling quite relieved a little. Yes she understands what we tell her and she can follow instructions quite well. She speaks in single words but has started to talk in 2 words just recently. We have not seen her pediatrician regarding this concern and will see her in a couple of weeks.

      • Yup, the understanding piece is key. Thankfully my guy does understand English. He did qualify for intervention, though. And he’ll be reevaluated in 6 months after twice weekly speech therapy. Good luck with your gals. Teaching them to be bilingual is such an incredible gift.

  26. My second born was diagnosed with a severe articulation delay. First born was speaking at 8 months (her first word was “apple”!), second one only said a handful of clear words by 2 1/2. She had speech therapy for 8 months, and was cleared from the program. It was a complete turnaround. Last year, at parent teacher conferences, I asked her kindergarten teacher about the speech. The teacher didn’t know our daughter had ever needed speech therapy. Early intervention is wonderful. It helps to correct the issue before it is ingrained. It is not your fault, and working to get the therapy is just what a committed mom would do. Best of luck!

  27. My daughter (3 now) didn’t talk until after her 2nd birthday. I was so worried and would always bring this up to her pediatrician. We switched pedi’s when she was about 18 months. Her first pediatrician made me really worried because she wasn’t doing a lot of the things he said she should and he seemed puzzled by it. When I switched pedi’s her new pedi didn’t seem as worried as the first when I brought this up to her, we were also speaking two languages in the home and she wanted to wait until she was 2 1/2 to do evaluate her. Shortly after her 2nd birthday she started talking like crazy and now speaks more like a 5 year old than a 3 year old. We now have a 13 month old baby boy and he is much more vocal than she was. She hardly ever babbled! And he’s been babbling since he was like 3 months old and says a few words but not too many. They all develop at their own pace, but I think you are doing the right thing by making sure your baby is ok and doing what mother’s do! Taking the best care they no how of their children! DONT DONT DONT feel like a failure because you are doing everything RIGHT!!!

    • Thanks.

      And thanks for telling me about your kiddos. My sister and brother-in-law are raising their boys bilingual as well. She did a ton of reading on it and kids learning two languages can seem to talk a little slower because they are often mixing languages, or using one language while the parent thinks they are using the other. Major gift you are giving to your kids, by the way. I wish I knew another language and could teach my boys. Although, at this point we need to just figure out English with C!

  28. Thank you so much for sharing this. The fear and shame that comes with an evaluation is so prevalent, yet rarely discussed. You bring me back to the fear I had when my Picasso (also 4 now) was recognized to have delays and evaluated for early intervention. I fell in love with his speech therapist though, who was both his therapist and a mentor to me in those early days of parenting. I was quite sad to lose her when Picasso turned 3.
    What I’m trying to say is, hang in there. You are not alone–not with the need for speech therapy, and not with the feelings you are having as his mom. Work hard at believing this is not your fault. He is well cared for with a mom who will go through the process of evaluation and intervention, despite your own fears.

    • Thanks so much. You know, I’ve found it is near impossible to actually prepare for this parenting business because you never know what your kid’s (or your) challenges are going to be. The best you can do is be ready to roll with the punches!

  29. I can’t imagine how hard that is. You seem well equipped to handle it. When I was learning to be a therapist i read a line that said something tot the effect of, “When you get a flat tire, it doesn’t matter where the nail came from, fix the tire.” I guess that I mean that to say that there isn’t anything to do about what has happened to this point, only what you can do in the present and future. Keep up the good work!
    http://jwolffblog.wordpress.com/

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