Soldier's Wife, Crazy Life

Special needs

Moms just know

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As a Mom, you know your kids. If your child had special needs that you didn’t find out about at birth or during your pregnancy, you will remember when you first started to think something was going on. Most likely it was before anyone else knew something was up.

Moms just know.

I knew when my 2.5 year old wasn’t talking that something was up, I was right, he had a developmental delay.

I knew something wasn’t right with my 3.5 year old. No he had never been in a childcare setting before but something wasn’t right.  He never grew out of some of the behaviors he should have.  I felt like nothing we did with him worked.  I was right, he had Asperger’s.

I have talked with other special needs parents and it seems that Moms, they just know. They always question it first. Husbands might ignore it. Doctors might brush it off as normal behavior, but a Mom always knows. And I know in some cases it is the Dad. I am not trying to say that only females have this kind of intuition but from what I have seen it is usually the Mom. Most of my friends stay at home with the kids while their husband is in the Military which I am sure has something to do with it. Moms are with the kids all the time and the Dads are away a lot of the time. My husband was deployed when I took my oldest son in for testing.

Moms know their children very well. We know how they eat, how they talk and how they sleep. We agonize over it before they are even born. We try to figure out the best way to handle the early years. As the child grows we start to wonder if something doesn’t seem quite right. We question ourselves. We ask our friends and our doctors.

I had brought up Drew’s issues twice with the regular doctor. They kinda brushed it off. But I knew and it took him going to regular preschool for me to make the call to be seen by a behavioral doctor. And I did this because I knew. Something wasn’t right. He wasn’t just getting used to school. He wasn’t just a normal four-year old. And I was right. Something was going on.

If you are a Mom or Dad and you are worried about your child, don’t give up on trying to figure out what is wrong. Deep down you know if something isn’t quite right. Trust your gut and keep asking questions. My experience is with Tricare. I called my son’s PCM and asked for a referral to the behavioral pediatrician. After a few months we finally got an appointment and started the process of figuring out what was going on. Sometime the process is hard and takes too long. That isn’t fair but keep at it. If no one is calling you back, you call them. Work hard to get the testing you think your child might need. It will be worth it in the end.

Do you have experience with feeling something was wrong with your child before anyone else did? Was it a struggle?

Since today is World Autism Awareness Day, I will be posting about Asperger’s, Autism and Special needs all week. Yesterday I talked about Accepting Autism.

Accepting Autism

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Accepting Autism

April 2nd is World Autism Awareness Day and April is Autism Awareness month.  My family will be participating in a walk later on this month.  I also plan to blog about Asperger’s and Autism this week.

When we found out Drew had Asperger’s in January of 2012, I was able to accept it pretty easily.  I had done my research and I knew that was what he probably had.  But when I thought about him having Asperger’s meaning that he had Autism…well that was a much harder label to accept.  For months I had a very hard time with it.

Autism…it can be a scary word.  When you find out you are pregnant, you worry about things and Autism is one of them.  You might wonder in the back of your head if the things you do for your baby will lead to it down the road.  It is scary to think about.  You don’t want anything to be wrong with your child.

But now, 15 months later, I can say I have pretty much accepted it.

My child had a form of Autism.  We have an Autistic child.

And that is okay.  It is not the end of the world.  It is not the worst thing that could happen to us.  Not even close.  It means having more patience.  It means having more struggles.  It means breaking down and crying and praying a little more often but it is not the end of the world.

School started out as a challenge but lately things have been going well.  Today is the first day back from Spring break so I am hoping he has a good day.  We will have summer break coming up and I hope it goes well and then hopefully we can have a good transition into first grade in the fall.

He doesn’t quite understand he has Asperger’s or Autism.  He does plan to wear blue tomorrow only because I told him to.  I am not sure when we will bring it up to him.  So far he hasn’t ask any questions.  He doesn’t wonder why he has people with him at school that other kids don’t.  He doesn’t question why he gets more frustrated about things than his brother does.  I think someday he will question it but it hasn’t happened yet.

Later this week I plan to blog about how Moms of special needs kids usually just know something was going on with their kids before the doctor did, my hopes and dreams for my son as he gets older, questions others might have about Asperger’s, and parenting a special needs child during a deployment.

Please let me know if you have any questions or topics you would like me to blog about.  I would be happy to answer them or talk about them in a future most.

 

A Mother’s Intuition

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Kathryn from Singing through the Rain is my next guest poster 🙂

A Mother's Intuition

When my son was born things were a little hazy. I had been in labor for 24 hours and things had been rough with a fourth degree tear. When I tried to breastfeed him, he was not latching on right. I was a new mother so I wasn’t sure how easy these things were supposed to be, but then things got more strange.

They told me my son was refusing to eat. He was happy and born healthy from what we could tell, but he did not want to eat. He was not hungry. How strange for a tiny new baby! Through many of hours of work and some amazing nurses they worked with my son to start eating. First with a tiny dropper, then with preemie bottles.

We kept trying to breastfeed and even had a consultant come and help me, but still we were having problems. I would cry in pain and I just knew something wasn’t right. When we got discharged from the hospital, his paperwork said “failure to get hungry.” He was eating more at this point, but still drinking from the preemie bottles. We used those preemie bottles for about a week or two, and worked on getting him to learn how to eat and suck on a bottle.

When we finally were able to switch him to regular bottles, he had a hard time with them. His tongue seemed to get in the way and he didn’t seem to know know how to suck on them. When we went for one of his first check-ups I talked about it with his pediatrician. I had done some research trying to figure out what was going on, and asked the doctor if he could be tongue-tied. The doctor told me with all certainty that there was nothing wrong and I felt silly for even asking. But in the back of my head I knew there was something wrong. I had babysit kids all my life and I had never had this much trouble feeding a baby!

Over the next few months things got better and my son Adam seemed to adjust to the bottles and how to feed. We switched to a new pediatrician who was wonderful. He was so helpful when my son was sick a lot and when he started to have multiple ear infections. When he finally told us it was time to start baby food, I was excited. I couldn’t wait to see Adam’s reaction to food!

Things were good for awhile, I started with green beans and worked on vegetables like he told me to, leaving fruits for last. When we finally started working on fruits, Adam refused them. I thought it was strange, but the doctor said it was ok as long as he was eating the vegetables.

Around 9 months when we switched to the next stage of baby food that had the chunks in it, something new happened. Adam started choking and gagging whenever I fed him. It was like he couldn’t handle the chunks in the baby food. I immediately went back to the stage 1 foods since that seemed easier for him to swallow. I figured he just wasn’t ready yet.

During this time, Adam started to have weight gain issues. Every visit to the pediatrician seemed to put him lower on the percentile chart. He even got as low as 3% for his weight! As a mom I was worried, but the doctor was monitoring it and told me that he was still gaining a little and was healthy. Around 12 months, Adam still was not eating any other foods except baby food and baby puffs. I had been keeping the doctor updated, and he finally agreed at this point that something was wrong.

That was when we referred to a feeding therapist. That was where it all started.

Once referred to a feeding therapist, we found out that Adam had very low muscle tone in his mouth, cheeks, and face. That was why he had never been able to latch on to breastfeed and why he had not been able to suck on bottle well. It was also why he was not able to chew food well and why he sometimes gagged and choked. It was so wonderful to finally get the answers to things we had always wondered about.

We also found out that he had sensory issues which was why he did not want to eat most foods. He could not tolerate most food textures and even other non-food textures. From there we were referred to an occupational therapist and they were able to start helping him with the a lot of the sensory and texture issues.

At his 18 month old well check-up we filled out the usual paperwork to see where Adam should be for his age. The doctor told me that he was concerned about his speech and also a few other things he was not doing yet. He said he wanted him to be tested for Autism. My heart sank. I could not believe this was happening. My husband was deployed and I was doing this all alone. I didn’t want to do it alone.

That day we were also referred to a speech therapist and we got Adam started on that as soon as we could. We were now in therapy 3 times a week: feeding, occupational and speech. Several months later I drove with a friend to Adam’s appointment with a specialist to get him tested for Autism.

I had filled out the paperwork beforehand, and was ready to hand it in. When we saw the doctor that day, he talked with Adam and played him, but he didn’t do any testing. He said that because he had “good eye contact” there was nothing wrong with him. I pointed out all his other issues with feeding and sensory, and he said that it was probably SPD (Sensory Processing Disorder), but he never gave us an official diagnosis.

I was so relieved that Adam wasn’t Autistic, but at the same time, I felt something was still wrong. I knew there had to be more going on. Over the next few months, things got worse. Adam had a lot of procedures done, and we saw so many specialists to try to figure out what was wrong.

My husband came home from deployment and we finally took my son to get re-tested by another specialist -a Psychologist this time. She was wonderful and after 3 interviews, several hours of testing and a book full of paperwork on the life story of my son, we had a diagnosis. The waiting was over, we were finally going to have answers.

In my heart I knew what it was. I had done the research and I just knew. And I was right. He was diagnosed with Autism and SPD (high functioning). In a way, we were so happy to get those answers, but in another way it was heart-breaking. It’s hard to have to watch your baby struggle his whole life and not be able to help him like you want to.

I tell you all this story to tell you this: there is nothing stronger than a mother’s intuition. I knew something wasn’t right, even when people told me I was wrong, or that I was crazy, or that I didn’t know what I was talking about. I just knew. I pushed and pushed until I got answers. Until my son was getting the help I knew he needed.

If you are worried about your child today and feel like something is just not right, don’t give up! Push, until you get answers and research as much as you can. Don’t ignore that intuition if you think something is wrong. Get help today. It can change your child’s life!

My son is now almost 3 years old and is in therapy up to 9 times a week. They tell me he has a good chance if we get him help now and I see so many improvements already. There is still a long road ahead, but I am so glad I listened to my intuition and got help for my son.

 

~Kathryn Sneed~

www.singingthroughtherain.net

PCSing with a Special Needs Child: Prepare, Plan and Pray!

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Since I am on vacation, I will be having a few people guest post about special needs. If you would like to guest post too…please contact me 🙂

PCSing with a Special Needs Child: Prepare, Plan and Pray!

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 A PCS is a normal part of any military family. It is also a very stressful, hectic and time-consuming process.   Add to the mix a child with special needs and it becomes a huge undertaking.

The normal routine is out the window. For most children and moms, this is not a big deal. They are able to transition from the everyday routine of one home into a new one at the next home. However, our children don’t usually fall into that category and thus our children and us are thrown into what I loving call organized chaos.

For my daughter, routine and consistency is paramount to being able to function and cope with her world. Sometimes, it doesn’t work perfectly but most days it makes the difference in her behavior, ability to regulate her own emotions without redirection, handle transitions and adjust to situations with more ease. Blondie has a pretty set schedule that she understands and is comfortable knowing what to expect every day. This, for the most part, makes it easier for us to help her through any changes or surprises that come up. After all, life isn’t scripted and we can’t expect it to go exactly as we plan or hope am I right moms?

Now, I’m beginning to consider “PCS” a four letter word, loll! Having a child that depends on and thrives with schedule, routine and limited distractions is complicated enough and throwing her into a complete routine /environment/location change is a daunting, intimidating thing (and I’m talking about for me). She, of course, is excited to be exploring a new place. I, on the other hand, know that this initial excitement will be replaced with a long list of feelings, anxiety and difficulty with adjustments as well as transition problems. I know we are looking at some level of regression when it comes to her ability or desire to regulate her emotions and behavior without redirection. I fully know to expect more meltdowns and increased need to have things perfect and heightened sensitivity to noise/fabrics/food/temperature, etc. She definitely seems to handle all of this much better when the day is planned and a normal repetitive schedule.

What can we do to make this PCS less hectic? 

  1.  Plan:
  • PCS Binder:  Organize all your PCS documents, housing information, past and future installation information, etc. into one binder.  Easily accessible and you can keep it with you at all times.
  • School:  Collect all current school records, IEPs, letters from teachers, etc. to pass along to the new school. Contact the new school ASAP and start to get to know the school, forward all current school info and ask for any forms that need to be completed for registration.
  • Medical: Get a personal copy of all medical records from your current location and make a binder for your child. (PCM, specialists, therapists, etc.).  Start to research new providers at the new location.  Contact them for info on waiting list, Tricare and other helpful information.
  • 2.   Prepare:
  • You:  Research as much as possible about all aspects of new location.  Try to have the majority of things in place prior to leaving (get on housing list, reserve temporary housing, have school physicals done, etc.) The less you have to do upon arrival will be a welcome relief.
  • Child: Start discussing the PCS as soon as it is official.  Plan a goodbye party for your child and their friends.  Share information on schools, available activities, sports and more that are available at the new place.  Downplay the negatives about moving but always validate and allow your child to share their emotions and thoughts on leaving as well as being “the new kid”.  Answer all their questions and share the new installation website with your child.  Show pictures and videos so that they know what to expect.
  • Trip: Plan for long car or airline trips.  Prepare games for the ride, snacks, entertainment and comfort.   Don’t rush the trip if you don’t have too.  Stopping at dark to rest, eat and relax will be good for EVERYONE.
  • 3. Pray:  Pray, hope, cross your fingers, etc. Nothing goes perfectly, plan for the unexpected and hope for the best!

 

 

Links: 

Ms. Mommyhh6   www.msmommyhh6.com

Facebook Page www.facebook.com/msmommyhh6

Twitter  www.twitter.com/msmommyhh6

 

526758_368205883241523_831390288_nRaven—AKA Ms. MommyHH6—is an Army wife of 10 years, mother of two beautiful little miracle girls, freelance writer, special needs advocate, avid book reader, social media/tech/Apple geek, and aspiring author. The focus on her blog Ms. MommyHH6 is moms, especially military moms, and special needs moms. Awards include “Top 25 Military Mom Blogs 2012 by Circle of Moms” and “Fort Lee Military Spouse of the Year 2013 by Military Spouse Magazine”.  Her writing has been featured on Care.com, Military OneSource, Homefront United Network, NextGen MilSpouse, Mom-Spot, Military Special Needs Network, Mom It Forward and more.

What I have learned about raising special needs children

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Asperger'sThis weekend we had a hard Asperger’s Day. Friday night he threw a three-hour fit. Luckily the next day he was rather calm and very pleasant. It seems to be the way it goes.

As I look back on Friday I have to ask myself what I could have done differently. I look at what choices I made that led to it. How it could have been prevented and what I can do in the future if a similar situation comes up.

I thought about what it is like to be a special needs parent. How life is just a little different when it comes to parenting special needs kids. How things don’t always go the way you want or the way you think they might go.

I thought I would talk about some of the things I have learned over the years about  raising special needs children…

  • Learn to pick your battles. This is a biggie. Although you want to be firm with your kids, sometimes you do have to pick your battles. If your kid is in a certain mood, everything is going to cause a problem so pick what is important and don’t worry about the rest. This was part of the issue on Friday. I should have just stuck to the major issue we were dealing with instead of expecting him to do more than that. If your kid only wants to wear his jacket like Batman does and getting on the bus is a big issue anyways, let it go. It really isn’t that big of a deal. Focus on the getting on the bus part. Don’t worry about the jacket.
  • Take time for yourself. You need it. When you feel like it is getting to where YOU need a timeout, take one. If you are the only adult in the house it might be a little harder to do this. You might need to just say, “You know, ME taking a timeout is more important than THIS battle.” If there is another adult in the house, have them take over for a while. Go take a bath, read a book or meet a friend for coffee.
  • Look at the big picture. Instead of thinking about the bad days, look back over the last few weeks or months and see how far your child has come. If it helps, ask a friend to remind you of this. They don’t see your kids everyday and can notice more of a difference. I know with my oldest I felt he would never really learn to talk. But then I would take to a friend who only saw him every few months and she would tell me how much better he was doing. It was hard for me to see since I was always with him. It helped to hear that others saw the progress even if I didn’t.
  • Find a good support group. This is so important. Find people who support you and your children. Find other families that might be going through similar issues. Knowing you are not alone and having support goes a very long way.  People who make life harder for you and your special needs children just aren’t worth it.
  • Don’t worry about what others might do. When it comes to special needs, you might have a lot of choices. Go with your gut here. What works for one kid with autism might not work for another. Talk to your doctors, therapists, school and your spouse to figure out what is best for YOUR child. If you feel your kid has a certain issue and people tell you not to worry but you can’t let it go, get it checked out anyway. I really think Moms know if something is going on with their children. Don’t doubt yourself.

Are you raising special needs children too? What would you add to this list?

What having a child with Asperger’s really means

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My son Drew was given the diagnoses of Asperger’s last January. We have known for a year that this is officially what he has. That it is why he acts the way he does, thinks the way he does and is the way he is.

Each day is different. Some days are okay, some days are happy, some days are sad, some days are way too difficult. Add having my husband gone for lengths of time and I get beyond stressed out sometimes.

What does having a child with Asperger’s really mean?

* That if your kid wakes up and something doesn’t feel right to him, you better take care of it before he leaves for school. If you don’t, it could ruin his whole day. The littlest thing could ruin his day. When my Mom came in late Wednesday night, I told her to wait in my room until he left for school Thursday morning and she could say hi to him after school. Why? Because if he saw her he might freak out and that would make for a horrible day at school. It isn’t that he doesn’t like Grandma, it is that she isn’t normally in our home in the mornings and it takes him a while to get used to her.

* That I worry about him all day at school. If I have a doctor’s appointment, I worry that I will have to leave it to go pick him up. I can never 100% relax. I would never feel comfortable leaving Clarksville during the school hours. The frustrating thing about this is over the last six months of school I have only had to go pick him up three times. Yet I still worry about it. I worry I will commit to something and then have to back out of it. A few weeks ago I was watching my friend’s daughters in the early afternoon but we had to set up a backup just in case.

* That regular parenting rules don’t always apply. I hear people talk. About kids who hit. Kids that don’t listen. Kids that need to be spanked. Makes me cringe sometimes. Because of the way Drew is, normal parenting rules simply don’t apply. He isn’t telling me no because we never discipline him. In fact, before we knew what was wrong, we explained it by feeling like he was a kid who had parents who gave him everything he ever wanted and never said no. When in reality we weren’t like that. It was extremely frustrating. I am finding that the older he gets, the more he understands that he isn’t going to get everything he wants right when he wants it. And then when he doesn’t, it isn’t the end of the world.

* That I am careful about who we hang out with. Not everyone is understanding. I need safe people. I need to hang out with people who can understand that sometimes Drew doesn’t act like a regular 6 year old. I am thankful that I have found a good support group here. At least for now. Being a Military community, everyone moves but for now, we have some amazing friends here at Ft. Campbell.

When you have a special needs child, you see the world a little differently. What was important to you as a new Mom, probably doesn’t matter much anymore. I know that over the years my son will learn more about how to act. This makes me feel good and gives me hope that he can live a normal life.

 

 

 

Asperger’s and Kindergarten

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Asperger’s and Kindergarten

I really feel like I need a vacation every single weekend. This is the third week of school I think and my son is having a hard time. This is normal and expected and I know this, but it doesn’t make it any easier for me.

Every morning once I get him on the bus, I burst into tears. It is always SO difficult. Then I hear how he is doing during the day through text or phone calls. The last couple of days haven’t been going as well. It is like he is realizing that this school this IS happening and not going away and he is going to fight against it as much as he can.

I am very very thankful that 1) We have an amazing ABA team working with him. 2) The school is really working with him. Excellent teacher and staff. I really think God made sure we bought a house for this school for a reason. THAT part of it is all working out.

I know how normal it is for an Asperger’s child to have trouble with changes in his life and this is a big change. Although he went to preschool last year, this Kindergarten thing is different and he has to go every single day. He was never a really clingy baby or toddler but lately he says he just wants to be with me. I went out for a walk last night and he flipped out. I think he is missing our time together. I can understand that and it is something a lot of new kindergarteners go through.

I struggle with thinking, “If Only…” about my life. I caught myself thinking, “If only he didn’t have Asperger’s. If only this wasn’t such a challenge for him.” and then I think about who he is and all the things he is and I get mad at myself for thinking that way. Yes Asperger’s is a hard and challenging thing to deal with but it is apart of who my son is. It will never go away and it just means he needs extra help with things like school. He doesn’t see the world like I do and that is hard. But he is a great little boy who loves Star Wars and Legos and playing with his brothers.

We were talking about what he wanted to be when he grew up last night. He told me he doesn’t want to be a soldier because the Army scares him. I told him he didn’t have to be a soldier just because his Daddy was. He could be anything he wanted to be. He decided he is going to grow up and invent new Legos. He already has a couple of great ideas. I told him that sounded like the perfect job for him.

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Even though deep down I know he is going to be okay and that he just needs more time to get use to school, my heart has a hard time with it. I feel sad that it is so hard for him. That he can’t just enjoy school like his brother does. That little things bother him. Things I might not even think could. And if I am honest I think I really just want everything to go smoothly. I want every day to be a good day for him. I don’t want to know he is at school during the day having a hard time. I cry a lot about this because I am his mom and really isn’t that what moms do? No matter what situation your kid is going through, if you are a mom and you know your child is having a hard time, you get upset about it.

My son will always have Asperger’s. Certain parts of life will always be hard for him. However, he won’t always have trouble getting on the bus. He won’t always have such a hard time at school. He will learn and figure things out. And I can be there for him. I can support him and make sure he is getting the best care that we can give him. Make sure he is getting the best tools he can be given to succeed.

I really have felt like a basket case lately and I am thankful that I have friends that support me and let me cry to them. This is a struggle but we can get through it. I know that we can.

 

 

 

Living with Asperger’s

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Living with Asperger’sIt’s been three months since Drew was diagnosed with Asperger’s. Asperger’s is considered a form of Autism. I have accepted Asperger’s but having a hard time with the phrase, “my son has autism.”

Most parents start hearing about Autism before their child is even born. There are a lot of theories on what causes it. A lot of debate. It is something I have always been afraid of on some level. I think a lot of parents wonder about it. But knowing your kid is considered “on the autism spectrum” is so hard. I guess because when I look at my son I don’t see Autism. I do see a smart and healthy child that has a lot more challenges in life than another 5-year-old might have. Things bother him and I can never wrap my head around why.

A fork falls on the floor and it is the end of the world. I offer him the wrong cereal or the wrong brand of tortillas. I forget to put a napkin in his lunch. His teacher is absent for the day. His brother isn’t playing with the Lego the “right” way. He can’t find the pink nose for the Mr. Potato Head.

Things have to be a certain way for him or it really is the end of the world. I have to remember that his mind thinks so differently than mine. I have to remember that certain things other kids grow out of by age 5 he is still working on. He won’t understand certain things on an emotional level. He will have to learn the “rules” for how to live in society. He will memorize them and then know how to act.

He has a very hard time with “no.” If he doesn’t get something he wants he will spend hours sometimes trying to find a loop-hole to get it. For example he really wanted some Legos at the store. He knew we were going to go to Target on Friday. I told him several times that we could look at the toys but we couldn’t buy toys. Well he tried to explain that Legos were not really toys. When that didn’t work he went on to tell me that I should just put “Legos” on my list since we were only going to buy what was on Mommy’s list. He is super smart and tries so hard to figure things out.

He is also very literal. If we have breakfast and then he asks for ice cream and I tell him, “You can’t have ice cream for breakfast.” He will tell me that he already had breakfast. What I needed to say was that we don’t have ice cream in the morning.

He starts Kindergarten in the fall. We had our first IEP with his new school a few weeks ago and I am very happy with the team who will be working with him. It makes me feel good that we are on the same page. I am worried about the first few weeks of school the most since that is when everything will be so new to him. He has a hard time with new environments sometimes.

I do love spending time with him. He is so creative, I love it! He inspires me in different ways and I love watching him figure things out. He talks a lot about what he knows and although a lot of it can be repetitive, it is nice to see him passionate about things.  Some days are pretty average, other days are pretty difficult and every once in a while they get pretty hard. I feel good about the help he is getting and it is helping me as well. Just taking one day at a time with it. I am worried about our next deployment and having to parent alone. I know I have done it before but I just feel like things are so different now. I know when the time comes I will be able to make it through but I worry thinking about it.

Just one day at a time…

“I know God will not give me anything I can’t handle. I just wish He didn’t trust me so much.” (Mother Teresa)