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