Good for the Soul

This past weekend I took the kids to see my family in Connecticut which was absolutely wonderful, and a much needed escape from everyday life these days. I was able to recharge and they had the time of their lives. They had the undivided attention of Granddaddy who is always thinking up new games to play with them and new things to teach them, and I was able to have a lot of one-on-one time with my mom, which we don't get very often. It was fun having Fox be old enough this year to get involved in some of the activities like dyeing eggs and the annual egg hunt on the front lawn. I was nervous how he would handle being in a new place, a new bed, etc. but he was perfect. As soon as we got there he started exploring the house... opening all the cupboards, petting the dog and just checking out the whole place. I was really impressed that he immediately felt right at home. I've always said that being there is good for the soul, and I think Fox agrees! 

My handsome man

 Fox found an egg!

So excited!

Romy Jane on the front lawn

 My girls

 My little ones

All looking at the camera!

One of the most special things about the weekend was getting all the grandchildren together for the first time. The girls met their new cousin, my brother's daughter Ali, when she was first born in February, but this was Fox's first chance to see her. It was so special to my parents to have both their children and all of "the grands" as they call them, together in the same place at the same time. Here's the first picture we got of all four grands together.

Ali, Quincy, Romy & Fox

Such a very special weekend.

xo Betsy

Ducks

This weekend while I was up in Connecticut for Easter, my mom and I decided to take Fox on a little adventure to Boston. I grew up near the city and one of my favorite children's books has always been Make Way for Ducklings. I remember being little and going on the Duck Tour of the city and I really wanted a picture of Fox with all the duck statues in the Public Garden. Well, easier said than done! When we first walked over to them he started to get a little nervous because there were so many people around, but I thought he would be ok. He held it together until I took him out of the stroller and put him down for his picture - at which point he just lost it. He was terrified of all the people, but more than that was the fact that the ducks are on cobblestones, which is pretty much Fox's nightmare. I've written before about how he is very sensitive to textures and won't walk on grass if he can avoid it, etc. - so just imagine how he does with cobblestones under his little feet! He tried to run off them, wobbling the whole time, but then he realized they were surrounded with mulch, which is, of course, his least favorite thing in the entire world. The poor little guy didn't know what to do so he just started screaming at the top of his lungs. Everyone stopped and stared at him, looking so confused as to why he didn't like the ducks. They were there happily snapping pictures of their kids riding the ducks, patting the ducks, hugging the ducks, quacking at the ducks - and they just couldn't understand why a kid would be so upset. I felt like they were all staring at us and I just wanted to yell "I'm not a bad mom, I'm not making him scream, he has sensory issues!" - but of course I didn't. We took a little break and walked over to see the swan boats, just trying to regroup a little bit and then decided to give it one last chance. When I put him down again he started crying but I stayed with him and tried to show him that everything was going to be alright. I touched the duck and showed him that there was nothing to be afraid of, and just tried to get him to focus more on that then what was under his feet. Eventually I was able to back away from him and actually get a few good pictures. He didn't last long, probably only a minute, but he did it. I love the pictures of him standing there alone because it was such a special moment - he got past his fear. I am such a proud mommy! Oh, and I definitely think he is starting to understand more because whenever someone would say "ducks" for the rest of the weekend he would start crying. :)

He was still a little nervous here, you can see a tear on his cheek...

... but then he warmed up to Mr. Duck!

 Fox & Nack!

So proud of himself!

Make Way for Fox!

xo Betsy

Rough Days

This week has been a challenging one. For the past 10 days or so Fox, who used to be a pretty laid-back little guy, has started having a lot of tantrums and just rougher days in general. We've had many days of constant crying and whining which is really, really hard. I think he's starting to get frustrated that he isn't able to communicate. Most children his age can tell people (either with words or gestures) what it is they want or what it is that's upsetting them, but he can't, which has to be difficult for him. And it's challenging for me because I just don't always know immediately what it is that he wants. With an infant it's usually pretty easy to figure out why they are crying because it's generally just that they are wet, tired or hungry... but with a toddler it could be something much more complex, like the fact that I gave him the red sippy cup when he really wanted the blue one, and I just have absolutely no idea why it is he won't stop screaming. It's so hard to see him so upset and not know what to do to help. I've started introducing some sign language and I'm hoping that if he picks up some of that it will allow him to a feel a little more in control. As hard as all of this has been on me, I know it's even harder for him. I hope that soon he is able to find a way to communicate with me so he can let go of all the frustration and just go back to smiling.

xo Betsy

The Mommy Microscope

I've realized lately that I have to try my best not to look at Fox under a microscope. It's hard with all the issues going on not to overanalyze every little thing. For instance, he hates getting a bath. Hates it. He kicks, screams, tries to climb out and breaks down into hysterics the entire time - every time. If I carry him into the bathroom even just to look in the mirror he starts crying because he thinks I'm going to start running the water. Now, I'm sure a lot of kids his age hate the bath, but of course my mind jumps right to sensory issues which are common in children with autism. If we didn't have everything else going on I probably wouldn't think twice about it and would just write it off as a kid who hates water - no big deal. In fact, I'm pretty sure Quincy went through a similar stage and it didn't worry me at all. But there are other things too... for example he will not walk on the grass if he has a choice. If we are in the middle of a field he is ok with it but in the backyard or outside school he will not go off the brick path. If I pick him up and put him on the grass or the mulch he starts crying and won't move. The other day when we were playing outside he accidentally ventured onto the grass while chasing a ball and as soon as he realized what he had done he froze and started screaming for me to rescue him. He also won't walk over the doormat because it is a different texture - I have to carry him. It's so hard for me to know what is just a quirk and what is something to actually be concerned about. I try so hard not to look at him under my mommy microscope, but I also don't want to miss something that is important to notice and bring up to his doctors. I have realized that I just have to make note of everything, but remember that some of these things are common in all types of children.

xo Betsy

The Small Things

This morning when I was getting Fox dressed and I said "Foot!" he lifted his right foot up to me - hooray! I have been working on this with him for months, so it's a very big deal that today he finally got it. Now, he may not do it again tomorrow, but for today he did and for that I am grateful. It's funny, with the girls I probably never would have even noticed they did it and I certainly wouldn't have noted it as a huge milestone, but with him it is definitely a big moment. I don't take the little things for granted anymore like I may have with Q & R. It takes Fox so much longer to learn to do things, so every little achievement is a huge success and reason for celebration. I've learned that he is just on his own timetable - which is ok - and I'm glad that he has made me slow down and cherish all the small things so much more.

xo Betsy

The Other Stuff

When I first found out what was going on with Fox the only thing I thought of was how I was going to do everything possible to help him. The best doctors, the best therapists, the best everything. I still feel that way of course, and I will do absolutely anything to get him the help that he needs, but I also recently realized just how very expensive all that is. I think that happens with a lot of parents of children with any kind of  medical problem... your first focus is just doing whatever you have to do for your child, and then after the dust settles you realize the other stuff that goes along with that. I know moms who have had children in the hospital for a long time due to prematurity or other conditions, and of course your only focus during that time is getting your child well - but then you come home to thousands and thousands of dollars in medical bills that just add to the stress you are already under. I am thankful that Fox receives Early Intervention for 4 hours a week, but if I want to get him started with some additional private therapies, which I think would really benefit him, the cost is very high. Getting him just one hour of private therapy a day (M-F), would cost approximately $3600/month - yes, $160/hour! It's stressful enough having a child with special needs without having to also worry about the expense. I am very thankful for Early Intervention, but I wish that there were more programs available to get children additional help at a reduced cost. And I am also very thankful that Quincy & Romy are doing so well because it's hard enough trying to figure out how to afford everything for one child... I can't imagine trying to figure it out for two or even more, which a lot of people do. It 's an awful thing to have cost be a prohibiting factor in getting your child the help they need, but that's the reality for a lot of people, which is just so sad and frustrating.

xo Betsy

Waiting

I called this morning to check on the status of getting Fox an appointment with the developmental pediatrician at CHOP. I sent his packet in January, they confirmed they have received it and someone should call me in the next 2 months to schedule an appointment for about 2 months after that - which puts us right around August/September. Having to wait 9 -12 months to get him seen is just so very frustrating. Early diagnosis and treatment is so important and being put on hold for this long is difficult. I've never been good at waiting - for anything - so this is really testing me. I've had to accept (or try to!) that it's just the name of the game and there is not much I can do to change it. Instead of focusing on the next event, the next therapy, the next appointment, I'm doing the best I can to focus on the right now. To enjoy every single moment and not keep worrying about what tomorrow may hold or how soon it will come.

xo Betsy

The Name: Almost Today

A lot of people have asked me about the name of the blog, Almost Today, and its meaning. It's actually a name I've had in my head for a very long time. My freshman year in college I remember sitting at my desk and reading a book where those two words were next to each other in a sentence and they really stuck out to me. I scribbled down Almost Today, in green pen, on a scrap of paper and stuck it in my journal. I thought that maybe I would use it someday for the name of a book, or a poem, or a painting. I didn't know exactly why but I knew that it had special meaning to me and I should hold onto it. Now it all makes sense. One of the hardest parts of this journey is trying to get answers - waiting and waiting and just when you think it's the day you'll get more information, you don't. There are all these hopes that today you'll find out something new, but instead you just wait some more. And there are so many times with Fox when he is so close to doing something we have been working on, like getting a piece of a puzzle in the right spot, or clapping during one of our songs, but he just can't quite get it yet. Or maybe he will do it once and I'll be all excited that he finally has it... and then he won't do it again. So many times I'll think "today is the day", but it's not - it's almost today. I think a lot of moms of children with special needs can relate to that feeling - that feeling like things are never going to happen - that feeling of being in a constant state of "almosts". And so the name of the blog was born, and now I know exactly why those words came to me ten years ago and I remembered them all this time.

xo Betsy

Big Tree

I recently started taking a photography class and decided to snap some pictures of the kids as part of my assignment this week. I just adore this picture of Fox that I captured. It shows his personality so well... cautious, but still curious. He couldn't see what was on the other side of that big tree, but instead of crying he tentatively tried to peek around it. He gets nervous in new situations, but I have recently seen him trying so hard to work past his fears. Good job, little man - I'm so very proud of you!

xo Betsy

Happy Monday

I just got a call from our Early Intervention service coordinator with wonderful news! We are going to be able to get a new occupational therapist as of May 3rd, and she is going to be coming twice a week instead of just once. We are also going to be getting an additional visit every week from our fantastic special education teacher. I'm so happy for them to not only find a better fit for us in terms of an OT, but also to be increasing his services to four times a week. I was really nervous about calling and expressing my concerns, but it paid off - hooray! I'm hoping that with these new changes we will start seeing some progress soon.

xo Betsy

So Much Love

Writing a blog is a scary thing. Very scary. It's not only putting your writing skills out there for the world to see, but it's also letting everyone you know (and don't know) into your life. Deeply into your life. It's so much easier for me to write than it is to talk, so I feel as though I'm much more free with the words here than I probably am while talking with most people in person. It's wonderful, but also makes me feel very vulnerable. I have to say that I am so completely overwhelmed with the amount of love and support I have received in the past few days. People that I haven't spoken to in years have managed to somehow find my phone number and call. Moms who have had similar experiences have gotten in touch with me and given me so much information, support and understanding. Friends I haven't seen since college have sent me emails expressing so much love for me and for my precious baby Fox. Neighbors have gone out of their way to come see me, give me a hug and tell me they are there if I need them. I have never felt more loved. Thank you so much to everyone who has taken the time to read about our journey, to everyone who has said an extra prayer for us and to everyone for just so much love.

xo Betsy

Wordless Wednesday

             

xo Betsy

What's My Name?

When I first met Fox's occupational therapist we didn't really click, but I decided to give her the benefit of the doubt. I realized that I don't have to be new best friends with her, as long as she does a good job with Fox. Well, unfortunately I have a few concerns about whether or not she is good match for us. She isn't very warm, which I think is what he needs. And she is overly concerned with getting herself sick. Nobody likes getting sick - we all wash our hands a million times a day trying to prevent it - but I'm just not sure you should be working with young children if a sniffle here and there is going to really, really bother you. The other day she came to see Fox and he started screaming and crying, which of course caused his nose to run a bit. He wasn't sick at all, but crying that much is bound to make that happen to anyone! Anyway, she got really upset that his nose was running and he could possibly be sick. Frustrating. And she calls him Max. A lot. I understand that Fox is an unusual name and may possibly be hard to remember, but she's known him for over three months now and it just makes me feel like she doesn't really care. And I understand that Max and Fox are sort of similar, but last week she also called him Tyler. This is especially problematic because one of the top things we are trying to work on with him is getting him to respond to his name. I'm sure he is even more confused now than ever. I'm going to call today to try to get someone new. I've waited this long because I didn't want to upset her, but I've learned that I have to stop worrying about hurting people's feelings and just do what is best for my child. 


xo Betsy

Hard Times

It's easy in the midst of daily life to forget that there is any problem. Between doing laundry and cleaning, packing snacks and making sure homework is done, doing crafts and playing with puzzles, and all of the million other things that go along with being a mom, sometimes it's easy to put the things you don't want to think about in the very back of your mind. But then something will happen and you will remember and you can't ignore it anymore and it hits you like a ton of bricks all over again. I'll see a friend who has a child even younger than Fox who is speaking in sentences, when he can't even say "mama". Or a mom at the playground will ask me when he is going to turn one, when he is actually closer to turning two. Or I'll bring him to music class where all the other kids his age are eagerly engaged in the activities and he keeps running for the door. Those are the times I lock myself in the bathroom for a few minutes and have a good cry. Those are the hard times, but there are so many more wonderful times, proud times, happy times, that it makes it easy to pull myself together, move on and wait for the next one of those.

xo Betsy

Telling People

When I first found out that Fox had these issues I didn't want to tell anyone. I didn't want every time people saw him for them to examine him and try to figure out how he was doing. I didn't want him to be labeled. I thought that maybe after a few months of therapies that all the problems would disappear and he would be all caught up and nobody would ever have to know. I guess I was just trying to protect him - from what I'm not even sure. But things aren't getting better. And it's not going away. I realized that I can't get through this alone. I need my friends and the people in my life to know what is going on - to know why sometimes I seem stressed or my mind seems to be somewhere else. And I realized that instead of trying to hide it I should work to educate people and be a voice. Nobody ever thinks something is going to be wrong with their child. Ever. I know I certainly didn't, but hopefully by speaking out and raising awareness I can help other people, while getting a little help of my own along the way.

xo Betsy

What's Next?

Fox is continuing to receive his Early Intervention therapies twice a week, but I am going to try to get it bumped up to three times a week soon. He has an appointment with a neurologist at St. Christopher's at the beginning of June which I am very eager for. Hopefully the developmental pediatricians at CHOP will get him in to be seen in August or September (I sent in our packet in January). His pediatrician said it is very likely he will be diagnosed with autism, but nobody will do it until he is two in September. Of course with something like autism there is such a huge range - some children are incredibly high functioning and others are not, so the waiting and not knowing is definitely the hardest part. Not knowing what the future will hold is difficult to handle, but for right now he and I are just doing the very best we can.

xo Betsy

What's He Like?

Whenever I tell people about some of the issues that are going on with Fox, they always ask me what he is like. He is a happy, mellow little boy who absolutely adores his mommy. There is nothing he would rather do than have me snuggle with him and try to make him laugh. He does make eye contact, but it isn't often for very long. He would rather play alone than with other people, but when he does muster up the courage to join in the group he has a great time. He doesn't wave or blow kisses, but I still know how much he loves me. He loves music, especially reggae. He'll sit in his chair bopping right along to the beat. He adores his sisters and even though he won't play with them much, he loves watching them play with each other. He'll sit in his little corner - his safe place - and just laugh while watching them be crazy with each other. He doesn't say any words and doesn't answer to his name, but he knows my voice. He hates bath time, but loves being clean. He won't touch the grass, but he loves being outside in the sun. He is cautious. While the girls at this age were jumping off the backs of couches and always climbing as high as they could get, he can't get on the couch by himself yet. If we are outside and I put him down he will stay right next to me, which I will say is quite a welcome change from how Quincy & Romy were as toddlers! He is my little love. The boy I wanted so much after having my two precious girls. He is my prince.

xo Betsy

The Beginning

I remember when Fox was 9 months old, telling my mom that he still seemed very babyish to me. That was the only way I could describe it. He had hit the milestones he was supposed to at the time - was rolling over, sitting up unassisted, etc. - but something just wasn't quite right and I couldn't put my finger on exactly what it was. My mom assured me that it was just because I was used to having his sister Romy, who is 21 months older, and was running at 10.5 months. She has always been very physical, even more so than oldest sister Quincy, and perhaps I was just comparing them too much. And he was bald. She said that if he had any hair he would seem older, which made a lot of sense. I put it all out of my mind and just assured myself that she was right. At his 12 month doctor's appointment the doctor went down the checklist of milestones with me... Is he pointing? No. Does he say any words? No. Does he babble? No. Walk? No. She was a little bit concerned but gave me some helpful suggestions of things to try with him and told me to come back in 6 weeks to see how he was doing. I brought him back at the end of October and there had been no progress. She told me during those 6 weeks to touch his foot a million times a day and say "Foot! There's your foot!" - which I did. A ton. She said after a few weeks when I said "Where's your foot?" he should grab for it or raise it or at least look down for it. He didn't. She referred us to Early Intervention to get an evaluation, saying that he may or may not qualify, it was about a 50/50 chance. The Early Intervention team came out at the beginning of December and spent a few hours with him to evaluate. In order to qualify for services you need to have at least a 33% delay in one area or a 25% delay in two areas - the six areas being gross motor skills, fine motor skills, communication, adaptive (self-help), cognitive, social/emotional. He qualified in every. single. area. The therapists told me that his emotional development was at a 5-8 month old level - keep in mind he was 15 months old at the time. Needless to say I was totally and completely devastated. I knew that he had some delays but I had no idea that they were so severe. The next few weeks were a bit of a blur, realizing just exactly what was in store. I took him to get a hearing evaluation with a specialist which came out normal, took him to an autism clinic that told me he was too young to diagnose, got him on a waiting list for a developmental pediatrician (9-12 month wait, how awful is that?!) and got him an appointment with a neurologist (again, 6 month wait). Early Intervention started in January with an occupational therapist coming once a week and a special education teacher coming once a week to start. He did finally start walking at 15.5/16 months and is doing great with that now, but the other areas haven't seen much improvement even with the therapies he has been getting. The journey so far has been scary, sad, isolating, frustrating and just overall stressful. All this waiting for answers is extremely hard. I've started this blog to keep our friends and family posted on how Fox is doing, but also to hopefully help and connect with other people that are on similar journeys.

                                              Fox Edward Winchester James - 15 months

xo Betsy