The Reality of Not Catching Up by 2

Don't worry, preemies catch up by age 2. 

Well, that's what they say anyway. I've been struggling with the fact that Cohen, in theory, should have been "caught up" by the time he was two. He will be three soon and he's not caught up. Oh sure, he's on the charts now and when people ask us if he's "normal" now, we generally say yes. Because he is normal to us. 

Last month we took Cohen in to the doctor to express some concerns we have with some of his behaviors and lack of fine and gross motor skills. Today I was wandering through the notes from his pediatrician and there it was...sensory integration disorder and developmentally delayed. For some reason, it hit me hard. Really hard. It's a hard pill to swallow. We've known that Cohen isn't where his peers are. Knowing it yourself and then seeing it there in black and white is different. His doctor has recommended that we take him in for a comprehensive evaluation, which we will be doing in June along with a few other appointments prior to that. 

My sweet, sensitive boy who has overcome so much is delayed. Trust me, I know it's not the end of the world. I know that things could have turned out so differently, I don't need to be reminded of that. The labels don't make a difference to us. It's just hard for this mom's sensitive, protective heart to see those words. To see confirmation of what you've known but have been hoping you were wrong about. 

Cohen has always been "delayed". This is why preemies are given an adjusted age, to account for the fact that really they weren't supposed to be born until weeks or months later. But remember? "They" say he was supposed to catch up by two. And yet, here we are. He lacks a lot of motor skills. He grunts or yells at kids, even though he has the words, he can't always seem to make sense of them or use them appropriately. Some days, everything is a battle. Not just because he is exerting his 2 year old need for control, but because in his brain, he can't focus and can't process many of the things around him. I struggle with knowing how to help him. 

As parents, we just want to protect our children. We don't want them to get made fun of on the playground or feel like they aren't good enough. We are starting to realize that the things he was supposed to grow out of as he became an ex-preemie, may be things that he struggles with for years to come, maybe even a lifetime. I don't need Cohen to be the best at everything he does. He doesn't need to have straight A's or be the captain of the football team. I just want to be able to teach and guide him to be the best Cohen that he can be. However that looks, if he catches up now, in the future, or if these are things he will deal with his whole life. 

Making Strides

While at his every other week OT session, Cohen voluntarily got in a swing (unstable), played with toys (no walls), and spun around and around and then asked to do it again! This absolutely would not have happened a few months ago. I was one proud mom. 

Cohen has been going to his OT since he was 10 months old. We noticed fairly early on that he had some behaviors that were just a little different. He always had his arms straight out to the side, didn't sit up, and couldn't focus on anything near him. We often described it as always being "out". He didn't know he had feet, didn't bring his hands together, and was always looking at things that were far away and not focusing on toys etc close to him. Within a few meetings, he was learning new things and making lots of changes. 

As he grew we continued to notice that he had trouble focusing, had poor balance, was clumsy and very sensitive to certain sounds. We attributed it to a poor vestibular system and hoped he would continue to grow out of it. He has come a long, long ways. Awhile back we moved to once a month OT sessions but over the last several months we have been going every other week and it seems to be making a difference. A few months ago he refused to get in any type of swing (other than one of those baby swingset swings) and if we could get him in he would only go in for a few seconds and whimpered and clung onto Susan the whole time. Now he voluntarily climbs in and actually enjoys it! He can (usually) go down stairs well, has been climbing furniture, he even attempted to jump! Seemingly little things, but big things for a little boy who has struggled with physical tasks and balance/planning issues.

I've read some interesting articles and heard from other preemie parents whose children struggle with ADD/ADHD and anxiety. They seem to go together and they seem to be quite common in the preemie population. It makes total sense, it really does. The combination of being born too early before their neurological systems are finished developing, being put in an environment that is anything but soothing and filled with alarms, noise, lights and painful procedures, you can see why a baby/child would struggle with this. Obviously Cohen is too young to be diagnosed with anything like this, but I have been seeing a lot of this in Cohen and as you know, I struggle to know how to help him. It's hard to have the kid who plays alone in a back room or hides in the closet at a playdate. But, it's nice to know that we aren't alone. I struggle with knowing what is a result of being a preemie, what is sensory, and what is just his personality. It's a strange, difficult combination of things to figure out.

He has overcome so, so much and we are just so proud of him. I love seeing his confidence grow as he finds he is able to do more things. He is an amazing little fellow who continually keeps us laughing and on our toes. He has grown leaps and bounds and come a long way and we know he will keep meeting life's challenges with a strong spirit and determination. 

Seeing What I See

Cohen's sensory needs have been subtle to the outside world. When he is in a different environment, it's enough new stimulation for him to get what he needs and he is able to hold still, play, and even be fairly calm most times.

At home, it's different. He's not naughty. He's busy, wild, almost frantic at times. His need for sensory input and stimulation is higher. He gets so wound up that he becomes increasingly clumsy, "needy" (he yells "see mom", "see dad" and NEEDS to be like right.on.top of us even when we are right there with him), and anxious.

When I think about it, it makes total sense. The nervous system doesn't finish developing until late in pregnancy and Cohen didn't get that chance. Not only did his system not get a chance to fully develop, he was put into an environment, even though the NICU did the best they could, that was far from womb like. He had a tube down his throat, lights, noises and lots of frequent activity. When Cohen was tiny, we weren't allowed to rub or stroke him or do any gentle touching for this reason. The only way we were allowed to touch and hold him was by cupping his tiny body between our hands, one on his head and one on his feet and giving him that "closed in" feeling. His brain didn't know how to process it then, and still doesn't know how to process it now.

He's not naughty, he's not doing it on purpose, his little body just doesn't know how to handle everything that's thrown at him and he just is like a top spinning out of control. There are days where he literally does not stop moving. Where you can see his little body almost shaking. His mind is ahead of his body and he can't physically keep up with what he wants to do and that doesn't help either. He gets anxious and almost frantic. When he gets like this, he can't play independently, he can't calm himself down, and often times we can't either.

It's so frustrating to not be able to help your child. We don't know what's going to cause him to get to that phase. We don't know how to stop him from getting there. Danny and I often send each other text messages that are either "Cohen is being really strangely calm today" or "Cohen is impossible". And again, NOT that he's being naughty but that it's just one of those days where you can't find the right book, you can't pick the right food, you can't give enough attention even though you are giving all your attention. And it's tiring. And it makes me feel horribly guilty for running out of patience and wanting a break.

But finally, someone other than Danny and I saw it. Sure, other people get glimpses from time to time, but today, someone really saw how we live 80% of our days. I'm glad that someone finally sees and understands, but I'm also sad and frustrated that Cohen has to spend his days like this. I don't want him to be anxious and feel out of control. It stresses me out just watching him run around and fall and not be able to focus on anything, I can only imagine what it feels like to him and I can't fix it. A hard day, but glad to be validated.

OT Update

Cohen is still seeing his wonderful OT. We had pushed back to once a month and had him involved in a sensory playgroup once a week. The playgroup turned out to be a little challenging with the once a week commitment and a newborn and the one on one attention of his OT seemed to be a better fit. So now we are back to no playgroup and seeing his OT every other week and it seems to be working well.

We are still working on some of his ongoing sensory issues, mostly related to his ability to regulate himself. He has struggled for a long time with his balance and knowing where he is in space and whether he feels secure. He hates being in anything that isn't sturdy and supportive, so while he loves his outdoor baby swing (that we have inside) he gets really anxious in anything without structure like hammocks or swings without walls.

While we were at OT today, I was talking to his therapist and as I was recounting to her the postive things we have noticed, I realized there were quite a few which is encouraging! We are still hoping that this is something Cohen will grow out of once his systems figure out how to work properly.

As I mentioned above, Cohen has struggled with his balance and feeling secure in an upright position. For weeks before he started walking I had a feeling that physically he could walk but that he was too nervous and didn't feel safe in that position. Since he started walking he has been incredibly clumsy, tripping and falling constantly, even more so when he is tired. At one point he could hardly walk over a crack in the sidewalk or go from cement to grass without an issue. And this last week, we noticed that he was going down the stairs, standing up, all by himself! This may not seem like a big thing, but it is for him, number one because he has the balance and ability, and two because he has the confidence to do it without feeling unstable.

The other night we were sitting around and it was past Cohen's bedtime but he was sitting nicely with us so we read a few more books. And then....he snuggled with Danny...and actually fell asleep in his lap!! Aside from kangaroo care in the NICU and a few newborn snuggles at home, Cohen has never snuggled us. When he was tired and ready for bed, he wanted to be in his crib alone. He has with us in our bed one time in two years and only because he was sick. So to have him actually snuggle with us was a pretty big deal also. Danny and I just looked at each other and debated whether we should put him in bed, but since it has basically never happened, we just sat and enjoyed it.

And one more small victory. Cohen has been less of a wreck (to put it nicely) before bed. The crying and "wild man" activity level, tripping, falling, and melting down over every little thing has decreased greatly. I'm crossing my fingers that it will continue to be better!

In OT he continues to work on retraining his vestibular system, which is the system that controls the things we are trying to work on -- balance, regulation, sensory sensitivities. He spends lots of time in various swings, climbing ramps, and playing in sensory bins.

I was so proud of him as I told her all of his "little" accomplishments. While his sensory issues are quite minor compared to what many other preemies face, we are still so proud of how far he has come and the things that he continues to overcome. Go, buddy, go! We are also planning to take him to the chiropractor this week to see if that helps at all.

As a side note, because I'm sure he will be proud of himself someday, Ezra managed to destroy two diapers, a complete outfit of his, two shirts of mine requiring me to borrow one from his OT, and my pants (those I left on).

Cohen's Therapy

Thank you for all your kind words after the post about story time. I'm glad to know that many of you have kids who would have been playing right along with Cohen. I'm not sure where all those kids were that day, but they definitely weren't at story time!

Many of you have asked what we do to help Cohen develop his vestibular/sensory system a little better. For him, it seems to be about his movement. We do a lot of swinging. We actually have a swing in our house, because when you live in the northwest it rains 362 days a year and it's hard to get outside in the winter. So we have a regular outdoor swing attached to a pull up bar in the doorway. This is nice because we can take it down when we aren't using it and it isn't anything permanent. Cohen would literally spend hours in his swing if we let him. I think he likes the sensory input he gets from the movement. Sometimes if he is just super busy and we can't quite get him to focus on anything, we put him in his swing and he just relaxes.

{Cohen has been swinging for quite some time and is now an expert}

Cohen also spent some time doing therapeutic listening. He has cds from his OT that are some kind of special music where certain pitches or sounds are taken out and then added back in. It sounds crazy and distorted but somehow is supposed to help with organization in the brain. We aren't as good about these as we should be because Cohen is supposed to stay within 5 feet of wherever the music is coming from and well, that's pretty impossible unless he is in his swing, which is generally when he listens to it.

{Cohen also gets to ride horses at therapy when it's nice out!}

When he is at therapy, he plays in a lot of different types of swings. The goal is to have him experiencing movement of all kinds back and forth, round and round, and side to side to help him develop the vestibular system (that helps with movement and sensory regulation). He was swinging in a hammock the last time at OT and it was amazing just to see him relax, like almost falling asleep, and focusing on and actually playing with a toy for more than 5 seconds. We are looking at a way to be able to get a swing like this in our house since Cohen is now only going to OT once a month.

{Another type of swing at therapy. If he looks exhausted, he is! It's a lot of hard work for him}

As I've mentioned before, his issues are fairly minor compared to what he could be experiencing because of his prematurity. But, we would still like to take care of them as much as we can early on so that they don't become bigger or ongoing throughout his life. He's been through enough already and we want him to be able to take on life the best he can so we will help him do that however we can.

The Ongoing Sensory Puzzle

For many months, from when Cohen was a baby and now again recently, I have wondered about sensory issues with him. When he was a baby, he didn't know how to regulate himself or calm himself down. He was always out in what we called "airplane mode" with his arms straight out waving around seemingly seeking input. We made great strides with his OT and things got way better.

Now, over the last few months, I have continued to wonder if he still has some of these sensory issues. He is a busy boy and I hear lots of "Oh, he's a boy, boys are busy" or "Yeah, my child is busy too". And yes, I definitely think that some of it is that he is just a boy who just has a lot of things to do. But sometimes it seems like a different kind of busy that is hard to explain.

When we went in to OT yesterday, she asked me where I thought we were at. I told her I was happy with how Cohen was doing overall but that I was still struggling with knowing the difference between a regularly busy baby and one who was busy but there seemed to be something else going on. I told her how he will sit in his swing for hours perfectly content. He also still likes to be in his crib in the dark or in contained places. She suggested that he may still in fact have some problems with his vestibular system.

The vestibular system  "contributes to balance in most mammals and to the sense of spatial orientation, is the sensory system that provides the leading contribution about movement and sense of balance." (From Wikipedia). We have suspected for awhile that Cohen may be having issues with this and we decided that he probably still is. This would explain why he took so long to walk when we felt he had the ability to do it but was hesitating. It also explains why he walks so cautiously and only about 50% of the time. It also makes more sense why he hates being laid down to have his diaper changed or get dressed (yes, some of this is normal for a baby his age) but he fights us greatly as we lay him down. This also explains why he loves to be in his swing, he is upright and gets to have the sensory input. When Susan tried to lay him in a hammock to swing him, he acted panicked because he wasn't upright but at more of an angle or laying down. This vestibular system also is part of his sensory system and could explain why he seems to so constantly be seeking input. His little system isn't quite processing the movements and positions in space the way it should be. 

And of course, this all goes back to Cohen being a preemie. The vestibular system develops later on in pergnancy, after most preemies are already born. Add to that the constant stimulation of lights, noise, not getting the "squish time" inside, the tubes, wires, needles, etc and you have one overstimulated baby struggling to make sense of the world he isn't supposed to be in yet. 

The pieces just seemed to fall into place. There was something that just seemed off. Nothing overly dramatic, but just different. I felt validated when Susan acknowledged that yes, he does seem to have these lingering vestibular/sensory problems. It's nothing that can't be fixed and most likely won't be lifelong. Just one of those preemie things, I suppose. 

The Littlest Cowboy

Cohen has been riding horses as part of his occupational therapy. At this point, he lacks the balance or upper body strength to stand/walk, so the idea is that riding the horse makes him figure out how to keep himself upright. He seems like he is so close to walking. I know if it was up to him and everything was in order, he would skip walking and go straight to running. I'm hoping that within a few more weeks of horse riding and OT he will be there.

For some time, Cohen was seeing two different OT's. One came out to the house and one we went to see. I have to say that while we enjoyed our time with the therapist who came out to the house, we didn't feel like we were being given solutions to Cohen's issues. It was kind of an accident that we stumbled upon our current OT, but I am so, so glad that we did. It's not that there was anything wrong with the 1st OT, it just wasn't a great fit with our family and our needs.

{Ready to ride}

 {Waiting for his horse}

Within our first couple of visits, we were seeing huge changes in Cohen. We were reassured that most likely, the problems we were having wouldn't be long term and that there were things we could do to help. Cohen was having a number of problems with development steps that he missed because he was premature and spent a lot of time in the NICU. He didn't know how to self soothe, was needing to be swaddled constantly, and we were fighting him to eat. It was frustrating to not know why this was happening or how to help him. We breathed a huge sigh of relief when we found out that Cohen just needed to fill in in a few steps that he missed. Even if she had told us that these were going to be ongoing or permanent issues, we would have been relieved to know that there were ways to help Cohen.

 Susan has given us hope and we have seen some incredible changes in Cohen. She is incredibly insightful and able to explain things to us in ways that make sense as well as offering ways for us to help Cohen become stronger and more confident in his abilities.

I am so thankful for all the resources that are available to us. I'm so glad we found Susan when we did, at a time of incredible frustration for us and for Cohen.

The Busy Boy

We have had a few meetings with our new OT and we really like her a lot. I've been meaning to post about it, but just haven't gotten around to it. Of course the day we took Cohen in for his evaluation, he wasn't feeling that well and cooperated nicely with everything she tried, despite my telling her that this was not his normal behavior. Thankfully, his regular OT was there and she could vouch for me that this wasn't typical for him.

The good news is, she thinks that all of his "issues" are a result of his prematurity and she doesn't think that they will be lifelong things. We would have loved him and did what we needed to regardless, but I am glad that these are things that we can hopefully work through.

We've been learning a lot of interesting things and finding new ways to help Cohen. Because he was born so early, he didn't get all that time squished in the womb in the fetal position. His brain also didn't get a chance to finish forming all of its neurological connections. Susan (his new OT) thinks that he just has a few gaps and when he learns or relearns those things then he will be much better.

Cohen is very "out" all the time. His arms are always straight out, his legs are always straight out, he is always looking far out and doesn't focus on things close to him very well. Again, this goes back to not getting all that time in the womb to be in a flexed position. Instead he was out in the world in his isolette, and while the nurses tried to make it as womb-like as possible, it's just not the same. Cohen has little awareness of "in", his own hands and feet, he has trouble focusing on faces and things that are close to him. Being in the out position all the time is an alarming thing and it causes him to get very restless and fussy and busy

 Cohen's other big issue, that goes along with the above, is that up until recently, he was always in an extended position with his back arched. He learned how to do a lot of things by arching his back and now we are trying to get him to be in more of a flexed position, which is more comfortable and less alarming and how a normal baby would be. Susan finds it interesting that Cohen can get up on all fours and try to crawl but he isn't able to sit up. He can't sit up because he doesn't have very good core muscles (he needs to work on his six pack!) because he is always in the extended position. Because he is in that position, he gets stressed and moves around way too much to even think about being able to sit up. Get the picture? It all goes back to those things that seem so very basic, but that he just didn't get because of his prematurity.

After just 3 weeks of meeting with Susan, we have already seen some changes that we are pretty excited about. She has showed us how to play with Cohen and help him notice things like his hands and feet. I think I mentioned this before, but at one of his appointments Cohen grabbed his foot and put it to his mouth for the first time ever. I almost cried because it was just such a "normal" baby thing to do. Since then, he has been getting better about finding his feet on his own. I've even noticed when he lays on the floor that he has his legs flexed up now instead of just straight out all the time. We have also been doing a few things to help him learn to be more in the flexed position instead of extended. We have learned to play with him in ways that help him and we hold him in ways that teach him to not to always arch his back to get what he needs.

It is kind of hard because a lot of it means that we are sitting there with him for most of the time that he is playing, keeping him in a certain position, or keeping him interested in the close up instead of focusing on all the far away things. But, it has been so great to see little changes in him already! Danny and I were getting ready to eat dinner and we looked at each other and just commented on how calm Cohen was being. We were able to both eat dinner at the same time instead of one of us having to keep Cohen happy.

 In case you missed Cohen's project, you can see it here. So far we have 30 sets of diapers sponsored, but the goal is 100! Don't let Cohen down. Did you know that 1 in 8 babies are born prematurely and there are 13 million preemies each year!? We never imagined it would happen to us, but it did. Donating to the March of Dimes helps fund their research for treatment of preemies like Cohen and also research for how to prevent preterm labor. Thank you to those of you who have already donated, it really means a lot to us. And also, look where Cohen and the diapers showed up yesterday!

Frustration

So, I'm sure you are wondering how our visit with the OT went in regards to Cohen's possible sensory issues. Well, of course, Cohen had been running a low grade fever and was just feeling a little under the weather. He was a perfect angel. He drank his bottle for her, he played with toys, sat completely still while she talked to him, didn't squirm, writhe, or arch his way out of her arms. I was thankful that his regular OT had tagged along and she was able to confirm that this was not his normal self. I was beginning to feel a little bit crazy. We go back tomorrow to see if she can actually do an evaluation.

It is very frustrating to not be able to give your baby what he needs. Or to not know what he needs. What works wonders one day does nothing the next. Some days, all we can do is put him in his crib, swaddled, in the dark. And he likes it. He will lay in his crib and talk and just be content for longer than he can play with toys or on the floor. It's frustrating that he wants to be alone. In the dark. By himself, not with his mom. Sometimes I feel like I can't help him and that is really hard. I can't be the comfort that he wants and needs. Especially when I felt like I couldn't really be his mommy for the 4 months he was in the NICU and then when we got him home I was supposed to be the one to be able to care for him however he needed. And I just don't feel like that's happening. And it doesn't feel good.

Lots of people tell me they had busy babies, but with him it just feels like there couldn't possibly be anyone busier! Some days I feel like I'm just making something out of nothing and some days I literally can't get anything done because I am constantly trying to keep him busy. The only thing that sort of makes me feel better is that other people have brought it up as well, so I don't feel like I'm completely off my rocker. I just don't know how to fix it or help me and that is the hardest. Some days I just want to scream and pull all my hair out. It's almost like he knows how hard he had to work to get here so he just wants to experience everything RIGHT NOW. I just have to remind myself that that little personality and fighting spirit is what helped him through. But, it's still hard. Totally worth it for this little face, but hard.

A Sigh of Relief

We breathed a pretty big sigh of relief today. After increasing frustration over fighting Cohen to eat, sleep, and play, we called his OT to come for an appointment. She usually only comes every other week but we decided to have her come this week to see if she could give us any advice.

 {We gave Cohen the plate to see what he would do and he picked it up and licked it!}

She went over a sensory processing checklist with us, and while Cohen is too young for some of the list, it was interesting to see the things on it and which ones he did or didn't do. She also thinks it will be beneficial to have Cohen evaluated by someone who specializes in this area.

 {He loves his spoon}

We also talked about the fact that we have to (literally) struggle to get Cohen to eat between his fairly constant back arching, squirming, and arm waving. We have had a pretty hard last few weeks and were hoping for some kind of help. She showed us ways to help Cohen "collect" himself. He seems to be a sensory seeker...constantly looking for sensory input. We learned how to hold Cohen with his legs up and his arms in with a little gentle pressure to help him get organized. She also showed us how to "squish" the baby, or give him a little massage to give him the sensory input he wants in a more positive way and help him refocus and settle down. After she gave him a little massage he actually SAT in my lap quietly without struggling to get away. It was pretty amazing and I was so surprised.

I had my mom give him a little massage while he was in his crib for naptime and he slept for 2 hours!!!! I think this is a first for us (or at least very rare). Generally, he sleeps for about 45 minutes at a time and is maybe awake for an hour to an hour and a half at a time.

 {Little boy in his big high chair}

When he woke up from his nap I put him in his little squeeze hold and then fed him his bottle and he drank the whole thing with only one little leg kick! I am really hoping this continues and that hopefully we have found a way to keep him (and us) happier. It's just so hard to have him be fussy and fight everything we try to do, even though we know it's not his fault. We just want him to be able to be a baby and play and have fun and not have to be constantly stressed out.

{Practicing eating his big boy cracker}

Please continue to pray for us as we look into this more and try out our new techniques. We are REALLY hoping they continue to work.