Showing Up

As I reflect on the past year, I realize that I went from someone who watches TV to someone who appeared on TV.  Before this year, I casually volunteered when it didn’t interfere too much with my time.  Now I actively volunteer whenever I get the chance.  In a sense, activism has become my self care.

It began with the Women’s March.  I attended the local march here in Raleigh North Carolina.  It was whim.  I kinda wanted to go, so when a friend was also interested, I decided to go.  I think we decided to go maybe two days before the event.  It was mostly curiosity.  What I left with that foggy day was hope.

I left with a renewed view of the world.  A realization that all was not lost, and my desire to make the world a better place for my child and others was a shared goal with thousands if not millions of people across the country.  I just needed to do my small part.

Thus when a robo-call came out to gather those interested in organizing a precinct, I showed up at a meeting.  I learned a valuable lesson, sometimes all it takes is showing up.  It took more than one meeting, but eventually my precinct became fully organized with me as the chair. Again all l I really did was show up.

I also learned of a pending educational crisis in my state in March.  There is nothing on earth to me more important than the quality of my child’s education.  I kept up the simple concept of just show up.  I ended up a postcard party.  We sent postcards to our senators to try and get a bill called HB 13 out of committee.  The bill wasn’t perfect, but it was much better than the unfunded mandate originally proposed.

This wonderful group of local PTA mom’s later organized a rally.  When not a lot of people seemed to volunteering to speak, I decided to speak up.  I knew the drill, make it personal, so I just stood up there and talked about my fears for my son if HB 13 didn’t pass.  It was nerve racking, and scary, but fulfilling.  I did a good enough job, that I was asked to speak again for a bunch of teachers who were giving a press conference weeks later.

The experience was eye opening.  I discovered that a personal story can make a difference.  I was able to connect to new people who also were autism moms.  It gave me a sense of belonging even if it was over social media.  I also learned that despite passion, some battles are lost.  You get up and try again.

I’m still fighting for public education in North Carolina.  I’m still speaking and organizing.  I’m still trying, because the struggle is important.  All I need now is more people to show up.

I went to lots of meetings this year.  I actively helped out in a minor municipal election.  I lobbied my legislature for a promise to fund our music, art, and P.E.   I listened to other wonderful speakers on public education and cheered them on. I was even interviewed on local TV to try and bring awareness to the class size issue.  I showed up.

So in the new year, if you’re sitting on the sidelines, just remember all you have to do is show up. If you live in North Carolina join us for the Rally to End Class Size Chaos.   You don’t have to do much, just show up!

There is no better feeling than knowing you’re helping your child.  It is a very special type of self care.  Knowing that just by showing up, you can make a difference in the life of your child or another, is better than any pedicure or spa day.  So join me in a bit of self care and show up.

 

 

 

 

 

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The North Carolina Senate Has Rock Brain

What is Rock Brain?  Why do I think the NC Senate has it?  How do we get rid of it?

All valid questions.  Let’s start with the first.  Rock Brain is a character in a social thinking curriculum called Superflex.  Its a superhero take on social problem solving targeted at neurodiverse kids.  Its actually has really great problem solving advice for all ages.   Rock Brain is a villain in the Superflex series.  According to the Superflex series, Rock Brain is when a person will do only what he has decided he will do; he will not negotiate with other people.  He is not a good problem solver and tries one solution that’s not working over and over again.   This person may be rule-bound and rigid in his thinking, seeing only one way to a situation.  Rock Brain invades a kid’s brain and causes them to think only of themselves and never about others.

The North Carolina Senate has Rock Brain.  They are stuck on their class size mandate and will not negotiate even when others have told them it’s not working.  While the NC House has come up a compromise bill, the state senate refuses to budge.  Voices from the community have asked for hardship waivers for counties not able to meet the mandate. The NC Senate does not budge.  A few senate members who are obviously using their Superflex powers have devised tax plans that would at least pay for the mandate.  Still the majority of the NC Senate does not budge.

Rock Brain has clearly invaded the minds of our senators.  How do we help them rid this menace?  First, the senators need to be calm.  I suggest three very deep breaths.  They might need a quiet room to compose themselves.  For senators who are fidgety or sensory seekers, I suggest vigorous exercise or possibly yoga.  Next, they need to admit that Rock Brain has invaded.  They need to notice that what they are doing is not working.   They need to try another way.  They need to realize that they might not always get their way.  We can help by letting them know that class size mandate is not working for the citizen’s of North Carolina.  I’m afraid the rest is up to them.  If in fact they can’t get rid of Rock Brain there is only one solution left.  Any NC senator with Rock Brain must be voted out.

My many thanks Senator Jay Chaudhuri for using his Superflex powers.  We need more like you.

Click here for more information on the fabulous Social Thinking Curriculum Superflex.

 

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Sensory Inclusion at PNC Arena

PNC Arena, Carolina Hurricanes Announce New Sensory Inclusion Initiative

I was so thrilled when I read about this.  My family got a chance to take if all for a spin  at a  Sunday evening hockey game.  Here is a bit of my experience.

First, check in with guest services.  Guest Services is located in section 127.  They have the information about what accommodations are available and the sensory bags for check out.  They hold your license while you are in possession of the bag.  We asked about the quiet room that I saw advertised in their press release.

 

The staff said that the quiet room was located on the 4th floor.  They also stated that to gain access one had to have an escort from Guest Services.  Now our seats were located in the 300 section so this didn’t seem like an ideal solution.  The staff and Guest Services also mentioned a nice alternative to the quiet room.  They would allow guests needing a break to step outside.  Normally reentry is not allowed, but they said they could make exceptions.

Once at our seats we got to inspect the sensory bag.  Inside the sensory bag is a feelings chart that you may or may not find helpful.  There was a little red squishy stress ball that my son really liked.  Also included were other fidgets including a little marble you could manipulate in a little mesh bag.  My son really enjoyed the fidgets and found the bag to be very useful.

The sensory bag also came with noise canceling headphones.  My son quickly tried on the headphones and then just as quickly abandoned them.  My son is actually a sensory seeker.  In many ways he loves the noise and the blinking lights.  It also can go too far and he can become overstimulated easily.  He also has noises he likes and noises he doesn’t.  He likes yelling “Let’s go Canes” with the crowd, but hates the noises of public bathrooms.

In fact, late in the 2nd period my son began to get overstimulated and really twitchy. It didn’t help matters that he had junk food and sugar. It’s hard to avoid junk food and sugar at a game.  He said he didn’t want the quiet room so we did what works for us.  We took a walk.  We walked around the outside of our upper section as I tried to catch the game on the TV screens set up around the vendor lines.  It worked, and shortly my son was back to happily playing with fidgets and watching the rest of the game.

I never did get to see the quiet room.  I also wrote the PNC arena a few times asking for a photo.  It would be nice and possibly comforting to know where it actually was located and what it looked like inside.  I honestly don’t like that the quiet room required a Guest Service escort.  When my son is on the verge of a meltdown, he can be very frightened of strangers.  Also to have to trek to one floor only to go to another, is not ideal when one is dysregulated.  It should be easy to get to a quiet area and not difficult.  A staff member near the area should be able to let families in without a march to Guest Services.  Also, I can see my son thinking he’s in trouble if he is being escorted somewhere.  No one should be made to feel uncomfortable, just so they can have a minute or so of quiet.

I did indeed turn back in the sensory bag and my license was kindly returned.  They did reassure me that everything in the bag was to be washed.  All in all, it was success, and I’m anxious to hear from someone who actually used the quiet room. Guest Services said it was TV free.  If I go again, I will also verify the policy on stepping outside.  I would hate to step outside only to get a gate guard to say he knew nothing of such policy.

I’m so proud of my hometown hockey team!  Thank you Carolina Hurricanes for making it that much easier for my family to attend a game. I love going to hockey games and I hope to carry on the tradition.

NEW UPDATE!

After tagging PNC Arena in a Tweet about my blog, I was thrilled to find out that they read my little review of their program!  I was direct messaged by Lindsey Hall, the marketing coordinator for PNC Arena, and then called on Monday by Kim Jenkins the customer care coordinator.

I was thanked for bringing awareness to the inclusion project, but we primarily talked about the quiet room.  They did confirm that the quiet room is located on the 4th floor.  The fourth floor I found out is their executive offices.  That indeed explains why they have an escort.  They also admitted that the room changes based on availability.  That is why they didn’t advertise it with photos.

The good news is that they are working on a permanent home for the quiet room that is more accessible to all!  I can’t wait to see it for myself.

My thanks to the staff at PNC Arena for creating a dialogue.   I am thrilled about the sensory inclusion project.  They are always happy to hear from others so be sure to let them know your own experiences!  Keep up the good work PNC Arena!

 

 

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Class Size Chaos

I actually agonized over writing about this subject in my blog.  I advocate for public schools.  I also started this blog to write about my experiences as a parent of a child with special needs. I wasn’t sure if this was the proper place to do both.  I don’t have the luxury of being picky.  The crisis in North Carolina public schools is too great, and all the voices in my head won’t shut up.  Don’t worry, I’ll be back to complaining about IEP meetings in no time.

   What is the class size mandate in North Carolina

In a budget bill back in 2016, a class size mandate was given to all public schools.  Thanks to the efforts of activists, teachers, parents, students, and everyday citizens the mandate was phased in and delayed.  However, starting the school year 2018-2019 the mandate will be in full effect.  The mandate will put a cap on all Kindergarten through 3rd grade classes in public schools.  The caps are as follows: Kindergarten 18, 1st grade 16, 2nd and 3rd grades 17.

So, why the righteous indignation?

Despite warnings at the time, the impact of the mandate has several negative effects.  It limits schools flexibility in spending.  This flexibility allows schools to fund music, art and physical education teachers.   There is a teacher shortage in our state and it is significantly worse in the rural areas.  With a rising need of more k-3 classrooms, that teacher shortage can only get worse.  There is a space issue.  If your school is full, where do you put more k-3 classrooms?  Resources may be shifted.   To meet the class size for k-3 cap, schools may increase class size in 4th and 5th.  They may shift resources from middle and high schools, or even cancel much needed public pre-k programs.

Dealing with the poop

Raising a special needs kid means that small problems can have a large impact.  Class size mandate is a large problem with an even larger impact for kids with disabilities.  When resources get shifted, that means resources like teaching assistants get shifted away from my child.  With less help in the classroom, regardless of class size, there is potential for meltdowns.

No one wants a meltdown.  They can cause harm to my child, the classroom, or in extreme cases another child.  Its nothing like on TV.  I wish my child was a savant whose only trouble was relating to others.  Luckily the school has learned to do a great job of preventing meltdowns in the first place.  My son has an individual education plan or IEP.  Some days our behavior is above and beyond and others my son hangs by a thread.

My son’s best days are days he has specials.  It’s not just the teachers, although knowledge of their craft is imperative.  Its also the learning space.  For many kids on the spectrum, space is important.  Classrooms can be stressful and the simple act of leaving one can help alleviate anxiety.  The loss of specials teachers and their classrooms is terrible for any child, but kids on the spectrum feel it a little deeper.  They often feel everything a little deeper.  Spectrum kids crave specials not just for the instruction but for the stress relief those subjects provide.

My biggest fear is what we’re already seeing as schools try to adapt to the mandate.  Fourth and fifth grades are gaining in numbers.  This scares me because as upper grades have more kids and no TAs, I’m not confident they can meet the needs and demands of my son IEP.  This is about the quality of my son’s education.  This about helping him grow his emotional intelligence.  Ultimately its about federal law.

There are many struggles for special needs families.  Class size mandated doesn’t need to be one.  It can be fixed.  I encourage anyone reading this to get involved.  Contact me.  Contact your local PTA or PTO.  Find out what is going on in your area.  Call your state senator or representative.  Together we can all make a difference.

Want more fact filled information?  Check out this article from the NC Justice Center

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Happy, Healthy, and Well Adjusted

During my first IEP meeting I was asked what were my goals for my son.  I answered that I wanted E to be happy, healthy and well adjusted.  It was what I could I could think of on the spot.  A few years later, its still in the document.

My biggest struggle in the beginning of my parental journey was keeping my head while so many voices wanted my attention.  There was expert advice that proved to be awful.  There were bad ideas from administrators. There were even teachers who disregarded me entirely.

My point is there are a lot of opinions on where your child should be at different levels and as a special needs parent its important sometimes to tune out the negative noise.  Although many, many will tell you that you are your child’s best advocate, they still may push things that you believe are harmful to your child.    In fact, I remember a meeting at my child’s old preschool where the phrase “you are your child’s best advocate” sounded about as sincere as a southern saying bless your heart.

The noise may also be repetitious.  Even though I informed my son’s preschool that E was in both developmental and speech therapy, I would get pulled aside at pickup.  I would be informed of all the things E was not doing yet.  If I wasn’t seeking therapy that would be helpful,  but the developmental therapist actually held sessions in class.

I’ve had a special education expert put Legos on a list of things to help E calm down.  This might make sense for other kids, but my son is actually not a big fan of Legos.  I’ve had to be that parent more times than I’ve wished.

The worst noise comes to me through the internet.  They all have titles like, “End Meltdowns Forever”, “Cure Picking Eating in just a Weekend”, or “No More Whining.”   The hyperbole is ridiculous.  They even sometimes come with good advice, but none of those steps are instantaneous.  These are skills and struggles that with all things take time.

The good thing is that as many negative voices, I’ve also met some very positive ones along the way as well.  Hold onto good OTs, therapists and reward the teachers that listen.  If someone is not helping then you don’t have to stay with them.  I don’t go back to a hair stylist that gives me a bad haircut.  Well maybe one more time just to give them a second chance.  Still, trust yourself as the expert on your child.

I have no doubt that my child will be able to succeed.  The journey probably won’t look anything like the neighbor’s next door.  I’m Ok with that.  We’ll keep working on improving.  I have no idea if E wants to be a teacher or an astronaut, but as long as in the end my son is happy, healthy, and well adjusted we’ll be fine.

 

 

 

 

 

 

 

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Why I didn’t Join the PTA

There are many reasons why people join the PTA.  This is my story.

I stood in the middle of a narrow hallway after the orientation meeting, as a crowd of parents swarmed and moved around me.  Nothing resonated in my ears at that moment, but my own fears and the fierce beating of my heart.  My son can’t do this, I thought over and over again.  He’s going to fail.  What am I going to do?

My feet, under their own mysterious propulsion, began to move me forward with the last stragglers from the orientation meeting.  I began to look around for help.  I was not going down without a fight.  The special education staff were surrounded with parents who needed an IEP or assessments.  I had both, but after the kindergarten orientation meeting I could see now that my IEP was woefully inadequate.  There was no way I was going to be able to talk to any of the special education staff.  How was I going to fix the problem?

The guidance counselor stood near the exit doors and noticed my panic stricken demeanor.  She asked if everything was okay.  I honestly answered, “No, I’m not okay.”  She tried to reassure me that everything would be fine.  In a shaky voice, I asked simply, “What if it isn’t?  I don’t think my son can do this.  I need help.”  I also told her that my son was on the autism spectrum and  I was deeply worried about him.  While she never physically touched me, I felt her answer as a patronizing pat on the back.  Again and again, I was told that everything was going to be okay.  She saw me as just another anxious mom.  I can still hear the words, “Everything will just work out fine.”  In my head, I wanted to scream, What if its not fine?  Instead, I slinked back home with a giant weight on my heart.

I was right.  Everything was not fine. Kindergarten was the hardest challenge yet for my son.  Before kindergarten, many people couldn’t even tell my son was on the autism spectrum.   Within the first week of kindergarten, my son began to have his first truly violent meltdowns.  He spit, he kicked, he hit himself and others.  That first week, I got a frightening call that a vice principal had held my son down to restrain him.

I was outraged.  I was shocked.  I was also ashamed.  I was a good student.  My husband was a good student.  We got good grades. I was teased for a being teacher’s pet.  This couldn’t be our son.  There were few people I felt I could tell about my issues.  My friends may not have all been honor students, but they certainly never visited the principal’s office for bad behavior reasons.  The shame of parenting failure consumed me that year.

I didn’t want to pick up the phone when I saw it was the school calling.  I didn’t want to join the PTA with all those parents with happy well adjusted kids.  I didn’t even want to step my foot into the school if I could help it.  To me, the PTA symbolized good parents with healthy well adjusted children.  My son was not typical, and I felt he was anything but well adjusted.  I didn’t want to run into parents who had heard stories about E’s latest meltdown.  I didn’t want to run into teachers or administrators.

Because my son had never had long violent meltdowns, there was so much I didn’t understand.  It was only after E began having meltdowns, and exhibiting those behaviors at home, did I began to understand the scope of the problem.  This was autism and there were things we could do to improve the situation.

I am thankful for a family therapist and a supportive husband.  I was thankful that despite the fact that E’s teacher was green and new to teaching her own classroom, she was willing to learn.  Not that I didn’t think about leaving the school and perusing other options.  Still, as a family, we persevered.

I slowly came to realize that the only parent that was truly judging me was me.  I had to get over my own self.  I had to accept E as he was.  I had to get over my own perceived notions of childhood.  I had to help E, and not hide in a corner behind a large potted plant.

I also finally joined the PTA.  At first, I paid my dues and did little else.  I volunteered, but my focus was on my own child.  I filled gaps when no one else could help.  I was on the outside and rarely bothered to look in.  They just raised money right?

My moment of truth came in the form of advocacy.  I found out that PTA moms advocate for children.  They rally, they petition, they go to the legislature and speak up on behalf of kids.  As I watched parents in my county organize, I knew I had to speak up for my public school, and for kids on the spectrum.  Fighting for our kids is what special needs moms do best.  To help make E’s experience at school better, I had to do something and speak out.

I still cringe when my kid throws a rock or rips up his work in defiance.  I still see a family therapist.  I still judge myself as a parent. However, most of all, I still advocate on behalf of the PTA,  for all those misunderstood kids on the autism spectrum, and all those parents who dread walking through the doors of their school.

 

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Operation ReBoot

I apologize. I let this blog become idle. It has sat, while my son grew and developed. He is now officially diagnosed on the Autism Spectrum.  I’m not going to go all the way back and try and make up for lost time. I am going to fill in some blanks as I go forward.

Thank you for your patience

More coming very soon

 

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The Soccer Tots Disaster

After E’s second birthday, we settled into a bit of routine.  I tried my best to have play-dates despite E’s resistance.  I also looked into group activities.  From the time E was 9 months old, we were actively involved in KinderMusik.  I wanted to see if there was an equivalent for sports.  I thought I found it, Soccer Tots.

Soccer Tots is an introduction to soccer held at a local indoor arena.  I thought it sounded very cool.  I loved soccer as a kid.  That might be putting it lightly.  I lived for every minute I got to play.  I wanted to share this joy with E.  In the back of my head, I did wonder if age 2 was too young for this, but I trusted that the program was equipped for kids’ E’s age.

I first only agreed to a trial class.   E was a mess.  It was way too much fun to just run around the indoor field as fast as his little legs could carry.  He tuned out the world, and joyfully ran as if he was the only one there.  Of course he wasn’t alone, and I was frustrated.

I so wanted this to work.  I ignored the fact that my child wasn’t participating.  I totally bought the lines of the coach that my child would get it.  All the signs to get out before I got in too deep were there.  However, my own pride and love and soccer overruled my common sense.

I signed E up for a session.  It was soon after that I noticed he was limping.  It was noticeable for the speech therapist, and our babysitter noticed, too.  I was a little worried, but suspected that he had ran too hard at “practice”.   I took him to the doctor.

E likes to go to the doctor.  We take our little play doctor kit, and he generally thinks its fun. This is the advantage of being old enough not to need a shot every time we go.  At this point in his life, he hadn’t even needed a prescription for anything.  Doctor’s gave tickles, hugs, and stickers at the end.

The doctor had him walk around and agreed with me that it was probably just over-use. The doctor also noticed E’s propping himself while sitting on one hand.  E also used his hands to help him stand.  This worried the doctor and I got a referral to a Neurologist.

I should have asked more questions, but I sometimes become idle brained in a doctor’s office.  Why a neurologist?  Is propping that bad?  Is it only the propping that concerns you?  All valid questions, but all unasked.

The limp went away.  It was sore muscles as suspected.

Soccer Tots was not for my child!  It wasn’t run very well.  There were too many kids and not enough coaches.  The coach seemed bad at talking to such young kids.  He used complicated 4 step directions where 2 is a challenge for some.   In spite of my own observations, I was still worried that my child was lagging way behind.

Sheila too the rescue!  Our developmental therapist came to a session.  She observed and gave me some tips to help.  However, the best thing she did was reassure me that this class was advanced for someone who just turned 2.    She did all this on her own time. I was so lucky to have her.

I was going to tough it out with the program until the day Soccer Tots were moved to another field. The other field was to be shared.  On the other side of a curtain was a group of 7-8 year old kids.  A curtain is a sorry excuse for a barrier.  In fact, to my 2 year old, it was fascinating.  E immediately ran to the other field where the older kids were running drills.  The coach didn’t see.  He was busy with the class.  I quickly ran and got E right before a ball got too close.   I was livid.  My son could have been injured.  This was reckless. These were TOTS! They can’t trap a ball that is about to hit them.  They might not even be aware enough to move out of the way.

I complained and got my money back.  I hated to do it.  There were so many of my neighbors enrolled with their kids, and I longed to spend time with them at practice.  My social progress would just have to take the hit.

Meanwhile, in the back of my mind, the neurologist remained as a specter.

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2 Years Old?!

We were at E’s second birthday.  It seemed unreal.  In so many ways we were doing so much better.  Our party was in our basement.  It was just neighbors and friends, but it was nice.  I found a ball pit (complete with balls) on CraigsList and as predicted, Emerson tried to hide out in the ball pit for as long as possible.  He actually sat quite a while with his development therapist and our babysitter.  Looking back, these were people he trusted the most in life.

For whatever reason, E still hated “Happy Birthday” being sung.  I’m not sure its the song or the cheering afterwards.  Despite my attempts at warning the crowd, there was my child crying at his own party.  It never lasts long, since the next step is eating cake.

He’d come a long way since our first session with Ms.Sheila.  However, we were still desperately trying to get E to make sounds.  I mooed, baaed, and meowed and even barked with E just to get him to repeat.  We played the kazoo and the recorder.

One thing about having a development therapist is that they catch and see things, I would never notice.  E slouched.  E slouched a lot.  I kept wondering why he would sometimes do simple tasks with one hand.  Well his other hand was usually being used as a prop.  If Sheila hadn’t noticed the propping I don’t think I would have caught it.

Poor guy.  Most kids get to have little issues and no one ever comments.  All of E’s actions were under surveillance.  I’m not sure its fair to the kid.  On the other hand, I couldn’t imagine having the information in hand, and not acting on it.  There were many times in my journey that I just wanted to hide under a rock.  I wanted to run from conflict and act as if everything would just work itself out.  Time would heal.  God would heal him.  Hes so sweet and and innocent.  Yet, to know, was my blessing from God.  It was not divine intervention, but the intervention of those God sent me.  Science and reason were the tools I was given, and despite my fears, it was my job to use them.

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Needing a challenge

 

Our family was about 6 months into therapy.  I still wasn’t sure how or if to talk about it to others.  In many ways it was a relief to be honest and open.  In other ways, it set my son apart from others.   Of course, there is the well reasoned mid-western argument, “its nobody’s business but your own”.    I hedged.  I told quite a lot of people about speech therapy, but hesitated on telling people about developmental therapy.  Somehow development therapy carried a stronger stigma.  There was sometimes this awkward silence when I scheduled play dates, and I used the phrase, “we can’t make it Wednesday, E has therapy”.

In a bit of irony, it was the developmental therapy that was going so well.  Our therapist was amazing.  If E wasn’t grasping a skill, she would try a new angle, a new song, or a new book.   She was even gifted at teaching new signs for E to master. Meanwhile, we seemed stuck in a rut with speech therapy.  Its not that our therapist was bad, she just didn’t challenge E.  She once even said that she was afraid to upset him.  He was unchallenged and not making progress.  My husband was home for a day and observed a session.  He described it perfectly, “She’s not doing anything different than us, and we don’t charge a fee.”

This is where I must give the credit to the CDSA.  Our coordinator did several observations and brought up my problem with no prompting.  Paperwork started, but the real blessing was that the CDSA handled all the communication mess in terminating our former speech therapist.  It was a relief to not have to make that phone call.  Of course, there was the irritation in finding a new therapist.  A new list was generated, but shorter this time.  I didn’t have an recommendations so I choose the therapist with the most education and the most experience.

No one likes to change a  toddler’s routine, but sometimes things need to change.  E needed to be challenged.  I had to be brave and step out of the status quo.  I wasn’t doing my son any favors in providing him with a therapy that wasn’t working.  I am so lucky to have had the support system of the CDSA, my husband, and an experienced developmental therapist to make the transition and the decision easier.

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