Persevering Momma

Taking The Day One Spoon At a Time

I’m That Anxious Mom

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Yes, I am that anxious mom. I’m just not the type of anxious mom that you’re probably thinking of. I am not one of those clingy moms that is worried about every little thing that’s has to do with my son. No, that’s not me.

I am a mom with anxiety.

I have battled with anxiety my whole life and have always found ways to push through it, but man being a parent is hard work!

My anxiety has never been as bad as it has been since I became a mom and today I am admitting it to the whole world.

Being a parent isn’t easy and more often than not it is very stressful. When I am stressed things get rough. That is when my anxiety flares and I start to lose it.

When my anxiety hits I can’t sleep and I’m always tired. I struggle to force myself to be active and interact with my son and the people around me. I tend to have a short fuse and often become very emotional. This all often leads to me not leaving the house. I become a homebody because it’s just too hard to function in the real world.

It’s a daily battle and some days are better than others.

In the past two years my anxiety has never fully gone away. Some days are significantly better than others while some days I struggle to get out of bed. Battling anxiety with a child is tough because it causes even more doubt and even more anxious thoughts.

I’m not depressed, but there are days when I feel like a failure because I back out of a play date for my son or because I just couldn’t sit and play with him like I wish I had one day.

Second Pregnancy Woes for the Disabled Mom

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Getting pregnant when you have a little one in the home can be a very exciting adventure, but as a disabled mom it does come with it’s own worries. While I have figured out ways to adapt and care for a child on my own (when I have to be alone); I haven’t figured out how to handle two children on a daily basis. There are many new fears that come with being pregnant and bringing another life into our family.

Caring for a toddler while pregnant.

The first big fear is casting for my three year old son as the pregnancy progresses. Will he step up and start climbing into his car seat without being lifted or will I still need to carry him? I know the third trimester is the hardest for me and during that time I’m afraid I’ll struggle to lift and carry him when it’s needed.

All I can hope for is that I can continue to do everything like normal and hope that on the days that I’m struggling my son will notice and help make things a little easier for me.

Traveling with Two Kids

I am not afraid of going anywhere when I have someone with me, but I’m afraid of what it will be like to get around with two little ones. Do I need a double stroller? Will my son cooperate when Baby is being held and he has to walk or ride in the cart?

I know most moms worry about these things, but I worry a little extra because I know I can’t chase down my toddler on a normal day and definitely won’t be able to do it with a baby in tow.

Bring on the new adventure!

Sometimes I Wish I Was a Normal Mom

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I love being me and most days I don’t really mind having a disability, but there are days where I really wish I was a normal mom.

There are days when I wish I could just pick up my son and carry him around like he wants.

There are days when I wish I didn’t get tired by noon because I was out running errands all morning.

There are days when I wish I could appreciate my son more and not be lost in the aches and pains I am constantly feeling.

There are days when I wish I didn’t have to ask strangers for help opening my toddlers snacks.

There are days when I wish I could run around and play with my son a lot more actively.

In the end I always love being a mom, but my jealousy sometimes gets the best of me. I know that every parent has their own battles that they suffer from, but it doesn’t really stop me from dreaming of what it would be like to be a normal mom that doesn’t have to work extra hard at caring for her son.

Momma loves you monkey and don’t you ever forget that!

Disabled Mom Turns Special Needs Mom

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I never thought the day would come when I would be writing to say that this disabled momma can now be categorized as a special needs mom. I have laid low this past year when it comes to talking about everything that we have been going through with our son, but I feel like I am finally confident enough to talk about it.

Disabled Mom Turns Special Needs Mom

The Diagnosis(es) that made me a Special Needs Mom

This all started at my son’s 2 year wellness visit with his pediatrician. I was concerned with his speech because even though he could say “Momma”, “dada”, “Mimi”, and a couple other words I felt like I was lucky if I got him to say 1 word a day. Some weeks it even felt like he would go days without saying anything other than baby babble and it really mad me sad because all of the other 2 year old cousins of his were saying so many more words and phrases than I could ever imagine him saying. And during that visit I was told that I was wrong. His pediatrician said that nothing was wrong. My son was normal and he said that I shouldn’t worry because all kids talk by the time they are in 2nd grade. (Cue eyeroll)

Using First Steps for help with developmental delays

Working with First Steps

I decided to ignore the pediatrician’s advice and scheduled an evaluation with First Steps for my son. I just knew something was wrong and it needed to be dealt with. They confirmed my suspicions and said that he qualified for Speech Therapy as well as Occupational Therapy. The problem that then arose was getting my pediatrician to sign on to these services. After weeks of trying to get him to sign on I decided to find a new pediatrician. Of course as I did this he finally signed the papers.

I started therapy with his consent and still changed over to the new pediatrician because I wasn’t happy with the results we were getting from him. No parent should have to fight as hard as I did just to get speech therapy. To give you a timeline we started this process in early March 2018 and didn’t get speech therapy until late April 2018.

My heart sank a little as we started speech therapy because we were in the middle of buying a house and the woman he was working with was about to leave on maternity leave. Those first weeks were hard. He just didn’t show any signs of improvement and he didn’t want to talk. But things changed after we moved; we were assigned a new therapist and that is when we started to see improvement. She was able to understand him and play off of him.

All the while we were trying to get Occupational Therapy started, but the move meant we were assigned a new case worker over at First Steps and it felt like I was pulling teeth to get her to do anything. It took me months to even get the paperwork sent over to my pediatrician and get therapy started. Ultimately I was given my old case worker and she got an OT sent over to us within the week.

This is when my son got diagnosed with Sensory Processing Disorder. This didn’t come as much of a shock as one would expect because when I did research I realized that this diagnosis is me to a T and I had been seeing signs that my son struggled the same way as me with many things.

Once OT began we saw many new things. Raiden was able to start calming himself and was learning how to self-soothe. This is something he could never do. It always broke my heart that he didn’t get attached to anything and couldn’t calm himself when he got upset and I never knew that the two things went hand in hand. After much work over the past months he is now also able to play with play-doh, touch water beads, and tolerate a small amount of sauce on his food without a complete meltdown.

Disabled Mom Turns Special Needs Mom

Moving on to special education pre-school

As Raiden gets closer to turning 3 we have been working on the process of transitioning out of First Steps and into a Special Education pre-school. This meant more evaluations, and another diagnosis of an overarching developmental delay.

We finally are moving forward and even though we haven’t completed our Case Meeting or the IEP, I am pretty sure he is going to qualify for the program and will be getting continued Speech Therapy at school as well as Physical Therapy. The PT might come to a bit of a shock to you all as he didn’t get PT services with First Steps, but we recently found out that he is hyper flexible and hyper mobile and is getting his first pair of UCBLs. PT is mainly a transitional and confidence boosting therapy for him as he is not confident on his feet and he will be relearning to walk with his UCBLs as he transitions into preschool.

It’s been a crazy year for us.

I still feel like the whirlwind hasn’t slowed down and am in shock with how last year turned out. 2018 was not what I expected it to be. I hadn’t expected to buy our first house and I hadn’t thought I’d be taking me to a million doctors and appointments like I had to go through as a child. I never thought that my son would be the child to turn me into a special needs mom. My only hope is that he handles all of this better than I did as a child.

I guess looking at myself now I realize I am already becoming a pretty good special needs mom because I am my son’s advocate and I have yet to back down and let myself get pushed around by any doctors, programs, or teachers. I will put that part of this into the books for record.

Read more of our continued crazy story here.

Continuing Physical Therapy From Home

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I have lived in and out of physical therapy office my entire life; it comes with the territory if you have a disease like Charcot Marie Tooth disease. Because of this I have learned how important it is to continue your treatment from home when you can’t because your insurance coverage ran out. While I am writing these tips especially for those of us who suffer from this disease I also would like to say that if you take these tips to heart they can really help anyone who needs to continue their physical therapy treatments.

physical therapy

 

Ask For a Physical Therapy Home Treatment Plan

The first thing you should do before ending your physical therapy is to ask for a home treatment plan. When you ask for something like this your therapist will do all that they can to make sure that you are prepared to continue working from home. This may consist of print outs of stretches and exercises to do while at home. They will show pictures as well as descriptions on how to do each stretch. Often your physical therapists will also provide you with some tools to use at home. In most offices this consists of various different Thera bands for you to use at home.

For instance my therapists have provided me with a variety of different bands to work up to using. They provided me with strengths that are too difficult for me to use now in hopes that I am able to use them one day as I get stronger.

Buy Therapy Tools to use at Home

I always find it great to look up the tools you use in therapy online because some of them might actually be reasonably priced so that you can buy them to use at home as well. For instance, I use spike balls in therapy and when I looked them up on Amazon I found out that I could buy them for around $5 a piece. I can afford to spend $10 to continue to work on my balance exercises from home.

While many items are just too pricey for me to purchase, like a foam therapy balance beam, I am still able to find a few other items that will help me at home. Another is small hand weights. I have a set of 2 lb. weights currently, but hope to need to purchase 3 lb. weights soon. I also am intending on buying a balance board. The ones I’ve found are a little different from the one I used in therapy, but I have a feeling this one will just be a bit more challenging and will help me with my balance even more for that reason.

Create a Routine

This may sound obvious, but it will really help. When you have a routine it will help you to remember to do everything just like you did in therapy. My plan is to create an exercise cycle that I go through. I always did everything in the same order at physical therapy so I figure I will keep that going at home as well. Another suggestion would be to decide how frequently you will do your routine. I am going to start at twice a week just like my therapy sessions were and slowly add more days until I am eventually working out most days of the week.

Don’t be afraid to do it on your own. You CAN do it!