The Mommyhood Life

Autism

Filling in the Nutritional Gap During the School Year! #NatureMadeAtTarget

This post was sponsored by Nature Made® as part of an Influencer Activation for Influence Central.
With school back in session, I am back to worrying about the kid’s getting all the vitamins they need throughout the day.  They are eating breakfast and lunch at school, which only leaves me preparing and watching how much is eaten at one meal a day.  Knowing that Aidan is already a very picky eater and that the medication he is on for his autism usually leaves him with little to no interest in food, I worry that he isn’t getting much nutrition from his diet.

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The Discovery Museums in Acton, Ma. ~ Hands on Minds at Play!

On Saturday we were invited to explore the Discovery Museums in Acton, Massachusetts.  My mother has talked about how great this place was when my brother and I were younger, however I never made the trip over to check them out with my kids before Saturday.  After visiting the museums as an adult, I am now regretting not becoming a member when the kids were little!

The Discovery Museums consists of two separate museums that are located next to each other, the Children’s Discovery Museum and the Science Discovery Museum.  For the general cost of admission you receive access to both museums!


The first museum we explored was the Children’s Discovery Museum.  This museum is created for toddlers thru early grade school age.  It is designed within a large Victorian house, and every room has a different theme.  Each time we walked through another doorway we were greeted with an exciting adventure, from a train room, to a bubble and water room, to a full diner set up, and of course Aidan’s favorite the camping themed room. 
There was so much hands on fun in every nook and cranny of this house and the kids had so much fun exploring.

I loved how this museum was also very low-key and relaxed.  It is the perfect place to take the little ones and just get on the floor and have fun.  
I remember countless days feeling trapped in the house with twin infants and wishing there was a place I could take Anthony and the babies on my own.  The Children’s Discovery Museum would have been absolutely perfect.

Once we finished up the Children’s Discovery Museum it was time to head over to the Science Discovery Museum.  

This was what Anthony was excited about, he is obsessed with everything science related right now and this museum was perfect for him.

Everything at the Science Discovery Museum was hands on, from magnet exhibits, a mist tornado exhibit, and an inventors station.  This museum really encourages kids to use their hands and minds while learning and discovering.
I really like how this museum is extremely child friendly,  this is NOT a museum where you walk around and look but don’t touch.  At the Science Discovery Museum the kids got to jump around from exhibit to exhibit, laughing and experiencing all there was to learn.

  This meant Aidan really got to enjoy his experience, and I was able to relax knowing he was less likely to have a meltdown.  This in turn meant I got to really watch my science lover Anthony in his element, which was incredibly heart warming for me.

Anthony’s favorite exhibit at the Science Discovery Museum was the harmonograph drawings.  Lilly’s favorite part of the museum was all the magnet exhibits, while Aidan couldn’t get enough of all the sound studio and musical instruments.

The Discovery Museums also offers an amazing Autism program.  During certain times of the month the museum closes to the public and families of children with Autism Spectrum Disorder are able to visit the museums for free and enjoy exploring the exhibits with other families that have similar needs.  

Museum staff can usually direct visitors to a quiet space in each building for children that may need to take a break from stimulation.  
Also food, including gluten-free options, is generously provided by Not Your Average Joe’s of Acton!  

The 2016 event calendar is available here along with more information.

Need an unique place to host a birthday party?  The Discovery Museums have you covered with customizable birthday party packages.  Party packages include unlimited time at the museums, invitations, activities, goody bags, and more.

They can host more than just birthday parties too!  
Check out their venues for family functions, meetings, and even wedding receptions.

The Discovery Museums offers annual memberships starting at $90 for 2 family members and $140 for 4 family members.  This is a great option for families with young children who are looking for a safe and educational place to explore through out the year.  This option would allow you to escape the house during the cold winter months for a change of scenery and enjoy picnics and outdoor play once the nicer weather arrives.
The Discovery Museums
Where:
177 Main Street
Acton, Ma 01720
Cost:
Child and Adult: $12.50
Seniors: $11.50
Children under 1 years old are Free
Teachers are Free
Disclosure: We received free passes to help facilitate this post.  All opinions are 100% my own.

ChewiGem for the Need to Chew! Fashionable Sensory Chewable Jewelry ~ Review and Giveaway

*Thank you to ChewiGem for Sponsoring this post and giveaway*
 As a mom of children with sensory processing issues who are also on the autism spectrum I’ve been dealing with my kids mouthing objects for a long time.  The collar of the shirt gets chewed on, the toy they were playing with ends up with teeth marks, or the top of a pencil, everything ends up in their mouth!  I remember the day I talked to Aidan’s therapist about the chewing and her handing me a white rubber toothbrush looking chew toy.  My mind immediately went to, “this is a dog toy”  and I honestly never gave it to Aidan or Lilly. 
The thing with mouthing and chewing items is that you don’t really realize how much of it is sensory until a child is outgrowing their toddler years.  When a child is two or even three and he puts a toy in his mouth, you assume its part of being a toddler.  However when a four or five year old, is still putting toys in their mouth you know there’s an issue.  Unfortunately this is also an age that kids are venturing out, kids are starting preschool or kindergarten, kids are making friends and realizing what is the social norm and what isn’t. 
As an autism mom I want to raise my children as main stream as possible, and to me sending my five year old off to school with a piece of rubber that I could totally mistake for a toy I’d throw at my puppy just didn’t seem right. 
I recently learned about ChewiGem through this review and I am very excited.  I know as my children progress through school the needs of their sensory processing disorder will become an issue that they will need to self regulate and instead of chewing on clothes, hair, or pencils, having ChewiGem as an option will be a great relief.  The jewelry is fun and funky in design so that no one would guess that it is a therapy item and my kids are excited to wear them, however they are durable and safe enough that these items are very usable.

 Details:
products are made of FDA approved silicone and are lead, latex, BPA, PVC and phthalate free
 
When a child or adult with additional needs is better able to focus and self soothe, their confidence level increases while their anxiety level decreases
 
Prices Range from $14.95-$19.95 depending on Design Choice
 Enter to win a ChewiGem Necklace or Bracelet
Giveaway Ends: October 14th, 2014 
 
 
Connect with ChewiGem and Learn More:
 *Thank you to ChewiGem for Sponsoring this post and giveaway*
 

Holiday Gift Guide 2013 ~ Top 10 Gift Ideas for Children with Autism and Sensory Disorders

It can be difficult shopping for a child with different Sensory needs than the average child.  Here are my top ten gift ideas that Aidan and Lilly both love, despite their sensory issues.

*This Post contains Affiliate Links for your Convenience*
1.  Living Sands, this is a product I recently came across while out shopping and the kids loved it!  Its like being at the beach and feeling the sand without any mess.  This is a great hands on sensory activity.
 2.  Water Table,  We love our water table!  We use it outside in the summer and inside in the winter.  We fill it with water, sand, pasta, and much more.  There is just so many sensory activities that can be done with a water table!
3.  Ikea Ekorre Indoor Swing,  we have this swing in our basement and Aidan uses it constantly.  When he first got diagnosed with Autism we looked into getting an autism swing, but the prices of them were insane.  After some research I found out that this was the alternative that many autism families use, and I have to say it is perfect.  It cuddles Aidan all around which he loves, Lilly doesn’t have to worry about holding on, and it gives them both so much input!
4.  LEGO sets are a great option.  Aidan always loved the pushing them together and pulling them apart sensation.  Now that he is older he’s able to do much more with them.
5. Wooden Peg Puzzles are another great option.  They can be educational and fun.  Plus children are able to do them with an adult or on their own.
6.  iPad, I have to say the item that has impacted my children the most is the iPad.  There are so many Apps available for Autism and Education, its amazing!
 7.  Fun Shape® Electric Massagers, These vibrating bugs are great for sensory input!  We have a handful of them and they are so much fun.
 8.  Weighted Blanket,  I made Aidan’s weighted blanket (tutorial) and I think its a must have!  It helps calm him down at night, we put it on his lap or on his back when he’s playing.  The extra weight seems to basically help him know where his body is and that gives him the ability to relax.
 9.  Play Tunnel,  These are great to help kids burn off energy crawling through them, but there also great for kids to hide in and roll around in.  We also put it on the kids while their standing up and they jump around.  There’s lots of fun to be had with these!
 10.  Indoor Personal Trampoline, This is the trampoline we have for the kids.  Its perfect, it plays music, counts, and plays the ABC’s.  Aidan has so much energy that this helps a lot in the winter to let him burn off some energy, and with Lilly’s low muscle tone the handle bars are perfect for her and she gets to work on building her muscle strength.
*This Post contains Affiliate Links for your Convenience*

Autism Speaks ~ AutismCares Ipad 2 Grant Open till Friday

Ipads can have a huge impact on an autistic child and his/her family.  I have witnessed it first hand with my own children.  However IPads are expensive, too expensive for most families who are also taking on the financial impact of having a special needs child. 
When I saw in the Autism Speaks newsletter today that Autism Cares is accepting applications this week for their Ipad 2 Grant, I wanted to make sure I shared it with everyone!
There are some eligibility requirements as listed on the AutismCares website,  so if your interested I highly recommend you link over and read about this program. 
http://www.autismcares.org/site/c.mqLOIYOBKlF/b.4745901/k.BD21/Home.htmhttp://www.autismcares.org/site/c.mqLOIYOBKlF/b.4745901/k.BD21/Home.htm

 

One IEP Done ~ Success!

Puma
We had another IEP meeting for Anthony, and I am relieved we came out with a plan I am excited about.

Last spring, I had rejected Anthony’s IEP plan and took him into Children’s Hospital for their full learning disabilities program testing.  After two and a half years with the same type of services (language and reading pull outs 2-3 times a week) on his IEP and no visible improvement, I was tired of the black and white meetings. 
Once I entered the world of autism with Aidan, it really opened my eyes to what it takes to advocate for your special needs children.  Prior to last years IEP meeting I always blindly trusted the school system.  Big Mistake!  Don’t get me wrong, Anthony’s teachers have all been remarkable, especially his SPED teachers.  However they don’t get to make all the decisions on what services your child gets, there’s a bunch of people behind the scenes who may in fact care about what your child needs as a student but its also there responsibility to care about the schools budget.
Last year when I brought his education up to some teacher friends I was told “the squeaky wheel gets the goods” another words, if you don’t push for what you think your child needs, there’s a good chance you’ll get jumped over to the parent who’s making a fuss.  Well it definitely feels like I’ve become the squeakiest wheel in the city with the 3 kids.
The testing revealed that Anthony has a severe language disorder that will not improve with the education plan that the school had continued to lay out.  Anthony needed a smaller, language based program, comparable with an ESL classroom but in a sped setting.
When we reconvened last week, I was pleasantly surprised that the school already had their language class room’s teacher in the meeting and a plan to put Anthony into the program for a majority of the day.  I also instantly fell in love with how well his new language teacher advocated for him.  By the end of the meeting she had gotten him more services than I had even planned for.
All in all I am excited for this year because understanding fully what the issue is and having the right service plan in place gives me great hope that he will be able to catch up to his peers.

RSV, Asthma, Phnumonia? who knows!

Lilly started her normal cough she gets 2-3 times a month, that congested type cough that she gets that keeps her up all night coughing to the point of gagging and throwing up if she’s eaten anything within the hour.  At first I thought, oh great here we go again! Cause we’ve been battling this cough for months with no resolution.  Have gone to the pediatrician frequently, had an inhaler but  the pedi had never heard wheezing so “asthma” was never truly diagnosed, there’s no cough medications for 3 year olds, so we had sort of learned to live with the cough remedying it with honey and warm baths hoping she would grow out of it. 
 
However this episode quickly turned from bad to worse.  She developed a fever, and needed to have tylenol and mortin alternated almost every 4 hours through out the night.  In the morning when I was expecting things to calm down like past episodes of this cough, things got even worse.  I couldnt break her fever, motrin…. didnt come down! tylenol…. didnt come down!  Ice packs…. came down for a few moments then spiked back up! Cool bath…. only kept it down for just under an hour! 
 
So off to the Pedi we went, they checked her and her oxygen levels were low so they sent us over to the ER.  This is where a week long battle began!  I learned alot in this week and came to realize…. when a mothers instinct is telling you something, LISTEN! No matter who your going up against, doctors, specialists, nurses, other mothers… doesnt matter! you know your baby better than anyone else could possibly understand, so always trust that feeling in your gut.
 
We went to the local ER, that was about 15 minutes away.  Its one of those town/city hospitals, ya know not a major hospital, just the average community type hospital, but it had been where I had alway gone before so thought nothing of it brushing thoughts of taking the extra 15 minutes and heading into the city to Children’s Hospital.  We where in the ER for about 6 hours, with continuouse oxygen, labs, and chest xrays.  according to the ER doctor who seemed to understand Lilly, there was a good propability of phnumonia.  It was on the line whether it was viral or phnumonia but with the fever and the oxygen not helping they started the antibiotics thinking better safe then sorry.  Also starting steroids and nebulizer treatments.  It was getting late, the fever was low and staying low but they couldnt stabilize her oxygen levels which were in turn causing her heart rate to raise so they decided to admitt her to be safe, but the ER doctor asumed we’d be “discharged in 24 hours, 48 hours max.  It was just a matter of getting the antibiotics and steroids in her system”.  This all made sense, I have a medical assisting background and was one of my grandmothers primary care givers in her final days so I figured out alot about oxygen levels and such with her constant cycles of phnumonia and sever asthma along with COPD.  We were moved up to the pedi floor and tried to get some rest through the night.
The next morning she was off the oxygen and I was excited at the apect of her getting better of course but of going home also, because i never imagined being admitted and was beyond unprepared.  The boys are ALOT of work and while they have a wonderful dad, he’s working from home so the boys arnt monitored the way they need to be concidering the autism factor.  So the on call doctor came in that morning, which happened to be one I knew because he worked in the kids pedi office, he decided to keep us another night just to let her get off the oxygen over night, ok still making sense.  Then struck me with a wammy, “the xray doesnt really show phnumonia, so we dont need the antibiotic, its viral”  I was confused but figured well he’s the doctor right? well by the end of the day she was back on the oxygen, and had gone from out of bed jumping around to not wanting to move from the bed falling in and out of a nap.
My gut was telling me “its the antibiotics, she should never have been taken off of them” but the doctor, the nurse, the respitory therapist all seemed in agreement.  We spent two more sleepless nights on oxygen in the hospital, some nurses would get her up and moving, blowing bubbles and what not but once rotations happened the next nurse would put her back in bed and on oxygen so she wasnt getting anything coughed out of her lungs.  I was exhausted and I didnt know what to do but the following night scared the adrnealin right back into me!  around 4:00 in the morning her levels dropped again, but didnt go up with the oxygen, nor did they go up following the nebulizer treatment.  They called the on call house doctor in, who was out of Children’s hospital Boston, which is where the kids see all there other specialists.  He came in sent us down for a new xray, which showed no change, he started us on antibiotics again immediatly and ordered some blood work.  I was astonished and felt like what? we just waisted 4 days for nothing!  The levels raised within a few hours and I tried to get Lilly hushed back to sleep.  That morning as the daily rounds started the nurses knew I was furiose and sent the pedi into our room first.  He ran an RSV test which came back positive, ok she does have a virus, but he seemed adiment on getting her home that day.  He insisted that getting her up and out of bed would get her oxygen up and with RSV theres no true reason for the kids to be in the hospital while it clears, sounded awesome right? A light at the end of the tunnel is what it sounded like!  Two boys at home, a house surely destroyed, a autsitic daughter going on 6 nights no sleep and having melt downs about wanting her bed, and a Mamma who hasnt slept in over a week and had been eating out of a vending machine all week!  Well the doctor went on his way, and I sat waiting for the nurse to come let us off the machines, but they seemed to conserned that her oxygen levels wouldnt stay up when they took her off the oxygen machine for only moments at a time.  Looking back at that day I realize I knew there was way to many people calling the shots, one doctor does something another changes it, one nurse starts a routine another changes it.  I realize my gut was saying she should be on antibiotics from day 1 and I should get her out of here this place is a circus but I had faith in the “professionals”, I was exhausted, and I was doubting my intuition.  Later that day Daddy came in and let me go home, shower, rest, cuddle my boys, and refresh myself.  I got back into the hospital with real food in my belly, some sleep, and a sense of peace that the kids were ok at home.  That next morning after not seeing the prior days pediatrician sense the morning before, actually not seeing any one of the doctors more than once over the past week, I was ready to lay into whoever came into the hospital room next.  To my delight it was her pediatrician, finally!  I looked at him dead in the eye and said “we are  leaving today! one way or another, we are out of here!”  he seemed a bit caught off gaurd, but I wasnt backing down.  He continued on saying she wasnt ready to get off the oxygen and lets continue trying through out the day, hmmm the same thing I’d heard all week from all 7 prior doctors, nope no way was I taking this, and from her own pediatrician! Really? your supposed to be the one who knows her, fixes her, understands I have 3 kids with disabilities, knows my overnight back is full of all my prescriptions, and this is what your offering me? More of the same B*llsh*t!
I began packing our stuff, insisting I would discharge her myself without medical advise if they didnt decide on another course of action, and infuriatingly telling them if she’s so sick that we need to spend another night in the hospital it needs to be spent in Boston at Children’s Hospital.  At first they wouldnt agree to a transfer saying her case wasnt severe enough and didnt warrent a transfer, but when they realized I was fully prepared to walk out with MY daughter and simply drive the extra 15 minutes into the city and walk into that emergency room, there mood changed and an ambulance was there within the hour transporting us.
I think the following 24 hours were extremely enlightening.  I have always favored Childrens Hospital, there the best, the specialists are top notch, I am always comfortable with my kids care through that hospital.  However for some reason I left my daughters care and choice of her needs in someone else’s hands besides my own, and that will never EVER happen again.
Within an hour of being at Children’s my daughter was in a new bed, had xrays, met her new nurse, and her pediatric staff on the floor.  The same doctors were always rotating on her floor and they had a list along with photos on the room walls so parent knew who was taking care of their kids.  Nurses carried cell phones and within seconds of a machine beeping they were in the room, I could press the call button and my nurse willingly came in (smiling!)  I was in awe at the difference.  I had just spent a week dealing with nurses who spent more time gossping at the station then caring for my daughter, and having far more respect for the wonderful women who would come in to clean up and change the sheets then I did for the licensed medical staff. 
That day I saw a asthma specialist, had a diagnosis of RSV, Phnumonia, and Asthma.  Also had a treatment plan for home, along with a well mapped out course of action and what goals to look for.  I was simply amazed.  Lilly was off the oxygen within a few hours and stayed off for the remainder of the day.  That night Lilly’s oxygen dropped twice once the nurse came in repositioned her, patted her back, and helped her get it back up with out putting her back on the oxygen.  The second time she only needed it for two hours and the nurse came back in shut it off to check her and it stay up so the oxygen was turned off.  When you spend a week seeing nurses take an hour to come in leaving you with a buzzing machine peircing your brain only to throw a mask on the patient and leave not to come in again till the morning, the change makes you have a deep respect for the way these new nurses cared for a floor full of kids.  The following day Lilly stayed off the oxygen even through a 4 hour nap so we were sent home, only a little more than 24 hours after being transferred.  There is not a doubt in my mind that had I listened to my gut and gone straight into childrens, Lilly would have been home within the initial 24-48 hours. 
 
I have spent years advocating for my kids against school systems, educators, insurance companies, exc.  but it never dawned on me that I know my kids health better than a doctor, till now!  I will never again let anyone tell me what my children need without feeling a sense of peace with the course of action again.  A mother’s bond is more powerful than anything, even a PHD!

How to Make your Own Weighted Blanket ~ Tutorial

When Early Intervention told me I should get Aidan a weighted blanket for his Sensory Processing Disorder, I had no idea what SPD was never mind a weighted blanket!

So what did I do….. Google!
BUT these lovely blankets that were supposed to make my dear little boy able to relax and stay still for a few moments cost over $200! Yes I would save every nickle and penney if need be to help this little cutie feel better, but really $200 for a few pieces of cloth and some stuffing? heck no!
I could feel the Martha in me coming out!

 

So I went over to Walmart to get the essentials:
The fabric was onsale for 75% off because they were discontinueing the fabric section of the store… Yippy!
1 Yard Dinosour Cotton Fabric: $.93
1 Yard Red Flannel: $1.04
2 Bags of Polyfil Pellets: $7.90
And to add some fleece fringe that Aidan loves to rub against his face
1/4 Yard Coordinating Fleece: $.67 the $200 blankets dont have this!
I got home and got to work as soon as the muchkins were in bed, all together it took me about 3 hours, but I have to say I am not an expert sewer and this machine has probably only sewn a hand full of times in the last year…. but I love that it embroiders 😉
So this is how to make one:
Cut off all the ends and lay out the fabric right sides together and smooth it out, then cut any extra that you may have.
Pin along three sides of the blanket, you will use ALOT of pins!
and sew up the three sides.

 

Trim the corners so that they wont bulk up, and turn the blanket right side out. flatten it out or iron it so that its easier to work with.
Now comes the fun part, Start by deciding how heavy you want it, how many squares you want. I used 10% of my sons weight but you should always check with your childs doctor to see what the best weight would be for them.
I had 15 squares. So I sewed 4 vertical lines from the open end of the blanket down as equally spaced apart as possible.
Next I got out the pellets, knowing I wanted 15 squares I divided the 4 pounds of pellets up equally into 4.3 ounces. try not to spill the pellets they are not the easiest to clean up! I know.. I poured the 4.3 ounces into each collum of the blanket, then smooshed them all the way down to the bottom of the blanket and sewed a horizontal line accross the blanket to keep the pellets in, creating squares. Becareful to get all the pellets down so that you dont sew over them and break your needle. Continue doing these steps all the way to the top of the blanket and close it up.

 

At this point the blanket could be done, but my little guy likes to rub soft things against the top of his lip to help him fall asleep, so I decided to add some soft fringe to the top. I took a fat strip of fleece and sewed it to the hem of the blanket and cut the fringe. easy peasy!
and the best part… Aidan loves it!

 

Great project and great blanket for cuddling:)
Enjoy!

 

Kisses!

Finding Out Aidan was on the Spectrum

It’s been 6 months since we found out Aidan was on the Autism Spectrum with PDD-NOS and it has felt like I have been on spin cycle every day ever since. I’ll never forget the morning he got the diagnosis, going in I was completely torn. I wanted a diagnosis, I mean I wanted to know what was wrong with my little guy BUT who would ever want something to be wrong with their child? At the same time feeling scared that another doctor was going to look at me like I was crazy and say “oh no he’s just a two year old”. Then we went through the test where the doctor asked me and his early intervention coordinator (yes she went to the appointment with me, she really is THE BEST!) a bunch of questions and then played with Aidan. At the end of the appointment she scored his results and told me she was diagnosing him with PDD-NOS. I fought back the tears even though I had anticipated the results; I hated to imagine what he was going through. The next few weeks were an emotional rollercoaster, Between being happy to have answers, sad that he had the diagnosis, and mad that it took so long to get it, I was feeling plain Crazy and since Hubby was working 18 hour days back then and didn’t really have any idea what Autism was I was feeling very lonely. But all these feeling soon passed because I quickly realized I didn’t have time to have a pity party I needed to find every way possible to help improve my sons condition! Right now Aidan receives services 5 days a week from different therapists, he has a speech therapist, developmental therapist, occupational therapist, autism therapist, and two floor time therapists. Luckily our insurance covers it all because we could never afford this type of care. My little guy is VERY busy but luckily he loves all of the wonderful ladies that come out to see him so he really enjoys it. These services have helped him so much there are days I look at him and think how could there possibly be anything wrong with him, this is all wrong…. Then he has a melt down or a really unregulated day and I am smacked back into reality. Yet no matter the struggles we have and will face I can’t say that I would change anything given the chance because he is hands down the funniest most loveable little boy I have ever loved!

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