End of the Year Progress Report

It’s been a little while since my last post. The holidays this time of year have a way of letting time get away from you. After we finished up with Halloween, it seemed it was time to prepare for Thanksgiving. After recovering from Thanksgiving, it was already time to get set for Christmas.

With the end of the year quickly approaching, it marks a huge transition for Bella. Since she’ll be turning three in February, she’ll begin attending classes for the 3-5 program right after the holiday break. This will be a huge change, not only for her, but for us as well. While we are very excited for her to begin this new chapter in her life, we are also a little apprehensive as to how she’ll adjust to such a huge change in her schedule and routine. She’ll be going from two half days a week to five full days. She’ll be getting five days of speech as well as an increase in her physical and occupational therapies. She’s made such progress with her current schedule that she can only go to improve when she begins to attend more days per week.

Unfortunately, Bella tends to regress when on extended breaks from her routine. With the two week break coming up, we’re worried that it may take her a little longer than normal to adjust to going back to school and being in a brand new classroom, with new teachers and new classmates.

While, like always, Bella continues to improve, it’s slow going on most fronts. Bella still doesn't use many words on her own and still mimics and repeats a lot of what she says. She has, however, excelled at counting and can now count to fifty, mostly on her own. She’s mastered zipping her own coat, brushing her teeth (on her own) and, after getting her new shoes with Velcro straps, can put on her own shoes! We've managed to work with her occupational therapist in getting her to stop running so much, so outside ventures have been much safer and a lot more fun.

We've also managed to implement a way for her to communicate her needs and wants with us. It used to be that she would just cry (out of frustration) as we continued to guess what she wanted, getting it wrong, most of the time. Now, she’ll grab our hand and lead us right to what she wants. It’s limited the amount of frustration we all feel and in turn has reduced the amount of meltdowns we've experienced.

We’re very happy with her overall improvement but still struggle with a couple of issues that none of her therapies seem to be able to help. Sleeping and eating are two issues that just never seem to improve. The medication she was put on for her sleep issues seems to have no effect anymore and she’s gone from being, what we’d call a picky eater, to downright refusing to eat anything that isn't the consistency of baby food. Unfortunately, a growing, almost three year old, can not live on yogurt and mashed potatoes. She’s on a strict daily regimen of vitamins and supplements to keep her healthy until we can figure all that out. As for the sleeping problem; well, we’re still working on that.

Overall, we’re very happy with the progress that Bella has made this year. As the new year starts, and so begins her new program, we have high hopes that even more progress will be made. Slow moving or not, progress is progress. Working closely with her teachers and therapist, we hope to integrate what she’s doing at school, to what we’re doing at home.

Bella is growing up fast and she’s turning into a truly beautiful, loving child. With so many people around who love and care for her, I have no concerns that she’s getting the best help and care that she can be getting right now.

She impresses us more and more everyday. 

My Confessions #4

This is a picture of a billboard that P.E.T.A put up in New Jersey. One of the top 14 states with autism diagnosis in the country. Needless to say, it caused some controversy.

Does this bother me? Yes. It does. It bothers me because P.E.T.A is using a hot button issue like autism to push their own agenda by spreading false information. The people of P.E.T.A read ONE report that said cutting casein from an autistic child’s diet can help relieve some of the issues caused by autism (while this has helped some children, this too isn't a proven fact). They then used this information to launch a billboard campaign in New Jersey saying that cow’s milk causes autism. They ignore the fact that casein is found in many foods, not just milk and some of the those foods are considered vegan, and that no food has ever been proven to cause autism.

I've seen and read some insane facts about P.E.T.A over the years and it’s always shocked me how they twist facts to suit their needs. The most recent of their eye-roll inducing “protests” includes releasing a parody game about Pokémon to voice their disgust at the way Pokémon (computerized, fake animals by the way) are kept in balls and used for human entertainment and fighting. Since Pokémon has been around for the better part of 15 years, I don’t really understand why they now have an issue it. They call it "virtual animal abuse". Speaking of computerized animals. They've also begun protesting Call of Duty, since players are expected to kill Nazi attack dogs in the game. P.E.T.A suggests, petting the dogs and playing Frisbee with them instead. May I remind you again, that these are not REAL animals and if ever someone was accosted by a rabid Nazi attack dog, I’m wondering how you’d pet it if it bit off your hands. They, however, don't seem to have an issue with the fact that you kill humans in the game as well. Interesting fact: P.E.T.A euthanized nearly 95% of the adoptable dogs and cats in it’s care in 2011, using the excuse that the cost of care is too high...yet they spend millions and millions of dollars ($34.5 mil budget) on billboards of naked celebrities and campaigns that tell children if their father likes to fish, then he’s probably going to kill your dog.

Many parents, myself included, never gave our children milk products. Most of our kids began showing signs of autism, before they were weaned off breast milk or formula. In my case, we all have a lactose intolerance and our children were all on soy milk or almond milk when they did begin drinking milk.

This is also something that has begun bothering me a lot. I know that with every hot topic issue there is a period of time where the backlash starts. I can’t really explain why it happens, but it does. It happened with A.D.H.D and it happened with P.P.D so it was only a matter of time until it happened with autism too. It gets on my nerves sometimes though when someone asks you why your child is doing something, and you tell them only to have them say that “you’re using autism as an excuse”. Trust me, I’d much rather say “well, she’s kind of being a brat today”...at least then it would be a normal reason as to why she’s doing what she’s doing. But guess what, sometimes, her behaviors are a direct result of her issues with autism. Sometimes she’ll get overwhelmed at the grocery store or on the playground and she does what we call ‘a protest’, where she’ll lay on the floor/ground with her hands over her ears. Why? It comforts her. She’s not bothering anyone and even when she does yell or scream, it’s not directed towards anyone. There are some who have snide remarks to say and just have to comment. Sometimes I’ll get mad and tell them “she’s not being bad, she’s just overwhelmed” or I’ll explain that she’s autistic and can’t help it sometimes. Then, I’m accused of making excuses for her behavior.

It’s not just annoying, it shows that sometimes people really do need to show some compassion. I get that there are probably people out there that might play the “autism card”, but sometimes you have to realize that some autistic children do have issues with things that you’re not going to understand. Telling a parent that they are “letting their kid” act that way is insulting. Most of us have no control over the reactions our children are going to have in certain situations and the only thing we can do sometimes is to try our best to comfort them and make them feel less overwhelmed. Telling me to “leave her at home until she learns to act right” just makes me want to punch you. I've been witness to many, MANY children who have full blown temper tantrums when they don’t get the toy they want, or they’ll throw things or actually hit their parents when they don’t get their way. For them, it’s a logic of “kids just being kids”...so why is it that I, as the mother of an autistic child, should “keep my kid at home?”

Another issues I've been running into a lot lately are other parents that almost seem to be afraid that their child will miraculously contract autism from my kid. Now, we all know that autism isn't contagious, but that hasn't stopped many reputable colleges and foundations from printing stories that claim that kids who live near a child with autism have a higher percent chance of getting a diagnosis of autism themselves. What they fail to publish is the fact that nearly all of those kids get their diagnosis taken back after more testing and evaluations. See, what happens is, kids that spend time with a child with autism will sometimes mimic certain behaviors, all kids do this. The parents of these kids, having also been around a child with autism, will begin to see every thing their child does as a sign of autism. Call it paranoia or just being a little too sensitive. They take their kids in for an evaluation and at first they show a few signs that they've begun mimicking  but after more testing, it's shown that the child is fine.

I've had people literally move to another area of the playground after finding out that Bella has autism, be that from casual conversation or from just observing some of the typical “autistic like behaviors” that Bella does daily. It’s kind of obvious sometimes. I've had a few people flat out tell me that they’d rather not have their kids around Bella because they didn't want their child to “pick up any bad behaviors”.

It is heartbreaking sometimes to hear these things and to know that Bella is going to have to deal with people like this her whole life. People with autism are incapable of judging others and are unable to lie for the most part, sometimes to a fault. I sometimes imagine what the world would be like if there were more people that were “afflicted” with those same “ailments” (if you can really call them that).

All I can do right now, is be thankful that Bella doesn't know the difference and hope that as she grows, more people will be willing to get to know her, instead of her condition. As a parent, that’s the best I can really hope for and with this blog, I hope to let more people know that even a little compassion can go a long, long way.

Happiness and Halloween

Since Halloween is quickly approaching, I've been asked a lot recently how Bella handles it. The answer to that question is, I don’t know. Last year, she was sick so she pretty much slept in the car the whole time Rayne and I were trick-or-treating. This year, Rayne is beyond excited to get dressed up and go out, and she’s made it a point to tell me that she really wants her sister to go with her. She’s even picked out matching outfits for them to wear (she wants to be Dora, as a cat, from the movie and she wants Bella to be Boots, as a chicken). 

Unfortunately, there are numerous issues that can come up for us. We want more than anything to allow Bella to join in our beloved traditions during the holidays. For children, there is no greater night than Halloween. I mean, what can be better to a child than dressing up like their favorite superhero or fairy princess and getting free candy?

So, what am I so worried about? Well, there are a few things.

Sensory Overload

There’s spooky Halloween music, hyper, running, yelling children, large groups of people dressed as goblins and witches and zombies and vampires, adults that go all out and decorate their houses like something straight out of a horror movie, people that enjoy jumping out from behind bushes with a ghost face mask on in an attempt to scare the daylights out of you. For typical kids it’s all fun, but for someone like Bella, any one of those things can tip her already fragile senses into overload.

No Fear!

Autistic children have no concept of danger or fear. We've had issues with Bella (as many parents have had with their own kids) of running. When something catches their eye, be it a noise, an object or even something glimmering in the distance, they’ll stop at nothing to get to it. Running into the street, darting in front of a car, running off to join another group or walking up to any adult they see are all serious issues to keep in mind.

Or...Too Much Fear

Some kids are just the opposite and have high levels of anxiety and fear. They can see something that doesn't seem to effect them at all, but then have nightmares about it for weeks later on. Walking up to a strangers house or confronting a total stranger at all is just not something that some can handle.

Strangers and Other People

While you encounter a lot of strangers while out trick-or-treating, you can come into contact with some that aren't so friendly. The ones standing on their porches, shivering just to hand out candy to all the cute little kids, are not the ones I’m talking about. I’m talking about the ones that like to spray shaving cream at you or cover you in fake blood as you walk by. For children who already have an anxiety about social situations and strangers, having something negative happen can hinder them from really enjoying any kind of social interactions in the future. These kinds of impressions last a long time to someone with autism.

Diet Restrictions

There are a lot of parents out there with autistic children who have diet restrictions that mean their kids can’t eat candy (or high sugar treats). It might not make sense to some, but even though some kids might not be able to enjoy the spoils of their night out, we, as their parents, still want them to be able to enjoy the activity and the tradition of Halloween. A solution for this is to get home and “trade” the candy for a new toy that you know your child will love! Also, if it’s just too much of a good thing that adversely effects your child, pull out a portioned amount they can have everyday, every other day or only as a special treat during the week.

So, even though I don’t know all the answers, I have come up with a few ways to help Bella enjoy Halloween anyway.

Start Preparing Early

We started about a month ago, reading stories about Halloween and watching Halloween themed children’s movies. We've gone over, again and again, what Halloween means (in terms of children and trick-or-treating that is). We've made sure to have her try on costumes to make sure that she agrees with the material. Most costumes are made with an itchy material that she refuses to wear and masks are totally out of the question. Autistic children don’t really understand the concept of “make believe” and “pretend” so the whole concept of dressing up as someone or something else is not a priority to her. What we’ll most likely end up doing is dressing her in a warm Halloween themed outfit that she won’t mind wearing but still keeps her in the spirit of Halloween.

Outside Safety

Now, I don’t have to list all the rules for being safe outside, because parents already know them, but here are a few tips to make sure everyone stays safe while out at night trick-or-treating. First, if you have a runner like I do, consider using a child harness. When it gets dark, your child can dart off and be lost in the crowds in a heartbeat. People might make snide remarks or point and laugh, but the way I've always seen it is that my child's safety is far more important than the opinions of strangers. If you’d rather not and you don’t have to worry too much about your child running, use glow sticks. They are fun to wear and won’t really seem out of place on Halloween night. Always remember to use a “name book” or a “pocket ID card” as well. Worst case scenario, your child does stray and get lost, if someone were to run into them, they can get their name and an emergency number to call. (especially good to use for non-verbal children)

Plan Your Route

Take some time before you go out to plan your route. If you can, plan your route around friends houses and ask them if you can stop in for some apple cider or something. It will give your child a few minutes to regroup and relax before heading back out. Also, keep it simple. Maybe hit a few blocks and call it a night. Too long and your child might start to get a little too anxious. Also, see if a family member wouldn't mind driving down the roads with you so that you’ll always have a warm place to retreat to in case your child starts to meltdown or beings stimming a lot.

Use a Wagon

If you’re child has muscular issues or skeletal problems (Bella has issues with her lower legs), try using a wagon. The less stress on your child, the less stress the whole night will be.

Stay Home

If things just don’t seem to be working in favor of trick-or-treating, just consider staying home. There are lots of things you can do at home with your child that will still help them enjoy Halloween without putting them through the stress and anxiety of going out. If you have glue sticks and construction paper, you’re already in store for a good time. Consider handing out candy if your child doesn't mind the social interaction of it. You can split the work if you have other kids that want to go out. Ask a friend or relative if your child can join them or have the hubby take the other kids out while you stay home and create your own Halloween traditions. When the hubby and kids come back, do something as a family to celebrate Halloween together. Whatever you do, don’t force them to participate. Halloween is only fun if everyone is enjoying themselves. I love Halloween and I’ll admit that I’ll be a little bummed if Bella just isn't into it, but what is the fun of celebrating a holiday if the whole family isn't doing something they enjoy? Forcing them to wear an uncomfortable costume and interacting with social situations that scare them or cause them anxiety isn't going to be fun for anyone involved.

Decorate to Celebrate

If you know ahead of time that going out isn't going to work, one of the easiest ways to celebrate Halloween is to decorate the inside and outside of your home. Really go all out and try to do as many things as you can that your child can help with. Homemade decorations are always easy and fun and your child will love to walk around the house each day seeing things that they've created.

Nowhere is it written in stone that you have to follow the common traditions of the holidays. So, use the holidays as a time to create new, special traditions with your family. Last Easter, we realized that the established and well known “Easter Egg Hunt” just wasn't going to work for our child... so, instead, we colored and decorated eggs and then hid them in the woods near our house so the Easter Bunny could find them. Rayne got to do the more traditional Easter egg hunt, but also really loved our new family tradition of hiding the eggs with her sister. Everyone was happy AND we created a new tradition our family could enjoy celebrating together.

Have a wonderful Halloween!

Arts and Crafts – 8 great ideas for children with autism (and typical kids too!)

Some of the only times I can get Bella to sit still with me is when we do crafts together. These are some easy, cheap crafts I've come across over the last year or so that are not only easy and fun, but help with common issues in autistic children like fine motor skills and sensory issues. These crafts can be done with neuro-typical siblings as well. (Or, if you don’t have an autistic child, these crafts are still fun to do together).

#1. Sensory Glitter Bottle
What you’ll need:
Soda bottle or other clear empty bottle
Food coloring or colored glitter
Baby oil
Little trinkets or small objects

One of the easiest craft ideas you can do with a child who has autism is a simple “sensory glitter bottle”. Fill the bottle 3/4’s of the way up with water and fill the rest with baby oil. Leave some space for other floating objects like colored bouncy balls, letter tiles or small gumball prizes. Add glitter or food coloring and glue the top on.

These are two "sensory bottles" that Bella and I made together.

#2. Edible Finger Paint
What you’ll need:
Vanilla pudding (single serving cups work great)
Food coloring

Not only is this a safe, non-toxic way to get them painting, it helps with hand eye coordination and color identification. All you do is mix vanilla pudding with a few drops of food coloring. Ta-Da, instant finger paint that’s also edible. Perfect for kids, like mine, who tend to want to taste and mouth everything they touch.

Click here for more edible finger paint recipes.

#3 Paint With Ice
What you’ll need:
Tempera Paint
Ice Tray
Tin Foil
Craft Sticks

Another easy-peasy painting trick, (that’s a little less edible) is to mix liquid tempera paint with water, pour it into an ice tray and stick a Popsicle stick in it. It will freeze and the effect you can get from painting with them as they melt is pretty neat. An easy way to keep the sticks standing while it freezes is to put some tin foil on the top and poke the sticks through it.

Picture is from http://www.education.com

#4 Crayon Resists
What you’ll need:
Poster Board or Paper
Crayons
Paint

Have your little artist draw a picture with light colored crayons, pressing down hard. After they are done, paint over the picture with black or dark paint. Where they drew their picture will resist the paint making for a pretty cool piece of art.

Click here for full instructions and more examples

#5 Matching Games
What you’ll need:
Anything you can use to creating pairs of matching objects.
Use the lids of baby food jars, two Popsicle sticks, index cards etc. Draw matching objects on pairs of cards for your child to color in. Then you can play with them. Flip them all over and take turns trying to match the pairs.

Magnetic refrigerator magnets stick right to baby food jar lids and make for easy matching games. Also, click here for free printables for matching games.

#6 Buried Treasure
What you’ll need:
A sandbox with sand (or sand in a Tupperware tub)
Some of your child's favorite small toys

Simple… bury the toys in the sand and then help your child dig for the “buried treasure”. If your child has a habit of eating the sand, you can scale this down and use “glass gems”. They are fairly cheap at most dollar stores. Pour all the gems into a Tupperware container and “bury” small things like dice or small toys. Bella enjoys this version because the gems feel nice on her hands and it’s smaller so it’s not so overwhelming. (Less of a distraction then a giant sandbox to play with)

#7 Fine motor skills games
What you’ll need:
Depending on which activity you want to do…

Put uncooked spaghetti noodles in a wad of play dough to keep it standing. Hand your child a pile of Cheerios and help them slide the Cheerios onto the noodle.

OR

Take a bottle filled with water, a spoon and some marbles, set them up on a table and guide your child to scoop up the marble with the spoon, carefully “pouring” it into the opening of the bottle. These two activities can help greatly with fine motor skills and hand eye coordination. The Cheerios game is also fun because afterwards, your child can snack on the Cheerios.

#8 Edible Necklaces
What you’ll need:
Red Vines and Fruit Loops
This is one of Bella’s favorites. You get to make beautiful edible jewelry with your child by stringing fruit loops on a piece of red vine licorice. Then, have an even grander time eating them! A great project to help with hand eye coordination and fine motor skills.

Take into consideration the skill level of your child. Doing these activities together or with siblings is a great way to get everyone involved. While most will just see them as fun things to do, each of these activities can help improve fine motor skills, hand eye coordination, can help with sensory issues (touch, taste and texture) and can help engage your child, improving eye contact and personal bonding. As always, supervision is always required, especially for those who have children who like to mouth objects or don’t always follow safety rules.

Have fun!!!

It's Officially Official.

On October 5th, we attended our much anticipated appointment at the Kirch Developmental Services Center at Strong Memorial Hospital. This appointment came after nearly 10 months of waiting, so I made sure I came armed with my big two inch three ring binder that contains every piece of paper I've ever received regarding Bella.

The wait wasn't long but I could notice Bella getting anxious. The waiting room was full of other kids, some with the same issues as her, others that didn't but were still being quite loud. Getting her blood pressure taken wasn't something I’d enjoy doing again anytime soon. The lady doing it didn't seem to have much patience, especially for someone who works with children. Bella’s blood pressure was quite high, but it was obviously because she was so worked up. Once we got into the room where the tests would commence, the toys distracted her and she calmed down.

I wish that I could write the names of the two amazing doctors that evaluated her, but I forgot to ask for their permission and for the sake of privacy, I’ll simply refer to them as Dr. M(ale) and Dr. F(emale).

Dr. F came in first. She did all the basic tests and took all our information. She asked a lot of questions. She didn't get mad or irritated when Bella kept flipping the light switch on and off, or even when she began drumming on her keyboard, which accidentally crashed her computer for about 15 minutes. I felt awful, but she assured me that it wasn't even the worst thing that’s happened to her.

Dr. M came in, towering well above Bella which seemed to make her a little nervous. He got down on the floor with her (all 6’ 3’’ of him) so she’d feel more comfortable. Together the doctors spent the next two hours evaluating every aspect of her development and assessing her skill set. There were many things that Bella didn't cooperate on, but she showed a great interest in music and numbers.

Now, even though we’d already been given a preliminary diagnosis, hearing them tell me her official one was still hard. I guess there’d always been this tiny voice in the back of my head that keeps saying “maybe she doesn't have autism, maybe it’s something else”… something that, as her mother, I’d always held on to.

They said “Your daughter has moderate autism with sensory integration dysfunction.” While I wasn't surprised by the fact that she has autism, I was a little shocked to hear the word “moderate”. I always thought that she was high functioning and I was told that while she is excellent in most areas, there are three basic areas they focus on to determine the level of autism a child has. Speech, social interaction and repetitive behavior. Bella is pretty extreme in all three.

We were given some good news though. Dr. F was surprised at how affectionate Bella was. She said that most autistic children avoid affection at all costs. To see Bella come to me during her testing to “check-in”, give me hugs and even a kiss or two, was something she said she’d never seen before. Dr. M told me that the percentage of autistic children who show affection is rated somewhere around 5% (much lower than the 30% I read about). The fact that Bella shows us the affection that she does, really does make the whole situation easier for us to deal with. I just think that it would be much harder for us if she didn't.

We were also told that because we got her into classes so early on, we gave her a great advantage. To know that we’re doing everything we can to help her right now was a great thing to hear and it made me feel a lot better.

So, even though she now has this official diagnosis, I realize that she’s still the same little girl she was before this appointment. Now, we just know how to help her a little bit better.

Now, we can begin the next part of this journey. Finding her classes, therapies and programs that are more suited to her specific needs, with teachers that are trained to work with autistic children of her degree.

As always, we’re just prepared to expect the unexpected.

It Takes All Kinds

The big question of the week, that seems to be coming up a lot, is “how do people react when they find out your daughter has autism”? Well, I've thought about it and I can pretty much narrow most people down into just a few groups. While there are some great people out there, I have to admit that some people can just be downright annoying. I’m sorry...but it’s true.

• “The Diamonds”– these people here are hard to find, but when you do, you hold them tight. They are the ones that want to help you, out of the goodness of their hearts. Be it a ear to vent to, a shoulder to cry on or a mouth to sit back and drink some wine with. It doesn't matter. They might not have any answers for you, but they are there when you need someone.

• “The Fixers” -this group can consist of family, friends or total strangers and while they all mean well, they tend to try to “fix” your child with strange “cures” they read about on the internet, advice that doesn't really apply to you and old wives tales that have been debunked over and over again. As I said, most mean well, so they’re not bad people, but sometimes it can be rather annoying. 

• “The McCarthy Followers” – everything this group says starts with “Well, Jenny McCarthy said...” and that is where I usually start to tune them out. This woman’s son, as doctors have proven, never had autism. The information that she spreads around regarding autism, vaccinations and awareness does nothing but make me shake my head. Her vaccine theories have been disproven again and again, yet people still choose to believe it. I’m sorry, but I’d rather not take medical advice from a person who’s life accomplishment was being naked in a magazine. Thank you. 

• “The Disputers” – while in my experience I've only run into these types within the family, they can be found pretty much everywhere. They are the ones that like to tell you that “every kid does that” and “she’s probably just stubborn”. I don’t know why but it’s like they are in denial about what is going on and just refuse to believe it. I can understand that to an extent, but it’s time to just accept it and move on. Still, they like to present you with print outs that dispute that autism even exists sometimes. 

• “The Experts”– these types differ from the “fixers” in that instead of offering advice (that you might not agree with) they flat out try to tell you what to do. “If you don’t do (this) than you’re really not trying to help her” or “this can cure autism, you have to do it”. It’s said with such dedication that it’s almost like they’re telling you that if you don’t follow their advice, then you’re a bad parent who’s just not doing the right things. If you were listening to them, you’re kid would be cured by now!

• “The Connector” – they like to watch what your child does, then say things like “Well, my kid does that too” or “that seems like a normal thing for a three year old.” These people, usually, don’t have a child with autism, or kids at all and watch your kid for about three seconds. 

• “The Compare-ers”– they like to watch your kids to make sure that their little Johnny or Sally isn't doing any of the things that your kid does. It’s an awkward feeling knowing that people are only paying attention to make sure their kid is in fact, normal. 

• “The Blamers” -taking “the expert” one step too far, these people like to tell you that it HAD to be something that you did to cause your child to act this way. Either I wasn't loving enough, or I wasn’t emotionally attached enough... anything really that places the blame on me. These people are toxic and it sucks because they are usually family members. 

• “The Magicians” – I call them this because they are usually close friends who slowly start to disappear. They stop calling or texting, they are always too busy to make plans with you. That once a week visit for coffee and chit-chat slowly dwindles down until it’s gone. Tragically, this happens to a lot of parents who find out their child has autism. Close friends, close family just can’t seem to handle it and eventually just vanish. 

• “Attention Addicts” -also made up mostly of family members, these people seem to take the situation you are in and use it as their own personal attention seeking ammo. They’ll tell whoever they run into about it, even if they don’t really have anything to do with the child. It’s actually common in families where not everyone gets along. I was told by the mother of a six year old boy with autism that her sister, who’d she long cut ties with, would use her son as way to get attention from anyone she’d met. Making it sound like she was involved with her son and using the situation to cash in on the sympathy of others. 

• “The Friends” – a combination of all of the above. You just never know how your friends are going to respond to finding out that you have a child with a disability. Really, it can go any which way at all. Some will stick around, be there for you when you need them, some will try to help the best they can, some will never bring it up and act as if nothing has changed at all, (which isn't always bad, it’s just how some react)...some will avoid you. 

• “The Stressors” –another group made up of mostly family members, these people, for whatever reason, seem to enjoy adding to the stress you already have. Petty squabbles, immature arguments and just seemingly, for no reason, starting drama. Outside stress, which is considered any stress brought to you from someone else, is the leading cause of stress for parents of a child with autism or any other disability. Sometimes the only way to get rid of this is to cut ties with the people that cause it. It’s hard sometimes, but when people are relentless in their goal of causing trouble, you do what you have to do. Most of the time, you’re life is better off for it. Less stress equals happiness. 

It’s hard to judge how someone will react to your news and all you can really do is be prepared for anything. Also, sometimes, as much as it hurts to have a friend begin to ignore you, give them some time to process what is actually happening in your life. I've had friends tell me that the reason they “left me alone” was because the just didn't know how to really interact with me anymore. I really do understand that, but communication is key. Make sure people know that they don’t have to feel censored or awkward and that they can ask you questions.  For those that want to place blame, start drama and just basically be rude, you’re better off just trimming the fat. Life with a child who has autism gets hard enough as it is, you shouldn't have to worry about other people making life harder. (This rule applies for any family, kids or not, really.)

When you find people that truly want to be in your life, truly want to help, want to lend an ear or just offer you a hug when you need it... hold on to them.

Another Evaluation, More Bad News

 I wish that just once, Bella could get an evaluation where we got some good news back, but alas, that has yet to happen. I mentioned a couple of weeks ago that Bella was in line to get evaluated to see if she qualified for Occupational and Physical Therapy… I got the results in the mail yesterday.

It was a lot of what I already expected. Bella made limited eye contact, was unable to follow simple directions or two part instructions and was very quick to move from one area to another. Due to the fact that they pulled her from her classroom, it also took her a little bit to readjust to a new routine.

What I didn’t expect to find out was that she has the overall motor skills of an 18-month old. The evaluators also noticed that she has a bilateral deformity that could explain her difficulty with balance and coordination. She has a condition called “Genu valgum”, commonly called "knock-knees”. Her knees touch, but her lower legs angle outwards and her feet don’t come together. It’s quite common in developing children, but she also has hyperextension of the knees and bilateral flat feet. All that together means that she has issues with the construction of her lower legs. We were told to wait a bit before seeking any kind of treatment since sometimes, children will grow out of it...unfortunately, with all of those issues presenting at the same time, there is a pretty high chance that Bella will have to get treated with braces, orthopedic shoes, surgery or, worst case, all three. We’d noticed more and more around home that she was losing her balance more easily and even though she loves to run, that she’d stop after short distances. Never did I expect that there could actually be something wrong with her legs, I just thought that it was all part of the package.

An example of Genu Valgum, also known as "knocked knees". 

Hypertension of the knee, also known as "swayback knees"

Even with all that, they couldn’t help but mention in her eval what a happy, sweet child she was. She smiled the entire time, expect when they administered tests that clearly put pressure on her lower legs and seemed to cause her a little bit of pain. She was chatty and vocal and really enjoyed the fine motor skills tests. She loved the music they played and enjoyed the “dancing test”.

Despite all her issues, she's a loving, happy little girl.

They did, however, also mention that she would “protest” when they tried to get her to switch from one test to another. She would drop to the ground and refuse to get up. We see that a lot at home, but she recovered quickly.

Her sensory integration was tested and she scored in the lowest percentile. Also expected, but still rather shocking to see in writing.

Bella is gradually slipping from the higher level of functioning autism, to the more moderately effected.

Sometimes, I can’t help but get a little worn from all of this. We feel like we’re doing everything we can, but we just keep getting bad news. Regardless, I won’t give up doing whatever needs to be done.

One piece of good news that did come from all of this is the fact that despite all her other issues, Bella is very intelligent. They noted that she was putting together puzzles very quickly and her affinity for music is a great sign that we’ll be able to get her focused on something later on. Having something for her to do that she’s good at can only go to help her self-esteem.

We’re in the process now of figuring out what more we can do at home that will help improve some of her lower scoring areas...

She'll Never Talk To Me

"She’ll Never Talk to Me"...

This was something that Rayne said to me recently that took me a little by surprise and really hit me hard. I was sitting there, watching them play together, Rayne being the only child that Bella actually playfully interacts with. Rayne would twirl, Bella would follow. Rayne would say something and Bella would repeat the tone of her voice, but not the words. This is what happened next:

Rayne: Bella sit down.
(She did)
Rayne: Okay, Bella. Say “Spongebob”.
(Bella smiled but didn’t say anything)
Rayne: Say “Spongebob Squarepants”.
(Bella squealed, happily, but still didn’t say it.

Rayne then looks right at me and says “She’s never going to talk to me is she?”

The look of sadness on her face crushed me. All Rayne ever asks of Bella is for her to talk to her. She actually asked for this for Christmas last year. She loves her sister and you can tell when you see them together. I try to explain it to Rayne the best I can, but she just can’t understand it yet.

At a recent evaluation that Bella had at school, I was told that based on her vocal tone and the way that she sounds when she does say words, it’s quite possible that she’ll never really “talk”. At this point in time, Bella has never spoken on her own. She has repeated very few words that she’s heard and she’ll mimic sounds, but she’s never used purposeful speech.

Rayne seems to accept that, for now, Bella isn’t going to talk. They’ve created their own way of communicating. Hand gestures mostly... their own form of sign language, which is amazing to see.

If I could say anything to parents out there it would be talk to your kids. Really talk to them. Listen to them when they talk to you.

Even after the ten thousandth game of 21 questions.

Even when they're doing that thing when they ask "why" after everything you say.

Even when your child is going on and on.

It’s sometimes easy to take simple things like a long winded story about princesses and frogs or dragons for granted.

My daughter may never talk to me.

...and even with all the other issues we deal with, it hurts almost more than anything else.

I'd like to think that Bella will always have her sister (and brother and new sister/brother) there for her. Siblings are built in friends... at least, after a certain time in your life. 

Busy, busy, busy... an update.

I want to apologize for the gap in posts. It’s been a very busy few weeks.

Bella recently had a very important evaluation done where they determined that she’s making minimal progress with the classes that’s she’s taking right now. It was rather heartbreaking to hear it, but a part of me already expected it. Due to some of her behavior in the class room (climbing, running and escaping the room) they’ve decided that she needs a one-on-one aide. Also, because she’ll be turning three before the end of the school year, she’ll also be transitioning to the 3-5 program.

This is where the catch 22’s come into play. In order to get her into these programs, she needs an official diagnosis. She has a preliminary one right now, and Kirsch is the only place that can give children like Bella a diagnosis. Unfortunately, in order to get into to the Kirsch Center to get that diagnosis, she needs to be registered for those specific programs. So… we had to figure out what to do here.

The only other option we had is to get her registered for disability. If she’s on disability, she automatically qualifies for those programs which will make it possible to get her into the Kirsch Center to get her diagnosis. The official diagnosis will also make it easier to get her enrolled in some extra classes and programs that will help her greatly.

So, the last few weeks, we’ve been scrambling about, collecting paperwork, signatures, evaluations, letters from her speech therapist, teacher and doctors… all in an attempt to get all of this done as quickly as possible.

We’ve got our appointment for SSI and as soon as the paperwork gets sent back to Kirsch, they’ll call us for an appointment.

It’s a long, stressful process and it’s barely just beginning. It doesn’t help that our property managers are giving us a hard time about the few things we’ve requested… which by state law, they aren’t supposed to be able to reject. It just involves a lot of paperwork (that they don’t seem to want to deal with). We are really considering moving, but that’s just another long, stressful process that we’re not really in the mood to deal with at the moment.

I have no issues being a loud-mouthed, unmovable advocate for my child… I’ll fight for the things she needs until I’m blue in the face… I just wish that those I’m up against would be a little more understanding so I didn’t have to advocate so much.

Bella loves going to school, and her teachers and therapist are trying to make sure she stays in the same classes when they redo her schedule. I love that they care so much!

Pertussis (Whooping Cough)

I’m writing this blog to inform parents out there that there is a dangerous outbreak of Pertussis going around in our area right now. Last year around there time, there were five cases… this year, there are over a hundred.

Pertussis in children under a year old can be fatal. Doctors are being told by the Health Department that if any patient comes in with a cough, they should be treated for Pertussis. They’ll also test for it, but the sooner you’re tested, the better.

I’m posting this because even if your child (baby, toddler, YOU) has gotten the vaccine, there is a chance that they can still catch a tamer version. The Health Department is also looking into the fact that the virus may have mutated, rendering the current vaccine less than effective.

Pertussis is a very contagious, upper respiratory bacterial disease that usually causes uncontrollable, violent coughing. The coughing makes it hard for people effected to catch their breath. When babies are effected it can be fatal because their passageways are already so small that the inflammation makes it almost impossible for them to breath normally.

Symptoms of Pertussis usually start out like a cold. After about a week and a half, your child might have a slight fever on and off (102° F or lower), diarrhea and a  runny nose. When your child coughs, it may be hard for them to catch their breath, they may vomit from coughing so hard and in some cases, they could even lose consciousness.

If you’re child has NOT been vaccinated or if they are showing signs, you should call your doctor as soon as possible.

Bella has had a runny nose for quite a few days now, but last night, she woke up coughing. She began coughing so bad that she wasn’t breathing. Needless to say, it was very scary. With someone so young, the more they cough, the more they want to cry which only makes it harder to breath, which of course causes more anxiety. We instantly hooked her up to her nebulizer machine, but it didn’t seem to help. After we got her to calm down, she fell back to sleep but every few hours would have a coughing spell in her sleep. We took her in this morning and she was put on antibiotics. Even if it turns out that she doesn’t have Pertussis, it’s clear that she has some kind of lung infection.

Untreated in older children, Pertussis can lead to pneumonia, nose bleeds, ear infections, a permanent seizure disorder or even death!

We were told, unofficially, that a few of the families that live near us are illegal immigrants from Mexico. They don't have health insurance, so they are most likely not vaccinated, and when they are sick, they don't seek treatment from doctors. The first small outbreak that was control near us was spread by families like these who sent their children to school anyway, or let them go play with other kids. While the other kids, who were vaccinated, were easily treated with medication, if they'd exposed a baby or newborn to this, it could have been fatal.

We received a letter from Bella’s school a few months back that told us that there were are few children that belonged to a girl that lives near us who were never vaccinated against Pertussis. Her kids caught it and it spread around school. Most of the kids who were infected had the vaccine, but still showed some signs, just not as severe. So, please, get your kids vaccinated and encourage your friends to do so too. I know that there is a lot of controversy when it comes to vaccines. Some parents say that it’s a violation of their parental rights to be told that they should vaccinate… but what about our rights of parents to NOT have our kids exposed to diseases that could be avoided or at the least, not be as bad.

This is NOT a pro-vaccination blog. This is a plea to do what you can to protect your kids from diseases like this. 1 in every 200 babies who get Pertussis before six months old will die from it. So it's not just protecting your kids, it's protecting other kids as well.

If you have kids under the age of one in your home and they’ve been exposed to someone who has Pertussis, call your doctor.

If you’d like more information on Pertussis and what you can do to stop the spread of it, these websites are very informative.

Med Health- Pertussis

Pertussis Factsheet

Pertussis Outbreak Continues

“My Little Wanderer”

Imagine, if you will, getting ready to leave the house. You've got three little ones roaming around, excited to venture outside, a diaper bag or two to pack and a mental checklist that gets longer everyday of things you have to remember before leaving the house. You open the door and turn to grab, whatever you need to grab, and before you can say “crap!”, you’re middle child has slipped out the door with cat like contortion. By the time you get the door all the way open, she’s already darting between the cars on her way to the middle of the parking lot.

Time stops for a minute as you run every scenario of what “could” happen through your head. You know that the people you live around zoom in and out of the parking lot without a care in the world sometimes. They wouldn’t be able to stop if they wanted to if she suddenly appeared in front of them from behind one of those parked cars.

It’s one of those situations where you catch her, just in time, but don’t remember moving from the doorway because your brain was too busy thinking up the above scenario.

Well, that has happened to us a few times. It seems, no matter how well we watch Bella, she manages to get away from us. She’s what the autistic community calls a “runner” or a “wanderer”. Some older autistic people are called “escape artists” because it seems no matter what you do, they manage to find a way to get out of the house.

There are a few known reasons why they run. Some wander simply due to being distracted. They hear a noise that they want to find or see something they want to explore. Sometimes they may actually run to get away from a noise that is causing them some discomfort or a situation they find overwhelming or overstimulating. The repetitive sound their feet make when they hit the pavement, the feeling they get when they are in motion… all ways of self-comforting.

Just under half of all autistic children and adults are “runners”. Almost half of all of them are non-verbal or has serious issues with communication. Worst case scenario would be that they run or wander away quickly and get lost. They are unable to communicate their names, addresses or phone numbers.

Being hit by a car and drowning are the two top causes of death for known autistic runners.

We’ve asked our property manager if we could put up a sign that warns drivers that there is an autistic child present. We were told “no” because it’s “our job to keep her out of the street”. While this is true, there are times when she does get away. It would just be nice if the people who lived around us knew to please slow down.

Our next option is to ask to build a fence around our yard. The Peoples with Disabilities Act should allow us to do this without question. This would be more than helpful when we take the kids outside. Not having to chase Bella around the entire time we’re outside would definitely lower the stress level and increase the things we can do along with obviously, keeping her safe and out of the street.

There are some things that parents of autistic runners can do both at home and when you’re out in public.

At home, make sure you utilize child safety locks, knob covers and baby gates. Pretty much whatever you can use to keep your child inside. Put a sign on your door to let people coming in and out know that you’re child might try to sneak out behind them. We’ve had to do this with Bella since she takes any opportunity she can find to get out the door. There have been many times when she’s slipped right past someone and they didn’t even know it until she was running ahead of them. For older children and adults who can get passed locks and knob covers, some have resorted to using door alarms. While it can be pricy to install these alarms, some say that it’s the only thing that they can do.

Running and wandering are also considered stims and autistic people do it for the same reason they spin. Comfort. Sometimes, trying to get rid of the behavior all together can actually cause more anxiety and frustration, so try to give your child a safe place to run. While no amount of running will “get it out their system”, it can help take the urge off running when they shouldn’t.

When you’re out in public, and your child walks on their own but is prone to wander off, consider using a child harness. Also known as a kid “leash”, they aren’t exactly the most popular contraptions in the world, but the safety of your child should be your first concern. We’ve used this with Bella on a couple trips to the zoo and when we take our family walks and even though we have gotten some snide looks and comments, she had a great time being able to walk by herself instead of being trapped in a stroller.

If you’re going out with a large group of friends or family, make sure they all know about your childs tendency to wander or run. The more eyes on the lookout, the better. Also, tying a balloon to your childs wrist will make them easier to spot if by chance, they do get separated from you.

A couple of high tech ideas include electronic monitors that sound an alarm when your childs wanders too far from you. GPS trackers are similar in that each parent has one as does the child. If you’re child were to get lost, the GPS could give you an exact location.

An ID bracelet, similar to a medical alert bracelet can be worn by your child and if they get lost, their information will be easy to find. Another popular idea used by a lot of parents is a “Book of Me”. A little laminated book that contains vital information and contact info that’s worn around your childs neck.

Also, children who are non-verbal, rarely answer to their names. If your child begins to wander off and you need them to stop, consider singing their favorite song. Bella responds to “Twinkle, twinkle little star” better than her own name and I’ve done this frequently to get her to stop in the tracks so I had time to get her. At home, sing the song with your child a lot. Do a little dance or a clapping game to it. I’ve had Bella stop whatever she was doing to join in. Don’t feel silly if you ever have to do in public. Trust me, the odd looks you’ll get matter little when your childs safety is in question.

Having an autistic child that runs or wanders is just another issues you have to deal with. Experimenting with different ways to curb the behavior can get tedious and tiring, but every time you learn to handle a certain issue, life will get just a little bit easier.

Wish us luck on getting that fence!

Running for Bella is a thing of joy... she loves running with her sister.

My Confessions #3

I try to focus on the positives, which isn't really a bad thing, but in that, I’ve been accused of “sugarcoating” my life a little bit. Especially where Bella is concerned.

There are a few reasons that I choose not to write about the darker side of living with autism. I don’t want people to feel sorry for me, or her. I don’t want to come off as being a horrible mother and, the biggest reason, is simply guilt. I have no qualms with admitting when my other kids do stuff that drives me nuts, but for some reason, when it comes to Bella, I just feel bad when I let myself admit that some of her behaviors, drive me nuts. I know that most of it is out of her control, which just goes to make me feel even worse.

I want to say first that I am NOT ashamed of my daughter. When we’re out in public and she’s spinning, flapping her arms and flicking her fingers, I know that she’s just trying to make herself feel better. I can see grown adults snickering, pointing and laughing at her like she’s their personal source of amusement. Bella smiles, unaware of what is really going on around her and sometimes I think that’s not such a bad thing. As much as I want to yell at these people and explain to them what’s really going on, I know that with some people, it wouldn’t even matter. My daughter is not for their amusement! She’s a two year old child and doesn’t deserve being made fun of, especially by adults!

There are things, however, that I wish I knew how to control better. There are times when I just want to sit down, relax with the kids, maybe color or draw something. Bella can not sit still. She is constantly moving. Her attention span is very fleeting and she can’t stick to one thing for more than a few minutes. There are times when I wish she would just sit down with me, curl up and let me read her a story, like Rayne does. There are a lot of things I wish she would do with me, but she just can’t. It does make me sad, but it’s just another thing we’ve got to work on. I am determined to find something that Bella and I can do together that isn’t school related.

All these things might sound like typical two-year-old behaviors, but it’s like a two year old times a thousand. She is unable to entertain herself, focus for long periods of time and most of the things she finds fun are rather destructive. Sometimes it feels like my entire day is made up of cleaning up after Bella. While I’m cleaning up one mess, she’s busy making another one.

I hate that two minutes after I give her a bath, I catch her pouring juice in her hair and have to give her another one. I feel bad for Rayne when she has to come down and get us up at two in the morning because Bella isn’t sleeping and keeps waking her up. I hate that I can turn my back for a minute and she’s managed to get her diaper off. I hate scrubbing poop out of my carpet (and giving her another bath).

Our safe room (livingroom) where Bella spends a lot of her time is relatively empty. There is a couch, an area rub and a TV in there and she still manages to find something to mess with. Unzipping the cushions and pulling the stuffing out, pulling up the rug… trying to climb on to the TV.

She’s really smart, which is also one of our biggest issues right now. No lock, latch or child safety contraption can hold her back. She figures out how to unhook, unlatch and open all of them in very little time. She’s recently learned to open the big doors, so we’ve had to install locks on the inside of the doors as well.

Bella is also a “runner” so her being able to get out the door is dangerous. Also, when we take our walks, we’ve had to resort to putting her on a kid “leash”, which of course has opened up for more mockery. Her safety comes first, so it doesn’t matter to us, but for some reason, a lot of people have a lot to say about it.

Generally, anything the ends up in Bella’s hands will most likely be spilled, poured out, torn, ripped, broken or somehow mangled.

I know that some of this might sound like I am not watching her well enough, but trust me, I watch the kid like a hawk and it seems the second I turn my back, she’s found something to get into. Something to climb on, something to put in her mouth.

So, you take Bella and add in an almost four year old who’s going through a “clingy look at me” phase and an 8 month old who’s learning to crawl, not to mention the everyday house work and you get one hectic schedule to keep.

During the day it does get a little rough, but when Cy gets home from work, he takes over and give me some time to myself. My mother is a godsend and comes over practically everyday to help me out a little bit.

I didn’t write this for people to feel sorry for me… in fact, I think I wanted to write this as a way to really admit to myself that it’s okay to find some of it “drive me crazy” side of things. I know that this is my life and I can accept that. I’m her mother and it’s my job.

With every new issue that comes up, all we can do is find a way to make our lives a little easier every day.

Happy Mother's Day

Happy Mother's Day to ALL the mothers out there.

Every mother is just trying to do the best they can for their kids. Even though the media seems to want society to continue the long enduring pastime of judging other mothers for their choices. Don't let any news report, magazine cover or celebrity make you think that you're "less than".

We really are all members of the same team but unfortunately there will always be those who think they're doing it "right" and other's are doing it "wrong"...

Screw 'em.

If your kids are happy, healthy and you're doing your best, that's all that matters.

Two Steps Forward, One Step Back

It’s been a hectic couple of weeks in my house and I want to apologize for not updating as frequently as I was. I found out a couple of days ago that I have pneumonia. I haven’t felt well for a while now, and it’s nice to finally be on some meds and feeling a bit better. As you can imagine, being that sick and having to take care of three young kids has a way of draining what energy you do have left, right out of you.

Anyway, a few days ago, Bella did something that I’ve been waiting for, for a very long time. She said “I love you”. The overwhelming joy that I felt was amazing and I’m pretty sure I walked around with misty eyes for hours. It was a great step. While I wish that I could focus on that for… well, longer than I have, I also have to focus on the disappointing mid-year review I received.

I wrote before how we sat down with her teachers to discuss what we wanted to happen this year. While this, of course, was just a “hope list”, I was still a little disappointed that she hadn’t met any of her goals. While she is vocalizing more, they still can’t count anything she says as “words in context”. We wanted her to learn twenty, at this point in time, she has about three. I consider three to be a great improvement since she was at zero.

Unfortunately, with every improvement she makes, she also seems to take a step back in another area. While her meltdowns don’t last as long as they used to, she’s begun pinching herself and pulling her own hair. She’s not causing any serious issues yet, but we’re told this behavior can escalate when she gets older and cause severe injury.

 While she’s improved with her irritation to clothing, she’s begun avoiding foods. Unless the food is pureed to the consistency of baby food, she’ll refuse to eat or she’ll take it and then throw it on the floor. A very frustrating issue for us and our carpet.

Perhaps one of the biggest new issues we’ve been facing is her affinity for running. We noticed it last summer, but she wasn’t as nimble on her feet as she is now. When we’d go for our walks in the afternoon, we noticed that she would run ahead of us. We didn’t have an issue with that since we were in the fields and woods, and she never ventured off the paths. One day, she did. We were letting her run on the sidewalk, back and forth between the two of us and in the blink of an eye, she turned and ran right into the road. She doesn’t comprehend danger so the cars that whizzed by just moments earlier wasn’t enough to scare her into not going in the road. A heartstopping lesson that I felt awful for. I was just thankful that there were no cars coming at that moment. We tried to keep her in a stroller, but she fought hard to get out. Once she learned how to unbuckle herself, that was the end of that. We tired walking while holding her hand, but when we wouldn’t let her run free, she’s “protest”. You know, that thing that kids do when they literally become dead weight hanging off your hand? We decided that it was mean to force her into a stroller. She just wanted to explore her surroundings and in a stroller she could barely see around her. It came down to the choice to buy a harness for her. We were used to the snickers and underhanded comments we got from strangers, so we expected to get more now that we were putting our daughter on a “leash”. We used it for the first time when we went to the zoo. We got the looks and the comments, but Bella was happy. She got to see around her and was able to walk free, but she was also safe. Our daughters safety was more important than the opinions of strangers. We use the harness when we go for our family walks and it works out fine, but we make sure to still give her time to run. The simple joy she finds in running as fast as she can isn’t something we want to take away from her. We just want to keep her safe when she does it. This was the main reason the teachers at school suggested looking into a service dog. With so many kids to keep an eye on, Bella’s running was becoming a little bit of an issue. A service dog, for autism, is trained to keep a child from running and if by chance the child does take off, the dog is trained to actually go after them (since they can run faster than most people), stop the child and actually bring them back to you. We’re still working on the service dog, but in the mean time, at least at home, the harness is working just fine.

On the brighter side of it all, she is improving. She’s counting more and she’s made it up to 10. The words are getting clearer and easier to understand. She’s also sorting things into groups by color which is another great step. Unfortunately, she’s only doing these things at home. Her teachers have yet to see or hear her to these things. At school, she’s doing great with sounds. When her teacher holds up a picture of an animal, she can tell her what sound the animal makes. It’s quite fascinating that the way her mind works tells her that what she learns in school is only for school and what she learns at home is only for home. She doesn’t make those animal sounds when she’s here with us.

Although there was a little disappointment with the review, I try to focus more on the positives and all in all, Bella is doing great. She’s actually come quite far in the short time she’s been in speech and with me working with her a few hours a day, she’s improving at home too.

She’s doing the best she can and that’s all anyone can really ask of her. She’s not giving up, so neither am I.

Bella says "I ♥ You" (video)

A huge milestone that I've been waiting months for. Today, Bella said "I love you".

Again, her words are not super clear, but you can tell what she's saying.

It's a wonderful feeling knowing that all the hard work we're doing at home, and her teachers are doing at school, seem to be working.

We are so proud right now.

Thanks for watching!!

A Buddy For Bella

We are currently on the tail of a few organizations that will help us get a therapy dog for our daughter. We are thrilled with the news, but also know that we’re not going to be able to afford a dog from any of these organizations without reaching out for help.

Around the house, we’ve been calling this whole thing “A Buddy for Bella” or “Bella’s Buddy Fund”. So, I guess that’s what we’ll call it. It fits and pretty much explains it all.

We are currently in the VERY early stages of planning a benefit that will help with the costs of acquiring the dog, the training of the dog and the travel expenses involved with actually bringing the dog home. Currently, we have two choices:

Find a suitable dog that fits the criteria and send him out to have him trained with basic and advanced therapy training. It’s cheaper than option two, but still quite pricey.

Option two is to get approved  through an organization that supplies the dog and the training. After getting approved, signing all the paperwork and making our “donation” (payment), the puppy will be picked out and trained by their people and we will be kept updated. This process could take up to a year to complete.

We are highly considering option one simply because it’s cheaper and it doesn’t take quite as long, however, the training will be more specific to Bella’s needs if we went with option two.

We’re currently in the process of playing email tag with a select group of therapy dog organizations.

Our idea right now is find people who would like to contribute something that can be raffled off, or sold. Just to get an idea of what we have to work with in the future.

Again, this entire thing is in the very early stages, but we are looking for ideas. So feel free to leave a comment here, email me at a_buddy_for_bella@yahoo.com or message me on Facebook.

Thank you all so much.