Soldier's Wife, Crazy Life

Special Needs

Life As A Special Needs Mom

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In 2007, my almost three-year old boy was diagnosed with a developmental delay. We first realized something was going on when by 2.5 he was not saying a whole lot. He could say a handful of word such as “mama” or “ball”but he was not talking like the other 2.5 year olds we knew.

Life As A Special Needs MomI don’t remember being terribly upset about this. I knew that if we knew what was wrong it would be a lot easier to get him help. He started a developmental preschool right away. At age 5.5 when we moved to Tennessee he started extra speech therapy and started in a special needs Kindergarten class. The next year he repeated Kindergarten in a regular classroom.

He is now  9.5 and only needs a little bit of speech help at school. He dropped the DD label last April. They told us in 2007 that around 2nd grade he would probably be caught up. That is pretty much true. While he is by no means a “mature” 9.5 year old, he is right where he needs to be school wise. His special needs were very hard from ages 2.5-around 6. I remember trying to talk to my 5.5 year old boy about his day and he couldn’t have a conversation with me. It broke my heart, it really did. But now at 9.5, we can talk about most things. I will never forget those years.

I have friends whose children are very young who are just starting the speech process. I am glad that I can be there to support them as we have already gone through what they are about to. To let them know that their own child is going to be just fine.

In 2012, his brother who was 5 at the time, was diagnosed with Asperger’s. This was going to be a whole different special needs ball game. You don’t grow out of Asperger’s like you do a Developmental Delay. It is who my son is. Luckily we were able to start therapy with him right away.

It’s been two years and we have had so many ups and downs. He just finished the 1st grade and academically he is at the top of his class. Socially andbehaviorallywe have a long way to go. I have heard from Moms with kids with Asperger’s that it will get better. That he will figure out how to act, how to control his anger, that he won’t always expect to always get his own way. Some days it seems like we will never get there. I also have to remind myself that things are different for our little family. In some ways we can make life normal, in others we have to adjust a little bit.

That is one of the hardest parts about being a special needs parent. 

Being able to accept that the vision you had for your family, is not going to be your reality.

And it might be farther off that you could have ever dreamed. That situations you thought would be easy, become a big challenge. That you cry more than you thought you might. That some days you question what you did wrong to cause it, even if it had nothing to do with you. You can’t help it. Your mind just keeps turning, trying to make peace with it all.

And I remember that I am really not alone in all this. There are others going through what we go through, there are others that have it much worse. At the end of the day, I look at my little family and feel in my heart that everything is the way it is supposed to be. That being a special needs mom is just who I am. That some days it will be hard and others will be a little easier. That really, there is no such thing as normal. It is just a setting on the dryer 😉

 

Multiple Deployments Suck

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Multiple Deployments SuckI have been thinking about writing a post like this for a while. I want to try to put into words how I am feeling about our upcoming 4th deployment. Our 4th deployment since 2006. I have a lot of emotions when it comes to this deployment. It is interesting how different I feel this time. I felt a lot of fear right before our 3rd deployment. I just had such a horrible feeling about it. Luckily my husband went and came back without any injuries.

This upcoming deployment I don’t feel a lot of fear. Not the fear of him getting hurt or worse. I feel frustration and annoyance. I am worried that 9 months of solo parenting will change me. I know that might sound weird. All deployments change you. But this time I am just so worried that it will be so hard and frustrating that when he finally gets home, I will not be the happy Julie I once was. That I will be broken and way too burned out.

I have had people tell me after my husband gets back from a deployment that I look so much happier. That there is just something about my face that changes. I hate the thought of going through that dark period where I have a sad face.

I feel like I can’t give very much right now. I feel bad about that. I quit MOPS and I really don’t want to put myself out there for anything else. Last Wednesday was a very bad day. Very bad. My husband was in the field and my son got sent home from school early. All I could think about was that I would feel like that everyday for 9 months. Now that it is a week later, I can see that it was one bad day and not everyday will be like that. Still I hated that feeling and it just scares me to think that would be the norm for us.

Ever since my first deployment I have been praying for at least a two-year break. We still haven’t had that. When I thought my husband didn’t have to deploy, I was thinking we were finally going to get that. Nope. Not us. Not our family.

I guess I am just frustrated. Frustrated he has to go again.  Frustrated that it is our turn again. Frustrated that I have to handle a special needs kid all by myself. Frustrated with the way things are being handled.

And maybe once he leaves the frustration will lesson. Maybe it is just because we are in that horrible pre-deployment period of time.  It sucks you dry from all the different emotions you are feeling. Maybe once he leaves and we get into the routine of it, things will get better.

I remember when he left in February 2011. I needed to take the boys to get haircuts and it was the second day he had been gone. It was the first time I had ever taken all three out by myself. I was so scared. But after many days and then weeks and then months of doing that, it got a lot easier. What once seemed so scary to me was apart of my normal routine. I am hoping it will be the same way this time. That after he leaves and we get more used to it, it will feel better. That it won’t seem so frustrating and crazy. That is my hope.

The fact is, multiple deployments suck. And I can feel the weight of the last three pressing down on me. I need a break. I need a big long break from this.

And to be honest, writing all this out has been helpful.

Can anyone else relate?

 

 

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.

 

What is ABA therapy?

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Right after my son Drew was diagnosed with Asperger’s in January 2012, we received information about ABA therapy for him. Back then I really didn’t know a lot about it but I assumed it was something like what Max had in Parenthood. I wasn’t sure how it worked.  If we went somewhere for it or if they would just come to our home. We were able to start a few weeks after we got the diagnosis.

What is ABA therapy?

ABA stands for Applied Behavior Analysis.

According to Autism Speaks, Behavior analysis focuses on the principles that explain how learning takes place. Positive reinforcement is one such principle. When a behavior is followed by some sort of reward, the behavior is more likely to be repeated. Through decades of research, the field of behavior analysis has developed many techniques for increasing useful behaviors and reducing those that may cause harm or interfere with learning.

Applied behavior analysis (ABA) is the use of these techniques and principles to bring about meaningful and positive change in behavior.

As mentioned, behavior analysts began working with young children with autism and related disorders in the 1960s. Early techniques often involved adults directing most of the instruction. Some allowed the child to take the lead. Since that time, a wide variety of ABA techniques have been developed for building useful skills in learners with autism – from toddlers through adulthood.

These techniques can be used in structured situations such as a classroom lesson as well as in “everyday” situations such as family dinnertime or the neighborhood playground. Some ABA therapy sessions involve one-on-one interaction between the behavior analyst and the participant. Group instruction can likewise prove useful.

Asperger's

What has been our experience with ABA?

Drew has been in ABA therapy for 13 months now. When we first started he was only in preschool. They came to the house a couple of times a week and also went to school with him. He was attending a church preschool so we had to get their permission for them to be there. Luckily that wasn’t an issue and they let them in to help him learn how to act in school.

At the time Drew had a big problem with being told what and when to do things in the classroom. He had a very hard time playing with his peers and not throwing fits over every little thing.

Over the last 13 months we have worked with 4 different therapists/tutors. Last year he would go to school twice a week and then usually he would have a few hours after school with one of the ABA therapists.

When summertime hit we would see them about 4 times a week. Sometimes it was at home, sometimes out in the community. They even went to swim lessons with him. Sometimes they would come over and we would try to get him to ride his bike. Other times we would practice playing board games which he had a very hard time with at first. They use a reward systems so he is always working for something. If he gets so many stickers, he earns a prize. At first he would earn m&ms every few hours. Now he needs to earn six stickers throughout the day at school. If he does that he earns an Angry Birds Buck (we made this up) and if he gets a certain amount, he earns something of his choice. He can earn a trip to McDonald’s for five Angry Birds Bucks or work for 15-20 for a toy. This system works so well for him and he is so happy when he gets home from school if he had a good day.

These days I don’t see too much of the ABA therapists. Drew doesn’t see them as much anymore either. When he started school last fall we realized right away that he needed them there during the day. Now that it is March they are just on call with the teacher and might stop by during the day to check on him. They also meet with him at home once a week to go over school stuff and talk about the Angry Birds chart.

There have been difficult times where he was really upset and they helped me with him. They guided me about how I should act during a fit and I have always felt free to ask them any questions about Drew or what he is doing.

I am just amazed at how much Drew has changed since last February. We were in CA a week, lots of new situations and the only real meltdown he had was at the wedding. And this was understandable as the music became very loud and he was very tired. But that was after being at my parent’s house for a whole week already.  A big change from when we were visiting last summer.

School is getting much better for him too. We only have about 2.5 months left of the school year. I do worry about being out of school for the summer and starting first grade in the fall. I am glad we have such wonderful therapists that work with him. You can really see that everything they have done has paid off.

If your child has just been diagnosed and you are about to start ABA, I hope that I have given you an idea of what to expect.

 

 

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?