With age, comes more equipment.

It’s been non-stop in our household. Last week was CRAZY. We had an appointment everyday. It was a little ridiculous. We started our week with our intake appointment at Bloorview (it happens to be the biggest and best children’s rehab facility in Canada). Apparently our intake interview? Was to begin ANOTHER wait list. And the magic number around here seems to be 6 months.

Tuesday we had physiotherapy. Not Jillian’s idea of a fun time. Wednesday, I THOUGHT we had nutrition clinic, but got the date wrong- I showed up 1 day early. That was annoying. So, Thursday we schlep down to the doctors office again. This time? The doctor didn’t show. Pure awesomeness.  Friday we had an appointment with the eye clinic. I’ve been noticing  Jillian’s left eye wanders a bit when she gets tired. They said “well, hopefully she’ll grow out of it, but we’d like to see you again……..In 6 months.” Of course. 6 months. That’s an awesome time frame, thanks for that!

I inserted a picture tonight of a new piece of equipment for Jillian.  It’s a “Dondolino Stander”. Hopefully by getting her into a PROPER standing position (therefore, not on her toes) it’ll encourage her to walk. Along with some more equipment in the next few months (a gait trainer and possibly a pediatric walker) if Jillian doesn’t start walking soon, our whole apartment will be over run by equipment.)

It’s been a long haul, but, hopefully it’ll all pay off in the long run.

I’m here to Introduce myself!

Hi Everyone! I’m Cheryl. I’m a 29 year old mom to 2 beautiful little girls. Lauren who is a typically developing 3.5 year old and Jillian who is an 18 month old adjusted (20.5 months actually). Jillian was diagnosed with Cerebral Palsy on October 22, 2009. I post here from time to time to share some insight from a parent with a child with special needs.

I look forward to doing more upbeat posts SOON! But, today, I wrote about Grief. You can find it here: http://www.parentsupportspace.com/?p=1063

Thanks for giving me a chance guys! So happy to join you.

Grief & CP (Guest Post by Cheryl)

Grief – it’s a funny thing, right? If you’ve seen my posts before, you know that I have 2 beautiful daughters. Lauren who is almost 3.5 and Jillian who is 20.5 months but only 18 months adjusted. When Jillian was born 10 weeks early, we had no indication that anything would be “wrong”. Whenever I’ve blogged here, I’ve blogged about being a parent advocate, being strong for my child. Today? I’m not feeling strong.

When Jillian was diagnosed with Cerebral Palsy on October 22, 2009, the doctor who gave me the news, told me it’s ok to grieve. I was confused. Grieve?! I still (luckily) have my 2 beautiful girls! But, you know what’s funny? Grief can sneak up on you.

Now, I still consider myself a medical advocate for my child. If someone doesn’t advocate for my child, who will? That being said. The grief has started. Some days it’s better then others. Some days I adopt the “laugh or I cry” mentality. Today? It’s a crying day.

What happened that changed my outlook? I guess it’s been coming for a while. Some days I have hard days. Most days I’m fine. Jillian had physio therapy today. Jillian HATES her physiotherapist. I feel like I’m not working hard enough to find her a better one, but that’s the way the system works. Her physiotherapist walks in and Jillian says “I don’t want it”. Her PT has decided that she needed change tactics. She wants to be Jillian’s friend. Well, you’re not here to be her friend, do your work. Plus? The snide comments need to stop. You need to have parents on your side. Not working against you. I get told today “You know, if you had done her exercises more, this wouldn’t be happening.” or “you need to stop letting her play on the floor. You need to concentrate on getting her to sit up”. Right. Jillian doesn’t WANT to be stopped. She wants to get down and crawl. Chase after her sister. Do NORMAL kid things.

I guess the guilt started when my friend Anna had a 26 weeker. All these people flocked to her. Even people that had barely talked to her. I was there for her, almost everyday. It was easy since I lived close to the hospital. I had a hard time with it since her son and Jillian were due within 3 days of each other. But. I had a terrible thought. I thought “Man. I hope these people remember where I am when I have Jillian”. When Jillian was born at 30 weeks, I remember hearing that in my head. Did I cause this? Everyone talks about Karma. Did I do this to my little girl?

I am a fixer. I want to help people. I want Jillian to have a “normal” childhood. As normal as it can be going back and forth to doctors appointments and therapists. Why can’t I fix this? Why can’t I be happy about the progress she’s making? Am I pushing her too hard? She doesn’t sit unassisted. She doesn’t stand (properly) She doesn’t walk. She’s just now starting to crawl “normally”. So, grief. It happens even with healthy children. Grieving the fact that my life is now dominated by doctors appointments. Grief that I’m not fighting hard enough for her. Grief that I’m pushing her too hard.

So tell me. I hear “Jillian doeesn’t LOOK mental”. Well, CP isn’t a mental condition (For the most part. There are some aspects of CP that can be). Am I doing everything I can for her? Am I expecting too much? So yes. I have 2 healthy little girls. But still, I grieve. Is this normal? Am I normal?

Cheryl (Visit Cheryl’s blog by clicking here.)

Home safety

Keeping our homes safe keeps our kids safe and making sure that every detail is perfect insures us all a good nights sleep knowing that everything is ok for our kids. Some of the things I worry about the most are:

• Doors
• Windows
• Cabinets
• Outlets
• Water faucets

Now, let me explain each one a little.

Doors: I worry about little fingers being pinched or slammed in doors. For this there are great little plastic pieces you can buy to keep doors from closing all the way so little fingers don’t get hurt. Another reason for doors is because, in our house we have a door that leads to our basement. Little Miss has figured out how to move the door handle just right to open it which increases her chances of falling down the stairs. Make sure you have door handle covers so that little hands cannot open doors. There are even child proof products for sliding doors which will prevent fingers being stuck in between bi-fold sliding doors. We have metal ones in our house and they are dangerous. A friend of mine knew someone whose child almost got their finger cut off by one, so please make sure that yours are safe.

Windows: I always make sure that when the kids are laying down for naps or going to sleep at night that the windows are closed and locked. There’s nothing more terrifying to me than thinking that either my kids could open a window and fall out or someone could climb in through one of them. Yes, I am one of ‘those moms’ that worries about everything. lol

Cabinets: We keep everything in our cabinets thinking that they are safer there. Truth is though, that no matter how high I place things in the cabinets little hands can always get inside of them since my children are like little monkeys. lol Making sure that you have child locks on the inside of the cabinets and keep all medications and cleaning products locked in childproof containers is the only way to completely assure that they are safe from monkeys kids.

Outlets: These are usually one of the first things parents childproof besides cabinets. They are cheap and easily fixed, right? Well think again, did you know that most of the childproof outlet covers are a choking hazard? Yep, that’s right! The best way to make sure that your outlets and child are safe from each other is to get larger sized outlet covers, especially if your kids are anything like my youngest who thinks that anything and everything is edible.

And finally water faucets. Making sure that your hot water heater is set properly will ensure that your kids won’t get burned or scalded in the bathtub or while washing their hands. It’s not something we all think about but as soon as your child is old enough to sit in the tub by him/herself then we have to remember that water temperature is important. And I’m guilty of starting a bath thinking the water temperature is fine until I put my hand in a couple minutes later only to find that it warmed up and is now really hot! That could be dangerous! Make sure your hot water is set at around 120.  But please ask your childs pediatrician what they suggest first.

There are many great online sites where you can find some awesome child proofing products for your home. Google childproofing my home and see all the amazing things you can find to make sure your kids are as safe as can be inside your home.

If you have any safety tips I’d love to hear them!

A New Journey

*I’ll warn anyone with delicate sensibilities this post is going to contain bodily function talk.

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I’m so glad my three year old isn’t potty trained yet. I’m thankful for the diapers that cover his butt and the foul smelling diarrhea that he has filled them with lately. After another bout of cleaning up a child, his bed, and doing laundry at 4:30am, I called our family doctor. Aaron’s had a pretty constant belly ache for almost a month now. Then we got the diarrhea and sometimes vomiting when it’s really bad. I can’t stand to see my child in so much agony. We’re past the point where this is a virus or some other passing issue.

I took him to the doctor last week. She had his belly x-rayed so we could see how full of poop he really is. She said he felt full. Maybe constipation was the cause. Nope. His intestines (as far as the matter filling them) look OK. So she suggested maybe a food allergy or even possible celiac disease. The course of action was to get blood drawn for allergy testing and if it’s positive for wheat, then get a referral to a pediatric gastroenterologist. We go the blood drawn, gave a stool sample, and we’ll have the allergy test results in anywhere form 1-3 weeks.

In the meantime, I did a social experiment of my own. The next day I got gluten free products to replace Aaron’s favorite foods. He was mostly gluten free (except additives because I don’t know them all yet and was only experimenting) until Friday. That’s just THREE days of going gluten free and we saw a vast improvement. Then to test our theory, I’ve been letting him eat whatever the last two days. We’re back to FOUL, nasty, diarrhea, and a kid complaining of a constant belly ache.

To me this all suggests he’s got gluten issues even without allergy testing. I called and asked for the referral NOW. We’ll see if that happens as I’m dealing with military doctors. If we wait for the allergy tests to come back, at this point we could be waiting 2 more weeks for the allergy tests + 2 more weeks for a referral + the time it takes the specialist to fit Aaron in for an appointment + the time for any tests the specialist runs. I really don’t see the need to make my child suffer like that. Let’s get these referrals and get this show on the road. We need to know for sure what we’re dealing with.

Feeling Rejected

Sometimes it’s hard not to take the feelings of rejection personally from my oldest son. I know it’s the Asperger’s, but I’m only human, and sometimes it hurts. He was my first baby. The bond between mother and baby was supposed to be magical according to all the books. It’s been anything but. What really hit me the hardest is when my youngest, now three, started saying “I love you too mom,” in response to when I say “I love you,” to him. My oldest son has NEVER said, “I love you,” to either myself or his dad. When we hug him it feels like an obligation on his part. He’s never been one to like kisses. I know he loves us in his own way, and he can’t help that he doesn’t show it outwardly, but sometimes it doesn’t stop the sting.

IEP Progress and a Book Report

We had our meeting last week between snow storms to determine what testing Zach needs from the school district. The social worker was able to attend since they changed the date, but it was all pretty straight forward, so I was OK with signing the papers. They have sixty calendar days from that date to get Zach’s testing done, and then we reconvene to draft his IEP.

Being off school for a six day weekend has been challenging for us all. Zach had a book report to do. Trying to get a kid with Asperger’s to elaborate on a topic is like pulling off finger nails one by one. He was to tell how the book relates to his own life, or describe a part he identifies with. He says “I go trick or treating too.” Oh that was so much fun. After four revisions, I got him to spend enough time on the report to where it’s “good enough.” It wasn’t worth any more torture. In the end it was still better than doing what Zach wanted to do, and that was wait until the night before it was due to get it done.

From in-home therapy to pre-school

Since Little Miss was an infant I always knew something was different about her. She was a hard baby to deal with; constantly screaming, never happy, didn’t smile, didn’t make good eye contact, had problems with transitions, terrible separation anxiety, and much more. I worried that she was autistic. Why wouldn’t she calm down when I held her? Why did she constantly scream? These things didn’t make sense to me since my other children would stop crying and curl up in my arms and smile when I held them. It was as if she couldn’t feel me holding her even though I was. Something that really disturbed me was that as she got older she would bang her head and other body parts into objects; table, wall, furniture, and not seem to really feel it. It should have hurt enough to gather a response but it didn’t and she seemed to enjoy this behavior. Her pain tolerance seemed to be extremely high and that was the scariest part for me! When she was about 1 she grabbed my coffee cup and poured the entire cup of hot coffee down the front of her bare belly and chest and there was zero reaction. ZERO! She was beat red but was completely unfazed.

Since I had my first child back in 2001 we have been in a local program called Parents As Teachers, where an educational specialist would come to our home once every couple of months and play with my kids to test and encourage development. They do different games to see how they were doing with fine motor skills, gross motor skills, communication and so on and also teach us how to encourage these activities to help increase their developmental skills to an age appropriate level. For the past 3 years we have had an amazing educator that has been nothing but helpful, kind and encouraging to me and my children. It was her that told me about Sensory Processing Disorder (SPD) and how she thought that was the issue with Little Miss and my other two children. She referred me to another local program called First Steps to get an evaluation to test for Autism, SPD and other disorders. After our initial evaluations we learned that she was behind in most areas and would qualify for in-home therapies.

It started out that she would receive Speech Therapy and Developmental Therapy each, once a week for an hour. We have been fortunate enough to have the two best in our area which are: Shireen (Speech Therapist & co-author for The Parent Support Space) and April (Developmental Therapist and co-author for The Parent Support Space). After a while we were told that having Little Miss in Occupational Therapy might be good as well so after a couple of months we also started receiving in-home Occupational Therapy once a  week for an hour with Laura (Occupational Therapist & co-author of The Parent Support Space). We have had some amazing changes with Little Miss since the therapies began. She is saying more words without having to sign, doing slightly better with her separation anxiety (there still a lot of room for improvement in that area but  I’ll take what I can get.) and she has had enough sensory input that she now feels pain a little more normally on occasion but not on a regular basis. She does still have her meltdowns that never seem to end but we have noticed that her smaller meltdowns are shorter. She can now calm herself from short meltdowns by sucking her thumb and holding her favorite animal. The big meltdowns however, are still raging. The only thing that I have found that calms her during these meltdowns are me rocking her while holding her very very tight in my arms.

At the age of three First Steps graduates the child out of their program. This really has me nervous! She will be three in about six weeks and I’m nervous on how she will act since she is so extremely routine oriented. Even over the holidays she regressed a little since she was not on her normal schedule and missed some therapy appointments. We are currently going through more evaluations to see if she qualifies for our local Special Education Program to go to pre-school and receive therapies while there.

So here is the part I’m really worried about: Little Miss, as I said before, has bad separation anxiety! She goes everywhere with me; to do laundry, dishes, bathroom, shower, taking out the trash, etc. and so on. So much so that she does not enjoy doing kid activities like playing with her dolls, interacting with her siblings, spending time with her father or grandparents, and being alone. She is stuck to me like glue…super glue! She is my shadow, my lonely puppy, that little piece of gum that you can’t get off our shoe…she is my other half . I know that it has always hurt my husbands feelings that she is not close to him and we have tried to remedy the situation but to no avail. She is a mommy’s girl, period. She enjoys doing mommy things; cooking, cleaning, dishes, etc. Soo…my point…how is she going to do at school without me there? And more importantly how are the teachers going to deal with my child when she screams her blood curling scream (that never seems to end) while they have 20 other children in the class to look after, play with and take care of? How is she supposed to learn and interact if she is so attached to me that she has a major meltdown over me leaving her there each day? These are thoughts that I have each day that we get closer and closer to her birthday because if she qualifies for the services of Early/Special Education then she will start as soon as she has her birthday.

However, I have been assured that the teachers are familiar with this and will be fine. The first week, I’ve been told, will be the most difficult but been when she learns that she gets to play, have fun, interact with other children and most importantly be a kid, and that I will return after only a couple of hours, that she will be fine and actually look forward to her school days. I hope that they are correct. Will I be the crazy mom that stays outside the classroom out of eyesight to make sure she calms down? Or the mom that stays the entire time in the hallway just in case the teacher or my daughter needs me at some point? Hell yes! At least for the first couple of weeks until I know that she is ok there without throwing fits and having meltdowns that would make a howling banshee look like a quiet angel.

We will get through this. It will be good for her…and me. Yes, I am nervous for her but know that this transition from in-home therapies to pre-school will be fun, enjoyable and a wonderful learning experience…for both of us.

IEP Help

Chances are if your child has any sort of limitations, and are in school, then they have an IEP or individualized education plan. Children with disabilities are entitled to a “free and appropriate education.”

I am so thankful to the doctors who diagnosed Zach with Asperger’s. They gave us this thick packet on IEPs in our state to help us in the process from the Education Law Center- PA. If you need help with your child’s education and/or IEP, I’d look for a similar organization in your state.

Finding Support

Since getting Zach’s Asperger’s diagnosis, it’s been kind of odd for us. We’re avoiding telling Zach what the doctors have said because he’s so high functioning and just needs a little help in the social areas. We don’t want him to use his diagnosis as a crutch for poor choices in behavior because he can try to be manipulative like that.We are telling the adults in his life that need to know.

The reaction I’ve gotten from my family is more of an “Oh.” reaction. They don’t really know what to say even though I tell them it doesn’t change Zach, it just changes our techniques for helping him cope with life.

I’ve been looking at local groups online. I have to admit I’m a put put off by their websites. From what I can tell, the families that participate in the groups have kids who are more symptomatic than Zach. I feel like they will look at us and think “You don’t have it so bad. Why are you here?” They also seem to really push the gluten and casein free diet. One of the groups has that as #4 on their list of things you should do after your child is diagnosed on the autism spectrum. The diet may work for some kids. I won’t dispute the anecdotal evidence parents have shown. I just don’t feel it’s the right choice for our family. I just feel like the local groups are pushing the gluten and casein free diet a little too much for my taste.

So now what? I can’t do anything with our health care, the school, or finding a new therapist for Zach until I have that final report in my hands. That has yet to happen. At the same time, he’s not a “normal” child, but he’s not as symptomatic as a lot of kids on the autism spectrum either. Where do we fit into all of this? This is a question I will probably be asking a lot along our journey. You’re welcome to come along for the ride.

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