Fox's Fall Plan

After Fox's IEP meeting last Thursday, we have success - at least temporarily. He will be getting intensive ABA therapy every day as part of an extended day program at school. He will also be receiving speech therapy, occupational therapy and physical therapy 3x a cycle (which is six days) AND, the part I was the most concerned about... he will have a one-on-one aide with him for at least the first six weeks, at which point we will reevaluate. Yay! This eases my mind at least a little bit for right now. I am somewhat worried how he is going to do with having his very first school experience being 5 days a week, for 5+ hours a day... it is an awful lot for a barely 3 year old... but hopefully he will adjust and be fine with it. Looks like I'm going to have to start weaning him off his naps in the next week or so to help him prepare! I'm also hoping with all my heart that nobody will make fun of him for being the kid with the "helper". I know how mean kids can be, and he will be in with 3 - 5 year olds, so I just have to keep telling myself that the teachers are on top of it and he will be fine and protected from any kind of teasing. The thought of someone ever making fun of him for needing extra help kills me inside... my precious little man. Lets just hope this whole transition is all way harder on me than it is on him...

... he's ready!

xo Betsy

Mommy Guilt

When Fox first began showing signs of being delayed and he started the process of being evaluated and diagnosed, I was told by someone very close to me that "if anything is wrong with him it's your fault, because you're the one home with him every day". Nice, right? Way to add to my already mounting mommy guilt. During all of my pregnancies I always did everything by the book... and even went overboard in some respects to make absolute certain I gave my kids the best start. In a word, I was paranoid. I didn't eat deli meat, wouldn't take any medications, was diligent with my prenatal vitamins, switched to sulfate free shampoos and body washes, gave up all caffeine, had no epidural, breastfed for a year... you name it, I did it. Deep down I try to know that it was nothing I did or didn't do, but I can't help but wonder sometimes if there was anything I could have done differently that would have changed anything. Is it because I had to be induced with pitocin? Or because I got him vaccinated? I did eat a slice of turkey one time, maybe that was it? Maybe I hadn't read to him enough? Had he not received enough attention being the 3rd baby? Was that one shower too hot? Or maybe I didn't eat enough salmon or other Omega 3s? Was it the fumes from the occasional manicures I got? If only I hadn't done this or that... then maybe things would be different. It's an awful feeling and a horrible, destructive mental path to go down, though I can't help it sometimes. And then I get slapped with a comment like the one above... getting blame from someone else... and I can't help but wonder if that is what everyone thinks. Not a good feeling. I think as moms we try so hard to give our children every possible advantage, that when something doesn't go according to "plan" we beat ourselves up over it, even though it was out of our hands to begin with. We want answers. We want to know why things went one way or another. And without concrete answers or explanations, that most of the time we will never get, we shoulder the weight of it and blame ourselves. And of course it certainly doesn't help when others are blaming us as well. I've gotten better, and I do tell myself that it was nothing I could've possibly changed, but there is likely always going to be that tiny part of "what if", always tucked away inside.

xo Betsy

School & Evaluations

This month has been full of evaluations and meetings for Fox... 10 to be exact... not counting his daily (and sometimes twice daily) therapies. Lets just say mama has been busy! All of this is to figure out a plan for him for school this fall. It looks like he will be going to the inclusion preschool program in town, which was the goal, but our "big meeting" on August 2nd will determine this for sure. That is when we will formulate a plan to get him the services and help he needs in order to succeed and have a good school experience. The evaluations we have had show that while we have seen some progress, he is still extremely delayed in some areas. I was thinking the other day about how this is my "new normal"... I don't remember any more what the girls were like at almost 3 years old, and I really don't have a firm grasp on what a typical child is like at 3 years old... I'm just so used to Fox and how he is. I think it makes me forget sometimes all the issues that we still have going on with him. I think if I saw him playing with a typical child his own age I would be shocked at the differences. Thankfully, the one issue we really don't have is behavior problems. There are some moments of frustration when he tries to say something and I don't understand him, but hopefully that will get better with time. In general he is so incredibly sweet, cuddly & loving... and, while he does misbehave sometimes (he is a 2 year old boy afterall!), he gets very upset when he realizes he did something wrong... such a sweetheart. Below are the results of his evaluations:

Autism Evaluation (VB-MAPPS): Showed his socialization skills are still at a 0-18 month old level. There was a lot more to this evaluation but the scores I was sent are very difficult to interpret, and I will be asking more about them at the upcoming meeting.

Occupational Therapy: While he has improved skills in some areas, his needs are: below average grasping skills, probable difference range for poor registration & sensory sensitivity and definite difference range (needs the most help) for sensory seeking, low endurance/tone, inattention & distractability.

Physical Therapy: Quick summary with his percentiles...stationary skills: 16%, locomotion skills: 16% and object manipulation: 25%. His overall gross motor skills put him in the 13th percentile, which obviously is way below average. I'm a little surprised he didn't do better in this area, because he actually just qualified out of receiving physical therapy through early intervention.

Speech: This is where he still needs the most work... by far. Fox scored under the 5th percentile for articulation. Ugh. Some of the testing they couldn't even do because he can't make a lot of sounds. This is so frustrating because we have been working with him so hard, for so long in this area, yet he still doesn't talk much at all. The good news is that his receptive language skills (what he understands) were in the average range at 53% - yay! He also scored way above average (4 - 5 year old range!!!) with understanding object use, analogies, colors, quantitative concepts and spatial concepts... and at the 6 year old range (!!!) for being able to identify letters!!!


This meeting on August 2nd is going to be a big one, and will set the stage for his entire coming year. The one thing I'm going to really push for is for him to have an aide with him at all times. He can't talk and can't communicate his needs, so I think it is important for him to have someone there dedicated just to him. I also just can't imagine him riding the bus alone, etc. I even worry about him on the playground... he is a hider, and I have this picture in my head of everyone else being called inside and Fox hiding under the slide and staying out there alone. I don't think it's something they will offer, and I may have to fight a bit for it, but I just don't feel comfortable sending him completely by himself. Mama Bear is coming out on this one, and I'm nervous about it... wish us luck! 

xo Betsy

Normal

Last week I met a woman for the first time and, as most moms do, we started talking about our kids. Over the course of our conversation I mentioned that Fox has autism. Her response was: "Oh, but your other two are normal?" Wow. WOW. Really?! Dictionary.com's definition of normal is: conforming to the standard or the common type; usual; not abnormal; regular; natural. You know what? I don't necessarily want my children to conform to the standard or the common type, or to be "regular". And there is certainly nothing that isn't "natural" about my precious little boy. I know... or at least sincerely HOPE... that she didn't mean it the way that it came out, but boy did it hurt. I was too blown away to say anything other than "uhh, yeah"... but wish that I had the time to come up with something witty to say in response. One of the many things that Fox has taught me is to try to be sensitive in the way that I speak about people... to recognize that people's disabilities or challenges don't define them. I won't refer to him as "autistic", but rather as a child who has autism. Just like a child who has Down Syndrome shouldn't be referred to as a "Downs baby" or anything similar. Everyone is a person first & foremost and these things should not define them. You could tell by the way she said it that she felt as though I must be so thankful to have two "regular" children... but you know what? I wouldn't change a single thing about my little man. Not one. Yes, there are challenges that come with having a child with special needs, but that is what makes him who he is, and he is the absolute PERFECT, not "regular", little boy for me.

xo Betsy

Hyperlexia

I discovered within the past few days that, without being taught at all, Fox knows all the letters in the alphabet. If I point to a letter on a sign, etc. he immediately says the letter name (not always completely clearly, but clear enough to know that he knows what it is). I think this is rather amazing considering he's just 2 years old and nobody has ever worked with him on them or told him their names before... I have no idea how he knows them, he just does. Thinking this was kind of odd, I spoke to one of his therapists who brought up hyperlexia.

From wikipedia.com:
Hyperlexia was initially identified by Silberg and Silberg (1967), who defined it as the precocious ability to read words without prior training in learning to read typically before the age of 5. They indicated that children with hyperlexia have a significantly higher word decoding ability than their reading comprehension levels.
Hyperlexic children are characterized by having average or above average IQs and word-reading ability well above what would be expected given their age. First named and scientifically described in 1967, it can be viewed as a superability in which word recognition ability goes far above expected levels of skill. Some hyperlexics, however, have trouble understanding speech. Some experts believe that most or perhaps all children with hyperlexia lie on the autism spectrum. However, some other experts believe the involvement of autism in hyperlexia is completely dependent on the type of hyperlexia.
Hyperlexic children are often fascinated by letters or numbers. They are extremely good at decoding language and thus often become very early readers. Some hyperlexic children learn to spell long words (such as elephant) before they are two years old and learn to read whole sentences before they turn three. An MRI study of a single child showed that hyperlexia may be the neurological opposite of dyslexia. Whereas dyslexic children usually have poor word decoding abilities but average or above average reading comprehension skills, hyperlexic children excel at word decoding but often have poor reading comprehension abilities.
Despite hyperlexic children's precocious reading ability, they may struggle to communicate. Often, hyperlexic children will have a precocious ability to read but will learn to speak only by rote and heavy repetition, and may also have difficulty learning the rules of language from examples or from trial and error, which may result in social problems. Their language may develop using echolalia, often repeating words and sentences. Often, the child has a large vocabulary and can identify many objects and pictures, but cannot put their language skills to good use. Spontaneous language is lacking and their pragmatic speech is delayed. Hyperlexic children often struggle with Who? What? Where? Why? and How? questions. Between the ages of 4 and 5 years old, many children make great strides in communicating.
The social skills of a child with hyperlexia often lag tremendously. Hyperlexic children often have far less interest in playing with other children than their peers.

All of this describes Fox perfectly. He has a great memory and knows a lot, even more than most children his age, but it's almost impossible for him to communicate by speaking. I'm happy to possibly have some more answers or at least ideas of what is going on with him because the more I know the more I'm able to help. And so hyperlexia is added to the list of words I never knew before precious baby Fox came into my life. Off to research!

xo Betsy

Winter Update

Fox still has therapies 7 times a week but is making very slow progress. The good news is that he is finally saying "mama" and "nana" (for banana) and will actually initiate these words rather than just imitate, which is great! He is so proud of himself when he sees a banana, points and says "nana!"... and I am very proud too! And there is nothing better than walking in the door and *finally* hearing his joyful little voice excitedly shout "mama!" - something I wasn't sure I would ever hear. He doesn't use signs any more, but his therapists think that is ok because we really want him to start using words anyway. Hopefully more words will start coming, but his progress has been extremely slow. I am starting to think about where he will go to school in the fall when he turns 3 and it's very up in the air at this point (which is stressful for me). I'm hoping he will be able to go to the same preschool as Romy, which is an inclusive program and has 1/2 special needs children and 1/2 typical children... but there is a chance he will have to go to a special needs school in town. It all depends on how he does over these next few months. I am fine with him going wherever he needs to, I just hate the not knowing yet where he's going to be in September. Luckily our town has wonderful schools and special needs programs so I know he will be in great hands wherever he ends up. One thing Fox has really taught me is to be able to let go... let go of control and all the plans and just take each day as it comes.

xo Betsy

Hearing

A couple of weeks ago I took Fox to CHOP for another hearing test. He had one last winter, but he screamed pretty much the entire time which made it very difficult for the audiologist to get accurate results. He did much better this time, actually sitting quietly and paying attention... and he passed with no trouble. Of course I'm grateful that he doesn't have hearing problems, but I must say that there was a small part of me that hoped he did. At least then there would be an explanation for why he still isn't saying any words. He was saying "mama" a few weeks ago, but that has stopped and he is back to no words. At least if I knew it was his hearing maybe it could be helped with hearing aids or surgery and I wouldn't be left feeling quite so helpless. It's hard for me to feel like I'm doing everything I possibly can and it still isn't good enough. This isn't something I can just magically fix, and that's hard for me. I just hope that in his own time things will eventually come together and he'll start saying some words... I think he will... it's just scary to worry that maybe it won't ever happen. If I knew he would talk but that it just wouldn't be until he was 4 years old, I would be ok with that... it's just this not knowing that is so, so difficult. But then I remind myself that either way he's my adorable, smart, affectionate, curious, mischievous, best-hugger-in-the-whole-wide-world little boy... the perfect little boy for me, and I love him with all my heart.

xo Betsy

Holland

A friend recently sent me this and I love it so much that I have to share it here. So very true.


Welcome to Holland
by Emily Perl Kingsley


I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel.  It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy.  You buy a bunch of guide books and make your wonderful plans. The Coliseum. Michelangelo's David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy.  All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills.... and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever  go away... because the loss of that dream is a very, very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.




xo Betsy

More Therapies

At Fox's review last week his occupational therapist suggested that he receive a physical therapy evaluation. Along with everything else going on, Fox also isn't physically quite where he should be at two years old. He can't kick a ball well or walk up stairs unassisted, he doesn't squat to play or know how to jump. He has finally started running pretty well (and climbing!), but there is a lot more that needs to be worked on. Today he had his evaluation and he did indeed qualify for services. The therapist said he is probably comparable to a 14-16 month old in terms of his physical abilities. I'm happy that he qualified for services, but at the same time it creates its own challenges. It means probably two more hours a week of therapies, which is a lot on him and a lot on me. As it is right now we have teachers coming for him 7 times a week, and with PT added it could go up to 9. It's hard having someone here every. single. morning. There is no day we can just hang around in pajamas or go to the playground right after breakfast. Every morning is taken up with therapies and now a lot of afternoons will be as well. I'm thankful that the girls are back in school because it gives them something fun to do while I have to be home with Fox. This summer was hard on them because we just weren't able to get out and do much since I always had to be here for therapies. I'm lucky that they are such wonderful little girls and never once complained, but I know it's not always easy for them. Hopefully soon he'll start making a ton of wonderful progress and we won't need his therapies to be quite so intensive, but for right now, as hard as it is, I'm just so glad that the services are available for my special little man.

xo Betsy

Two!

Two years ago today my precious little boy was born. He really is my little miracle, the boy that I never thought I would have. My pregnancy was so full of surprises and scares, completely unlike the other two, that I will never for a single moment take for granted having my precious little man. At the first doctor's appointment they couldn't find a baby, just an empty sac... they said to come back in a few days and they would check again... talk about the longest few days ever! When I finally got back in for an appointment, there he was with his little heart beating away. Then at the 20 week ultrasound they found a spot on his heart that needed to be evaluated with a level 2 ultrasound... they said it increased his risk of Down's Syndrome but that it was probably nothing to worry about (hard for this mom). The level 2 ultrasound didn't show any additional markers for Down's Syndrome, but they still couldn't figure out what the spot on his heart was so they sent me for a fetal echocardiogram. Long story short, his heart is completely fine now. Then I started getting intense early contractions and wound up in the hospital multiple times, sure he was going to come early. However, he ended up being a week late. I had to be induced, and while the labor was short, I must say that being induced made things much more painful for this no epidural gal! Finally he was born, with the cord around his neck, but fine. At four days old he was in the ER, but again, nothing to worry about. From day one, little baby Fox has enjoyed keeping me on my toes and I'm sure it's not over yet! His second birthday is such a celebration, but it's also difficult for me. When we first started this journey nine months ago, I thought for sure that by the time he was two he would be caught up... that he would be talking and singing and acting like a typical toddler, but unfortunately he's not. He still doesn't talk and doesn't play like most two year olds do... he can't do puzzles on his own or pretend play much, he doesn't respond to his name (but he does understand "no"!) or know the difference between his sisters... he doesn't follow instructions such as "go get me your shoes" or "where's the...?" or sing songs. The hardest part is seeing other children his age doing all these things, or looking back at pictures of Quincy & Romy when they just turned two and seeing how different they were. It's easy day to day to not realize exactly how different Fox is, but then something will happen like a friend will post a video of her 1 year old singing the alphabet and it will hit me suddenly. It's hard and I get sad, but then all it takes is one great big Fox hug (if you've ever gotten one you know what I'm talking about!) for me to realize that none of that matters... I have the perfect little boy for me... and it's time to celebrate because today he's TWO!

xo Betsy

Changes

A lot of children with autism have a difficult time with change, and change is something there has been a lot of around here lately. The kids and I moved to an apartment in town a few weeks ago and I was really worried about how Fox would handle the transition of having a new home, new room, new schedule, etc., but I have to say that he has done wonderfully! He's gotten to be very curious and has really enjoyed exploring this new place, checking out his new toys and figuring out where everything is and belongs. When the kids stay here at night they are all in the same room, and I didn't know how he would handle that since he is used to having his own quiet space, but he actually seems to really love having his sisters with him! Granted he doesn't fall asleep as early as he usually does, but he is so good and just enjoys sitting in his crib watching the girls read books and whisper to each other. Through all this change I'm so glad that he has his sisters as constants... always there with him. I'm incredibly thankful that he is a pretty easygoing little boy and has adapted so well to so much.

xo Betsy

Gestures

I'm happy to say that since the last time I wrote Fox has grown leaps and bounds. He is really starting to get the hang of sign language, which is so wonderful! He's finally able to communicate a little bit which has relieved a lot of his frustration. He now, pretty consistently, signs "more", "open", "no", "I did it!" and "all done". We're working on a few others... "help", "milk", etc. and I'm sure he will get them soon. He has also done a lot more with gesturing, which is huge for him. Yesterday he and Quincy were playing tag and when he wanted her to chase him he would point to her, grunt and then pat himself... as if to say "come and get me!"... so cute. He's also started pointing to some body parts (hair, tummy, nose & foot), waving, clapping, doing high-five, "how big", peekaboo, etc. SO MUCH PROGRESS! Lately he also has begun to make some sounds... not babbling, but whenever you hand him something he makes a little two-syllable noise to say "thank you". I'm so thrilled with everything he has accomplished over the past few weeks and am so eager to see what else he begins doing soon. I really think having his therapies go up to six times a week has done wonders for him and I'm so grateful for Early Intervention for providing them. There are still times that are hard... the other day at the pool I saw him playing next to a little boy who seemed to be developmentally pretty similar, although the other little boy was babbling and saying some words, which Fox doesn't... and when I asked the mom how old he was she said 13 months. Of course then she asked me about Fox and I said 22 months, which I could tell surprised her. Those are difficult times... but instead of focusing on them I just try to remember how incredibly far he has come, how hard he is working and how very proud of him I am!

xo Betsy

Words

Last week I had a meeting with Fox's Early Intervention coordinator to discuss adding the speech services that CHOP recommended. Their report suggested 3 or 4 hours of speech services a week, but Early Intervention would only agree to 2... and that was only after I really pressed them for it. At this point I feel as though speech is the top area he needs help with, as he still doesn't babble at all, so it's a little frustrating to only be getting 2 hours a week. I'm alright with it for now, but if after a while I feel it isn't enough I will definitely do everything I can to get him more. Lately people have asked me what the hardest part about Fox's diagnosis has been and what I'm the most worried about. The answer is easy... I'm worried that he may never talk. That he'll never be able to say "I'm Fox". That he'll never call me "Mommy". That I'll never hear him say "I love you". It's overwhelming to even start to think about, so I try not to. I'm doing the very best I can to not look too far into the future... I know I have to just cherish every day and enjoy every moment... but some days it's easier said than done.

xo Betsy

Diagnosis

Today was a big day. A day I will never forget. The day I learned that Fox has autism. I went for his follow-up appointment today and heard the words that I didn't want to hear. I thought I had prepared myself, but as I sat there listening to them tell me about the results of his evaluation, all I could think was "I can't believe it's really true". I tried so hard to listen to everything they were saying, but as soon as they got past the diagnosis I had a hard time concentrating. I kept asking questions and they assured me they were going to give me papers with everything written down to go over later - thank goodness. They went over the different kinds of disorders on the autism spectrum...  PDD-NOS & Aspergers (which are on the mild side of the spectrum)...  Classic Autism, Rett's Disorder & Childhood Disintegrative Disorder (which are on the more severe end of the spectrum). They officially diagnosed him with mild to moderate classic autism. My mind is spinning with everything that happens from here... blood tests, more evaluations, increased services, etc. They want to add speech therapy 3-4 times a week and ABA once or twice a week, which would put us up to 9-10 hours a week of services. It's going to be difficult to have so many therapies every week for him... someone at the house every morning and every afternoon gets a bit exhausting at times... but I'm just so thankful that all of this help is available to him. And as upset as I am to have heard the news today, I am relieved to finally have a diagnosis and not have to wonder any more. It's going to be a challenging road ahead, no question, but I have some wonderful people in my life and I know that is what is going to carry me (& Fox) through.

xo Betsy

CHOP, Visit One

Last week I took Fox to CHOP for his big evaluation with the developmental pediatrician. We got there around 8am and walked into a room with five people all sitting waiting for us... a little intense. The team evaluated him for over two hours... watching him play and interact, trying to get him to do little things, etc. At times some of them went behind a two-way mirror to observe and give him a little break from so many people, which was helpful. Overall I feel like he did a really great job... he was in a good mood, which I was very thankful for, and didn't seem to mind being in a new place. The team said that they don't want to see kids on their best days or their worst days... they just want to see how they usually are, and I think we accomplished that. At the end of the evaluation I was told that I had to come back in a week for the findings and recommendations... that they had to have time to write their report, etc. The thought of waiting another week for some news was about more than I could take and I asked them to please at least give me some indication of what their initial thoughts were. The developmental pediatrician told me that obviously he has a huge speech delay... no babbling, no words, etc... but even if we were to take that delay away, there are still other concerns. I knew this... I've known this for 6 months... but somehow hearing an expert at CHOP say it made it very real. This has definitely been a long week... knowing a little information but not everything... just waiting to go back.  So, Thursday afternoon is the big meeting and likely a diagnosis... finally. While I'm so nervous about what I may hear, and probably won't sleep at all the next two nights, I also know that with it will hopefully come lots of information, resources and help.

xo Betsy

Very Good Week

I have been told many times that there will come a point with Fox where everything will just seem to come together. I've been waiting and waiting for him to start making some progress and this week has just been fantastic. His wonderful therapists have started coming four times a week and I really think that has made a huge difference. He has started signing "more" when he wants something, which is huge. It's so nice to finally be able to communicate him a little bit and have him be able to express to me what he wants. He is also doing great with his sensory issues... he will walk on mulch (if I put him there... he still won't go onto it by himself), has started taking a bath without screaming and actually enjoys playing in the sandbox outside! He is working so hard and I'm just so proud of everything he has accomplished. The other great news is that CHOP finally called and had a cancellation for an appointment with a developmental pediatrician for THIS THURSDAY at 8am! I wasn't expecting to get a call until August or September, so I'm thrilled to get him in for his evaluation so soon. Fingers crossed that it goes well and that I can finally get some answers.

xo Betsy

Waves

Last week I went to a first birthday party for my friend's son, who is just the cutest little boy. I was having such a fun time and wasn't thinking at all about what is going on with Fox, when all of a sudden I saw the birthday boy wave goodbye to everyone. Of course I was thrilled for him and for his family that he is able to do that already (plus, it was adorable!), but inside all I could think was... Fox is 8 months older and still doesn't know how to wave. I quietly excused myself to the bathroom, let a few tears run down my face, then pulled myself together and went back down to the party. I know that things like this will happen from time to time and I've gotten pretty good about allowing myself a few minutes to be upset and then moving on. Well, wouldn't you know, a few days later when Fox's occupational therapist was leaving, he waved goodbye to her! I must have looked like a kid on Christmas, jumping up and down, clapping and praising my precious little boy. I really needed that. It's so easy to let all the worrying consume you and sometimes you just need that little thing to give you renewed faith. He has waved every day since, and every day since I have been just as excited and proud as the first time.

xo Betsy

Baby Steps

Today when I was waiting to pick the girls up from school I let Fox out of his stroller to run around a little bit and enjoy the beautiful weather. Normally he sticks very close to me and, of course, doesn't go off the sidewalk. I've actually sort of enjoyed this because it's easy to keep tabs on him and I don't have to chase him too much. Well, today he took off for the grass, paused as he got just to the edge of it, smiled and ran right onto it - amazing! He ran all over the field and didn't seem bothered by it one bit.  I am so proud of my little man! I know that he has really been struggling with walking on different textures and I'm just so happy that he managed to work through something that made him uncomfortable. If you had seen him today you never would have known that it was something he was scared to do just days ago - I couldn't keep him off it. He still won't go near the mulch, but we're taking baby steps here and he is doing great!

xo Betsy

Little Mommies

Fox is so lucky to have two big sisters that absolutely adore him. Quincy especially loves to teach him things and be a little mommy. I have not told the girls anything that is going on with him, they are so little and really don't need to know, but I can tell that Quincy has picked up on the fact that he needs a little extra help. She knows that Fox has a "teacher" that comes a few times a week and she has asked why nobody like that ever came when Romy was little. I just told her that the teacher comes to help Fox learn, which she accepted. She definitely senses that sometimes he needs a little extra attention and is always eager to get down on the floor with him and play teacher. She is such a good big sister and will be such a wonderful mommy someday! Below is a video of Quincy teaching Fox how to pick up - she is so patient and sweet with him and he just absolutely loves her. My favorite part is the little happy dance that Fox does when he is proud of himself. Enjoy! (Oh, and make sure to  press pause on the playlist at the bottom of the page so that you can hear the audio in the video - and turn it back on when you are done!)

xo Betsy

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