A Rainbow of Promise


 This past year has been one of the hardest years both because of my anxiety and my son’s disabilities.

 I had to go back on medication for my anxiety, all my previous coping skills I had learned weren’t working and neither were the supplements recommended by my naturopath. I have no guilt over being on medication. In my book, they are just part of my bag of tools to pull out and use when I need them. But it was a big setback for me.

I have children with special needs. I have a husband who is in Law Enforcement and in the National Guard. Both of his jobs at various and sometimes frequent intervals have necessitated me being the sole care provider while he is gone. I’ve struggled for years now with an Anxiety Disorder and Chronic Back Pain, which has led to two back surgeries. I have been exhausted. I was feeling like I was drowning and that I would always be in that place and could never have the energy to swim again to save myself. 

My sister asked me last year to go on a trip with her. I was determined to go, but extremely worried due to what had been going on with D. We decided to go to Ireland and Scotland a trip I’ve been dreaming of since I was about 5 years old. I decided this was something I had to do for me in spite of everything.

The very first day in Ireland we went to the Cliffs of Moher in Ireland (aka The Cliffs of Insanity if you are a fan of the movie Princess Bride, they also show up in one of the Harry Potter movies). As we got ready to go out on the boat to view the cliffs the sky got dark, the wind started blowing and the rain started falling. I wondered just how crazy this boat ride was going to get. We enjoyed a nice bouncy ride towards the cliffs. Suddenly, the sun came out, and a big beautiful rainbow appeared. As long as I live I don’t think I will ever forget that rainbow. It was as if God was saying to me, “Life can be really hard, awful and crappy, but life can also have truly magical moments like this rainbow and that’s what you need to hold on for.”

Several days later found me in Scotland on the shores of Loch Ness. A small rain shower came and quickly left and another rainbow came in it’s stead. Again, it was if God was saying, “Remember the first rainbow? I promise you will find those magical moments.”

What I Have Learned in 7 Years of IEP Meetings and Advocacy

It’s time for IEP end of year meetings! How do you make your’s go smoothly this year?As with most success, the key to a good IEP meeting is lots of preparation and it starts long before the day of the meeting. This is one meeting you are not going to want to just show up for.

Research– Know what you want, know your rights.

  • What do you want the end result of this meeting to be?
  • What goals do you have for your child, short term, and long term and how can the school help you achieve these goals? It isn’t just about their goals for your child.
  • Are they addressing all the concerns that you have for your child within the “school” realm?
  • Did you know you are a key member of the IEP team and are supposed to be a contributing member? This is your right. They cannot hold the meeting without you.
  • Did you know your child also is a member of the IEP meeting and has a right both to be there and speak up for themselves? (Age and maturity are a factor and the parent should decide when it is appropriate.)
  • Did you know you have a right (and should exercise that right) to review the tests, IEP draft, and other related documents before the meeting?
  • You have a right to have the meeting scheduled at YOUR convenience, not theirs.
  • You have a right to bring anyone you want to your meeting with you.
  • An IEP stands for Individualized Education Plan. Your IEP doesn’t have to fit another child’s mold or the school’s best interest. It is what is best for your individual child.
  • Know that if you do not agree with any part of the plan or findings- A) You do not and should not sign anything. If you do, you should write attendance only after your name. B) You have other options. You have 15 days after the meeting to write a letter to the Principal stating that you do not agree with the findings and are requesting an Independent Education Evaluation (IEE) and the school district is required to pay for it. You are not required to use their suggested doctor’s, therapists or educational testers either. C) Can’t agree on a plan? Table it. State that you would like to end this meeting and come back at another time when all parties have had time to think further about it.

Due diligence with paperwork– Mentioned above is the right to review the tests and draft IEP before the meeting, I usually request that I be given the draft IEP at a minimum of 48 hours before the meeting. Some people request them 2 weeks before the meeting. There are a couple of reasons for this.

  • Emotions- There are a lot of emotions wrapped up in testing scores. It can be SO disappointing to see in black and white on paper just how far behind your child is, or just how bad the behavior is. This gives you a chance to process all these emotions before the meeting. So that hopefully you won’t cry. Or at least not as much.
  • The draft copy gives you a window into their game plan. You can usually tell if they are going to deny something you have been pushing for, you can pick up inaccuracies, and get a feel for how they think your child is doing. This tells you what your game plan should be. Do you need to bring an expert to your meeting? Do you need to research laws and best practices as what they are doing aren’t in line with them? Do you need to spend time thinking of a way to get the things you feel your child needs so it is a win, win situation for everybody?

img_2049Dress for Sucess– IEP meetings can be VERY intimidating. You don’t necessarily have to go into the meeting looking your best, but you want to go into the meeting feeling empowered. Clothing, makeup, and accessories can help with that. For me when going to a meeting I tend to dress more professional. It makes me feel more together, someone worth listening too. A woman I know always wears boots to the meeting. She calls them her butt-kicking boots. Whatever makes you feel confident and empowered, that’s what you want.

img_2048Attitude– Frequently in these meetings, there is animosity, or there is the feeling of “you against them”. This is hard. But you want to walk in there letting go of everything, and be determined to find a win, win solution. Teachers and Principals really do want what’s best for your child too generally. Frequently they are hampered by administrations, money, not enough time in the day, and their own lives. Start by giving them the benefit of the doubt (even if it seems like they don’t deserve it), and try to bring ideas for solutions to the table. They will be much more willing to see your side of things if you do. And it’s been my experience that if I go in there expecting a fight I can usually guarantee I will get one.

img_2050Food– Bring food! Teachers are tired and hungry too. If you like to bake, bring some fresh baked muffins or cookies. Don’t cook? All local grocery stores have bakeries. This throws them off guard and if you do it more than once, makes them look forward to their meetings with you.

img_2051Take someone with you– Take a friend for moral support, someone to write down notes. Take an expert who has pertinent information. Take your spouse or significant other. Take someone. If it all goes south and hopefully it doesn’t, this is an additional person who can testify in court to what was said. You can fill the room with as many people as you need/want.

If I drank alcohol I would highly recommend it at several points along the process. Instead, take a deep breath (or multiple) and if need be, reschedule the meeting. You do not have to complete the meeting in one day. It can be several meetings if need be. Don’t let them pressure you saying that they will be out of compliance. If they waited this long to schedule the meeting, that is their fault. Not yours.

Filling the Autism Friendship Void

Since moving to the Seattle area D has been doing a lot of Medical Research Studies. (We don’t do any concerning medication but will do pretty much any other.) He loves doing them because he gets to make lots of money.

Recently as one of the researchers was interviewing me for my part in the study, she said, “I just wanted to mention that D said that when he doesn’t get his TV time he feels very lonely.” This stopped me in my tracks. I suddenly realized that for him, TV shows and movies were his friends, this is how he experiences friendship because he really doesn’t have any. He knows how to navigate those friendships. He knows what to expect of those friendships as they are the same every time.


I don’t know wether to feel happy or sad about this revelation. I’m happy for this glimpse into my son’s world and why watching video’s is so important for him. I’m happy that at least in some way he is experiencing friendship.

I’m sad because this is how he experiences friendship. I’m sad because he doesn’t know the joys of the give and take of a good relationship with a friend.

I’m left realizing that social skills groups are a must. That I need to continue making opportunities for him to find and make friends but possibly even more importantly to help him learn to navigate relationships.

Traveling with a Child with Special Needs

I was going to title this post, “Traveling with a Child with Autism”, and then I realized it is SO much more than Autism we deal with. Although many of the “other” diagnosis are common to children with Autism.

First, comes the prep. Prepping your child for the changes that are going to come. What things are going to be different? What fun exciting things are going to come to offset those different things? What is absolutely necessary to take?

 

Bottles of Saline, Castile Soap, and Glycerine for his nightly Cecostomy clean outs along with spare MicKey button in case we need to replace it. Pull ups and inserts for the entire trip plus some extra in case of a missed flight or sickness, a tarp for when he wets through literally everything because no one else has a hospital mattress they can just wipe down. Do I bring the nebulizer or try to squeeze by with just the inhaler for his asthma while we are gone? The load of prescription meds I need to remember to put in my purse and not the luggage in case it gets lost.  The service dog’s paraphernalia too… This is just medical supplies. I haven’t even started packing clothes yet.

Specific toys, books, and movies because we can’t guarantee they will be found where we are going and really no one wants to listen to the screaming that will ensue without said toys, books and movies. He ended up with the largest suitcase we have, stuffed with his stuff and half of his sister’s suitcase plus his backpack.

Helpful tip for other parents I learned this trip- If you put all the medical supplies in one bag without anything else in it, that bag is free on the airlines.

As we prepare for the flight I have to be very careful what I promise. Once I promised he would be able to sit next to the window. BIG mistake. We happened to have seats in the only row without a window. No one and I mean no one heard the safety instructions on that flight due to the meltdown that ensued.

.

 

R really gets the short end of the stick when we travel. Anytime we are on a plane with only 2 seats on a side, despite the fact that she is younger, she always has to sit across the aisle by the stranger. Going out to eat and her brother has a preference to where we should eat? Her brother will likely win because it will mean he will actually eat and we don’t have to listen to screaming that he is starving or he doesn’t like the food. Sometimes people with Autism will literally starve themselves rather than eat an offensive food. I do try to make it up to her when I can but I always feel like it is never enough.

Once there I will need to make a run to the grocery store to ensure he has the trifecta of food he will eat- Wheat Thin crackers, tomatoes, and pickles, to stave off the screaming when he doesn’t like or refuses to try the food we are having and is starving but nothing would induce him to put that piece of meat in his mouth.

Traveling with a child with Special Needs is not for the faint of heart. But in our case, it’s worth it for the opportunity to build relationships and stretch the ridged boundaries Autism places on our son.

A Day in the Life: Raising a Child with Autism

This post originally appeared on Living the Diagnosis which I guest posted on last year. With it being Autism awareness month, Autism is the topic here at An Ordinary Mom.


6:45 A.M.
The alarm goes off. I just want to stay in bed. Why can’t it be Saturday yet?? Time to wake the kids up. I wake my daughter, she smiles and jumps out of bed.  
My son is a different matter altogether. We will spend the next 2 hours coaxing, bribing, and sometimes physically pulling him out of bed and into the shower, as he has no intention of waking up for several hours, though he’s been in bed for 12 hours, so it’s not lack of sleep. By “we”, I mean myself and the caregiver who comes on weekdays to help with this. Some mornings it takes both of us.
My son has autism.
With autism there are frequently many other diagnosis’ that come along with it. My son has to shower because at the age of 9 he still wets through everything – pull up, an insert inside the pull up, and the water proof mattress pad. He’s really quite talented in this area, as I’ve worked with a lot of children as a former nanny, preschool teacher and sister to 10 siblings, so I know.  
Being a boy, and having sensory issues that come with autism – showers are not his thing. Most mornings he doesn’t get breakfast because he waits until the last possible second to take his shower and we are often late to school. We’ve offered every reward in the book and most of the time it doesn’t matter.
8:45 A.M. 
Last possible time to leave for school and still be on time. Some mornings we change it up and go to speech therapy instead! I spend 45 minutes in the waiting room so he can learn how to pronounce words, learn to read facial expressions, learn what things like idioms are because people with autism take everything literally.
Afterward I’ll spend the whole drive to school dealing with a meltdown because speech therapy is right next to the best doughnut place in town… and he wants doughnuts. Sometimes I give in rather than listening to him screaming and worrying he’ll kick my head as I drive. One time I thought it would be nice to get doughnuts after speech, and suddenly it is a part of our routine in his head.  
Change in routine can cause massive meltdowns. Children and adults with autism in meltdown mode can bang their heads or other body parts, screaming, inability to rationally think through problems and solutions and more. They can also react poorly to changes in stimuli, clothes that don’t fit right, loud (or loud to them) noises and many more things. It also can be different in length of time (instead of minutes it can be hours with a bad one) and intensity. 
10:00 – 2:45 P.M. 
On a good day I start dinner early so it will be ready when we get home later that night. 
Most days there are doctor appointments to make, paperwork to track down, and insurance companies to fight with. I spend a big part of my day on the phone trying to take care of all of it, usually a couple hours.  
This is really the only time I have to do any cleaning during the day. Also the only time I have for appointments for myself and sometimes (frequently) one of my son’s many doctor’s appointments happen during this time.  


Some days, frankly I’m tired and a nap or a favorite TV show might happen rather than the laundry or bathrooms that need to be cleaned.
2:45 P.M.
I have to pick the kids up early from school most days. This is so we can start the after school rounds of therapy. 
Occupational therapy (OT), physical therapy (PT), and counseling, each of them sometimes more than once a week. I spend a lot of time in waiting rooms. I’ve gotten to know a lot of other mom’s over the years as we compare diagnosis’ and treatments, share info on the best schools and ways to get help.
6 or 7 P.M.
Depending on the night, that’s when we get home. Dinner is a very rushed affair and I curse myself for not starting dinner earlier in the day if I haven’t already. 
Fast food creeps in far more than I would like.
7 P.M.
Another diagnosis my son has is chronic constipation. This frequently is an issue with autism for many different reasons. A couple years ago he had a cecostomy (a surgical opening into his cecum) and nightly, we flush his colon with various fluids. He has to sit on the toilet for about an hour each night. 
8 P.M. 
This is our last ditch target for bed. My son does not function well on less than 10-12 hours of sleep. I don’t do well without some time for myself and with my husband.
Our lives are crazy and wacky. Play time becomes social skills training while playing with other kids at OT.  
I spend a lot of time questioning if we are doing the right things. Should we try that therapy or this one? This medication or that one? At the end of the day I just pray it will all be worth it and he will be able to be the best version of himself and reach his potential.

Autism Awareness

This was written for my personal  Facebook page a couple years ago. It largely describes my feelings about Autism.

Today, April 2nd is World Autism Awareness Day. If you see random buildings lit up blue, this is why. I have mixed feelings about “celebrating” Autism Awareness Day. I love my son fiercely, as any mother loves her child. He makes me smile, he makes me laugh, he makes me cry, as any child does. I will be forever grateful for that.

1 in every 50 boys is diagnosed with autism and the numbers keep rising. Part of it is better diagnostic tools. Part of it, they just don’t know why. Autism has been a part of some of the greatest minds in history and that is a wonderful thing to point out, that these kids can succeed and can bring beautiful and wonderful things to our lives and to the world.


But autism isn’t pretty. It isn’t fun. When a child or adult can’t handle the sensory input from the world around him it causes meltdowns that they mostly have no control over. When they totally miss the social cues that you and I take for granted, friends are few if not impossible. No one comes to their birthday parties. I saw a number recently that only 28% of adults with autism are able to hold down jobs. That is a scary future. Divorce is extremely common in parents of any special needs child, and the stress that it places on them has been compared to that of a veteran in combat.

I will celebrate my son and the joy and the life that he brings, but I am not going to glorify or celebrate autism. I will be grateful for the things it has taught me and the way it has made me a better person. But Autism… It really stinks.

Tender Mercies

Tender mercies of the Lord have been my salvation time and time again. So many times my needs, prayed and unprayed for are answered by angels here every day.

Here are a few of my angels who have granted me tender mercies.

The Cashier at the Commissary  (military grocery store) who seeing my screaming children and knowing that my husband was deployed to Iraq, packaged my groceries in such a way that all the refrigerated and frozen foods were bagged together so I only had to get those specific bags out of the car when I got home. That way I could later retrieve the non perishable ones once my children had calmed down.

The woman in the Commissary (Seeing a theme here? It was years before my kids didn’t scream all the way through the grocery store.), who went and bought a package of animal crackers and then brought it to my screaming children. You didn’t judge. You didn’t make snide remarks. You didn’t give me unasked for advice (which wouldn’t have helped because D has autism and wellmeaning advice rarely works). You saw a need and you just helped.

The acquaintance who walked into the craft store and saw that D was having a massive autism meltdown as we checked out and you just walked up to me and hugged me. You didn’t say anything, you just walked away. You have no idea how much that meant to me.

A very dear friend who recognizing that I was dealing with severe anxiety attacks would show up and clean my house, and bring me dinner. She would also, despite having children of her own, take D as a baby and play with him during one of the meetings at church so that I got something out of the day.

Teachers who have gone out of their way time and time again to help my kids, make them feel special and that they are smart.

My husband who when I reach that wall and I cannot go any further, see’s it, picks up the pieces, pushes us forward while helping me into bed so I can face a new day.

These have been some of my angels. These have been my answers to prayers and I’m SO grateful to the Lord for granting me them.