I Feel Alone, Isolated

“I feel so alone and isolated.” I hear these words a lot from Special Needs parents. It is hard when family members do not understand. Friends don’t get it or push away. Spouses are not in agreement with diagnosis, treatment, or everyday care. You don’t have “you time” because your time is spent running your child to therapy and doctor appointments. It is not an easy journey.

The best piece of advice I was ever given was “find your people”. Find people that are in the same situation as you and reach out. No one can do this journey alone without support. There are people out there that get it. You can find them at the therapy office, doctor office, classroom, online blogs and social media.

There are people who have been there before that want to cry with you, hug you, and share their knowledge with you. After moving, I happened to just bump into someone that “got it” at my kids gymnastics class. Our kids were the only two kids not following the group. I don’t remember how we started talking about therapy and our kids, but it was so good to finally have a chance to share with someone with no judgment. She not only pointed me in the right direction of a great therapy clinic, but taught me about therapy funding and even helped me fill out paperwork. She was God sent at that moment because she was exactly what I needed at that time.

If you are feeling alone and isolated because the people around you just do not understand, know that I have prayed for you. I hope you reach out and find “your people” soon. And when you do find them, please be on the lookout for others who were in your shoes. They will need you too.

Super Mom

Today I was talking to one of my childhood friends whose child recently started her journey in the special needs world. After helping her map out a plan and giving her information I wish I would have had, she said to me, “Wow! You are like Super Mom. I just don’t know how you do it so perfectly with dignity and grace. It is hard enough with one, but you have two.”

I was totally taken back with this. I mean what a huge compliment. I never thought anyone would ever consider me a "Super Mom". Most of the time I feel like a “trying to keep it all together mom” because I really just take each day as it comes and make things happen.

As I thought more about what she said, it made me realize how many Super Moms and Dads I know of special needs kids:

·        The mom that is up all night with her child having multiple seizures

·        The dad that is feeding his child through a feeding tube

·        The mom that pushes her child around in a wheel chair

·        The dad trying to calm his child after the tenth meltdown that day

·        The mom that is trying another medication on her child praying that this one works

·        The dad that is taking his child to try a new treatment hoping that it makes a difference

 All of them are living in the moment trying to do their best for their child. I bet they wouldn’t put “Super” in front of their name either.

BUT, they are “SUPER”.

They spend hours each week in therapy with their child. They are regulars at the doctor’s office. They are very involved at the school in parent conferences, IEP and 504 meetings. They are constantly researching trying to find ways to help their child.

They are the strongest and most passionate parents I know. I think their children are pretty super too!

Things I Wish I Would Have Known About SPD

When my son was 16 months old, we started noticing a rapid decline in his words spoken and eye contact. We took him in for a therapy evaluation. After six months of therapy, he was re-evaluated. The therapist told me she wasn’t sure what was going on. She recommended us seeing an ENT to check to see if my son was hearing. The ENT recommended tubes. After my son got tubes, he started making more sounds, but continued to struggle with speaking, making eye contact and crossing midline. It was at that time that the therapist talked to me about PDD (Pervasive Developmental Disorder). Our doctor didn’t want my son to be diagnosed until three, so she had us put off testing. She wanted to give him time to develop. At three and four, he was screened for PDD (autism), and we were told it was not PDD, but Sensory Processing Disorder. At the time, I thought that was it, an answer. Here is what they didn’t tell me:

1.   Sensory Processing Disorder never stands alone. It is known to be a red flag for something else, such as: Autism, ADD/ADHD or anxiety. Children with SPD usually have developmental delays, feeding problems, and coordination trouble.

 

2.   Sensory Processing Disorder is not recognized by all as a medical diagnosis. Many dispute it being a real disorder, and believe that it is just a symptom of other disorders. Therefore, when a child is receiving therapy for sensory processing disorder, they are treated based upon their symptoms.  Learn as much as you can about what they are being treated for.

 

3.     It is important to narrow down the diagnosis, so your child can receive therapy centered towards their needs and possibly receive more services.

 

I wish I would have known about these things at the start of our journey. I think it would have helped when something else came up when I already thought I had all the answers. I hope this might help others who are just starting their journey.

The last thing that I wish I would have known about SPD is that it does get easier. With testing and therapy, your child's therapy plan will be more personalized to meet their needs. Over time, you will learn how to best help your child, and your child will develop ways to cope. Hang in there! You are doing a great job!

Blindfolded Motor Activities

One thing my kids struggle with is motor skills. Motor planning and coordination does not come easy to them. On Monday, one of our Occupational Therapist talked to be about using a blindfold to engage my kids other senses to increase motor skills. The kids thought it was super fun.

Here are some activities that we did using my sleeping mask (aka blindfold):

1.     Find the object game- Leaving one hand in the lap, use the other hand to reach across body to feel different objects in the bucket. Pull out the objects based on the commands: find something smooth, bumpy, soft, hard, slimy, big and small. Try it again with the other hand.

 

2.      Play a matching game- Place several pairs on the ground (such as: two small balls, two cubes, two triangles, two spoons). Have the child feel around for the pairs.

 

3.     Sort the objects game- Find two to three objects that the child can sort. Have the child feel the objects and sort them into containers.

 

4.     Carry it to the basket game: Clear the room. While giving the child directions, have the child do different movements (walk, crawl, skip) across the room to drop a ball in the basket.

 

5.     Walk the beam: Walk on a beam or a 2x4 piece of wood without a blindfold and then walk on it with a blindfold. You can attach textures to the beam such as sand paper, felt, or bubble wrap.

 

6.     Swing: Allow the child to swing with a blindfold on their eyes.

A Special Relationship

Yesterday, I saw an incredible video about a nonverbal child with Autism. The family had their child in therapy fifteen hours a week. They were trying everything to get their child to engage with them and talk. Through a sequence of events the family ended up adopting a dog. The family already had a dog and didn’t think anything about adding a second dog to the family. As soon as the dog came home with them the little boy started to change. He formed a special bond with the dog and was able to connect with the dog like no one else. Slowly over time, the boy started expressing himself through words and forming connections with other people. The family joked about the dog being the best therapy the boy has ever received.

The story brought me to tears. I remember too well the day my son lost language. I remember the months that he was nonverbal and praying for a miracle. I remember searching for anything and everything to help us out. Still to this day, I am so thankful that my son also gained his speech back and started connecting again to others. For my son, his sister has been a huge blessing in helping him connect. They have a special relationship like no other. I really believe that she has helped him grow socially. When he is with her, he is less anxious around crowds of people and more likely to talk to others. I am so thankful they have each other. I know their deep connection has helped my son form special connections with others as well.

One of his favorite people to be around is non-verbal; however, the little boy does say my son’s name. My son told me the other day that even though his friend doesn’t talk a lot, he knows what he is telling him. They understand each other.

 

Nothing warms a mommy’s heart more than hearing this! I am so delighted in the amazing progress he has made in this journey.  He is now making friends and connecting with others. There is something magical about watching your child bloom.

Helping Your Child Learn Sight Words

Helping your child connect to new information is hard. Recently we have been working a lot on sight words. I have tried everything to make the sight words stick. We have used:

1.      Visuals: We made a visual board of the sight words we have learned. We add one word a week and review previous words.

 

2.      Multi-sensory approach: When teaching the words we hear them, see them, touch them, and play games with them.

·         I have him hearing the sight words in songs, books, saying the flash card words aloud and repeating them.

·          I have him see the words highlighted in books, on flashcards, and in activities.

·         We touch them by drawing them in sand and shaving cream. We also write them in glue and sprinkle glitter on them. Once dry, we run our fingers over the words to spell them out.

·         We play games with the words by turning the flash cards over and picking one word at a time to say.

But, out of the twelve words on his wall, he gets eight right consistently. I want him to do better than this. So, I thought a lot about my child and his interest. One of his favorite things to do is watch shows. I thought I would try a sight word show to help engage him more with learning these words. I found an amazing program called, “Meet the Sight Words” by Preschool Prep. My son loved this program and is now learning his sight words twice as fast as he was with all the activities I was doing before.

If your child is having a hard time academically, try brainstorming what your child likes and form a connection from there. Hopefully, your child will then start making rapid progress like mine did.

 * Preschool Prep also has other programs that teach shapes, numbers, letters, and phonics. All programs come with a dvd and books. I highly recommend this program.

 

Helping Your Child Focus On What You Are Saying

One of our difficulties at our house is that my son will be looking at me when I am talking, but he will not hear me. He is zoned out or focused on something else other than my voice. Unfortunately, I am very familiar with this. I remember friends asking me if I heard them. My husband even sometimes says that he told me things that I just do not hear. So, yes, my son gets this from me!

Luckily, I know what works to help me focus or hear when someone is talking to me. These tips have worked with my son too.

1)       Touch- If you feel like your child is not listening, touch their arm. Touch automatically helps with focusing, so they can hear you better.

 

2)       Make eye contact- Get close to the child, move so you are on their level, and make sure they are really looking at you making eye contact. This will help them become aware of your presence.

 

3)       Form a hand signal- I use my fingers counting 1,2,3 while saying, “1,2,3 eyes on Mommy”.

 

4)       Create a visual- If asking your child to do something, create a visual of the tasks that you want them to complete. Make the visual simple with pictures or a few words.

 

5)       Take away distractions- If your child is having trouble focusing on you due to distraction like a video game, music, or television, turn them off or take them away. A quiet environment will help your child focus on what you are telling them.

Teaching your child these tips will help them learn how to be more intuitive to what is going on around them and the people talking to them. It will take practice, but it will really help them in the future with focusing and hearing what others are saying.

It Is Okay To Cry

It is okay to cry. I know this journey is rough, and it was not planned. I know that you feel alone and that no one understands. I know what others tell you:

§   You need to be tough for your child

§   You need to be thankful for what you have

§   It could always be worse

§   You are not given more than you can handle

I KNOW THAT THIS IS NOT WHAT YOU WANT TO HEAR.

I KNOW THAT YOU DON’T WANT TO WATCH YOUR CHILD STRUGGLE DAILY.

I KNOW. You want a hug. You want to be told that it will get easier and better. You want to see the light at the end of the tunnel. You want someone to say that they understand. You want someone to tell you it is okay to cry.

It is okay to cry. Crying is good for you. It can relieve stress and elevate your mood. It can help you release your feelings.

Crying means that you are human and at times, it is needed to survive. Don’t let anyone make you feel any less for needing a good cry.

You are doing the best you can. You are doing a good job. Here is a hug from a mom who understands.

Accepting a Diagnosis

One of the hardest parts of being a parent is to notice that your child is not developing like the typical child. It is equally as hard to get help and trust the professionals with evaluating your child and making an accurate diagnosis.

Yesterday, I was talking to a mom that was taking her child today for an evaluation and diagnosis. The last thing she said to me was, “Please pray for my heart, so I am open to receive my child’s diagnosis.”

 Being told your child has a disability can be traumatizing. Depending upon the severity or the diagnosis, your entire life and expectations for your child might change. You feel so many emotions of shock, denial, anger, anxiety, sadness, and fear of the future. You often asks questions like, “Why my child?” and even “Why me?” You want hope. You hope things will get easier soon. You want a time frame of when. You want people who will understand and walk beside you on this journey.

I will most definitely be praying for her. It wasn’t long ago that I was in her shoes.

Lord, please be with my friend whose child is being evaluated today. I pray, God, that her child may do her best so the evaluation will be accurate. Please be with the doctor and mother as the diagnosis is told. Help the mother be open to hear the diagnosis. Give her the strength and courage on the journey ahead. Please comfort her on the hard days and make your presence known- Amen

Transitioning After the Holidays

The ending of the holidays comes with a lot of change, and change can be rough on children with special needs.

·         The child’s environment will change as decorations all over the city, neighborhood, and house are put away.

·         The child’s schedule of late nights, sleep in mornings, and holiday activities will also be replaced with school and extracurricular activities

·         The child’s interactions will change as family and friends who were visiting return home.

All of this change can be too much and transitioning back to normal can be hard. Over the years several therapists have given us many ideas to help my child transition back into his normal routine:

1.      Prepare-Make visuals and discuss them daily. The best way to transition a child is to prepare them, so there are no surprises.

My son and I make a calendar for each month, and write all of our activities. Our calendar included winter break (highlighted in blue). It showed when visitors were coming and leaving. It also included dates the decorations were put up and taken down. Last, it showed when he went back to school. Every night we mark out a day and discuss our next day to prepare him of what is to come.

We also looked at visuals in back to school social stories. The social stories helped him remember the school routine.

2.      Practice/ Role Play- Days before the change, practice. Practice helps prepare the child for the change.

Three days before the returning to school, we tried to get back towards our normal schedule. We started bath time and bed time earlier and practiced waking up early in the morning to start our day. We then did some role playing to practice what to do at school. Practicing helped my son be prepared to wake up early on the first day back to school.

3.      Say Good-bye to the Holidays- Giving the child a chance to say good bye to the holidays can help with packing items up.

We schedule a party (Three Kings) to end our holiday. The kids know that after the party, we will listen to music while putting away decorations. Creating this routine was not always easy. After doing it for several years, my son knows what to expect. If this is too much for your child, consider putting a few objects away at a time, so the change isn’t too much.

 

4.      Distract- Create a distraction to help ease back to school jitters.

We allowed our son to bring two special objects (a fidget and a new pencil) to school the day he returned to ease his anxiety (talk to the teacher to make sure she/ he is on board). My son was so excited to get to school to try out his new pencil. We also told him that if he had a good day, he would be rewarded with a treat. I put a stamp of a cupcake on his hand to remind him that he would receive a treat if he had a good day and gave it his best.

5.      Stay Positive- It is important that the child hears you being positive about going back to school. If you are nervous about how the transition will go, your energy will transfer to your child.

Here are some positive things I told my son:

·         “You are going to have a great day.”

·         “You love school.”

·         “I bet your teacher misses you and can’t wait to see you.”

·         “I know your friends will be excited to see you.”

·         “You are going to have fun learning new things.”

 

I hope these tips help your child transition from the holidays. This year we are celebrating. It is our first perfect transition after the holidays. My son eased into our normal routine like a champ.  We are so proud of him.

Socialization- Sometimes It Takes Practice

For some kids socializing does not come easy. It can be a terrifying experience after rejection or not knowing where to start. As a parent, it can be really hard watching your child struggle, be rejected, or say that they do not have friends.

I remember a therapist comforting me one day after my son said he didn’t have any friends. She hugged me and said, “For some, socialization just takes a little practice.”

So, we started practicing. To help our children learn how to interact with others, we started :

1.      Going to a social group: The behavior specialist worked on guiding the children on how to interact (what to say and do)

2.      Enrolled the kids in preschool/ Mother’s Day Out so they could practice what they were learning with peers their age

3.      Started extra-curricular activities such as gymnastics, swimming, and soccer

4.      Went to playgrounds (outside and indoors at fast food restaurants)

In the beginning, it was hard.  The kids would hide or cover their ears and scream. Sometimes they would start stimming.

I learned that I needed to start this process off slow. I didn’t want to overwhelm them, but wanted them to have a successful experience. So, I would make sure that they were in small classes and at play areas on off times when only a few kids were there.

After really practicing socialization for a year and a half, my kids have learned to make friends in their Pre-school and Mothers Day Out programs. They have also learned how to tolerate noise levels at an indoor playground (Yes! We had a successful trip to Chickfila where they played on the playground with seven other kids in the room). Little by little, my little caterpillars are becoming social butterflies. I can’t wait for the day where they walk up to another child on the playground and interact/ invite them to play. I know it will bring tears to my eyes.

If your child is struggling with socialization, hang in there. It does get easier.  It might just take some practicing.  

Taking a Time-out Under Tables

I am the queen of manners. Growing up my mother was very firm about all of us having good manners. She even sent me to an etiquette school to learn manners. The first time my children crawled under the table at a restaurant, she was shocked that I wasn’t firm about teaching my children that was not the way to act. She had no idea that at one point I did try to teach them to stay in their seat.

So why did I give in?

I didn’t. I became aware.

My children were not crawling under the table to play or disobey. They were crawling under the table to ESCAPE and feel safe. I started noticing the times when they crawled under the table, several people were in the room, the noise level was loud, and there was a lot going on. They were in sensory overload. They crawl under the table to reorganize themselves until they felt safe.

As a mom, I always want my kids to feel comfortable and safe. How could I punish them or make them sit in an environment where they did not feel safe? Once I became aware of their needs, I allowed my kids to take a time out under the table when needed for sensory overload.

I know that it isn’t proper, but having the opportunity to take a time out is needed for my kids. We also started doing the following to help our kids with over-stimulation:

·        Go out during the off hours

·        Schedule with small familiar groups of people

·        Get a corner booth table in the back

·         Bring calming activities, headphones, and chewy sticks to help with anxiety

·        Bring blanket, coat, or hoodie that child can use for a time-out instead of crawling under the table

Sometimes as a special needs parent you have to take a step back and view things out of a different lens. One thing this journey has taught me is that things are not always what they seem to be. The child under the table is not defiant, but just in need of a break.