just the mom

In the big world of special education, of services coordinators, special educators, therapists, goals, IEPs, sensory diets, and the like, who Am I but mom? I just got off the phone after an awful conversation with Landon's teacher.  His speech has not been progressing, but I have seen progress in other areas, such as kicking, climbing, with his peers, eating lots of new foods, staying with me, following rules, etc.  I wanted to check how he was doing.  She says he has regressed.  Basically she said he will make more progress next year, so what wait?? for 5 more months.  She was not friendly or nice about it.  "Nice chatting with you" she remarked.  I immediately texted back that she could have touched base with me anytime, not wanting for me to contact her, etc.  I said I know you are not the mother of a special needs child, but we work hard, we work tirelessly, and we are easily hurt.  I kill myself with Landon, it is not his fault at all and I tell him that all the time.  How insensitive could someone be.

I am not anybody but mom, but that is the somebody all of us should remember.  We can't treat kids like they are a number.   That's why I hate labels.  Oh, you know Alejandro, the autistic boy, the downs girl, etc.  That is what you hear.  It is sickening.  It happens too.  Oh, she is a 70 IQ, you can't expect much.  I want them all to know that I do NOT CARE, NOT one bit what Landon's scores say, or what they think they see.  What I see is a huge amount of potential, a career, a family, a happy life.  I won't rest for a minute till everyone else sees that, not even thinking about it.  It is very sad what special education is these days.  I hope to one day find a place where kids are seen for their potential, not their progress;  their smiles, not their voices; and most importantly, their determination, not some stupid number that means nothing.

so hard

What is hard is when you know.  I knew Landon had apraxia young.  I also thought by 18 months, there was a sensory piece involved.  I have known he was smart from very young.  I remember going to a play date with twin girls before Logi was born, so Landon was probably 17 months.  Landon was babbling dada the whole time we were there, and these girls really did not speak.  However, I knew there were no sensory issues, motor skills were great, nothing else, so I knew these kids would speak.  The next summer, we saw them again, and who was speaking in sentences and who wasn't. The kids are the same age.  The mother of the twin said to me, i am sure landon will talk early since he makes so many sounds.  I just smiled.  I already knew.

My neighbor has a just turned 3 year old.  At 2, he was not talking, and he started speech.  He had just a few words, but the words he had, he had. They never changed production and he was solid in them.  He also had amazing motor and play skills.  He was over today.  Guess who is not receiving speech anymore?  That boy.

It is hard because I knew all along.  I had really no idea it would be this severe or this difficult, but I knew.

God I pray that next year, Landon can be the boy speaking!

Significant progress

Almost a month ago, Landon had his Annual Review meeting, which is his yearly meeting to discuss progress/programs.  As I sat down at it, I was sort of annoyed, because his teachers were not there, but the support teacher was.  I kind of wanted someone who worked right with him to be there with me, for me.  As we began reviewing everything, I kept hearing the words, "significant progress."  Landon has made significant progress in this, in that, in everything.  Everything EXCEPT speech.  But still, progress is progress.  I sat there and they asked me what I thought, and all I could really say was "speech is everything to me.  Without speech, I don't know where he can go, what he can do. He has to develop speech."  Someone said sometimes he is stubborn and does not want to say something.  I immediately stood up for my son, and said, he wants to; he just can't.  I get very defensive about my baby.  I kept thinking what is significant progress to me, do I use those words at school with kids who are still functioning years behind, and maybe I do.  I do know that since starting this journey, I am very much more understanding and patient with my students, parents, stupid tests I have to give.  I have sat at meetings and said to a parent, "This number is really nothing, but I have to tell you xyz."  My favorite boy, Alejandro was nonverbal in K.  He is now speaking in long sentences.  He is still on the spectrum.  He is also a joy.  I would be so proud if he was my son.  I love him so much.  He is up for re-eval.  He won't do well on the testing because he doesn't always think in a standardized way; he just doesn't.  He also gets off topic all the time.  He still has made significant progress.  For me, I have been on this road and through this.  I had Landon signed up for a typical preschool, then maybe ok, maybe he will need teacher services, ok he is going to a special needs prechool, finally, for next year, he will have a 1:1 aide.  It is a process.  Maybe I have made significant progress in accepting this, but it does not feel like it. Significant progress for me is no more IEP. That is too lofty of a goal.  I just want him to talk.  I could care less about anything else. 
So that is that, significant progress.  I am proud of him, and hopefully the next big progress is speech.  Iep finalized. Summer school starts July 6 and he is going all day next year to preschool. He will be exhausted.  At these meetings and in dealing with teachers, etc, best thing to remember is: You are the expert on your child.  I know Landon more than anyone, and no one will tell me differently.  He has made nice progress and he is capable of so much.  Nobody better sell him short.

The voice

I am not referring to America's hit tv show, but instead, my voice, the one I have been blessed with at an early age, and am using currently to advocate for my boys.

I am a speech pathologist.  I love to talk.  I love to be with others and socialize.  I can assess someone's speech on the spot.  That's my thing.

My house is very quiet.  There is a lot of laughter, but it is not a talkative home.  I can drive home, talking to my boys, and hear nothing really.  I have to keep talking.

I am constantly on my husband, telling him to use longer sentences, to be engaging them more in conversation, even when no one can respond.

It doesn't matter.

We have to be there to model and teach our kids.

Twice this week, I had to contact Landon's school/teachers for concerns.  I really am not a big complainer, and I am very happy with Landon's program, but he can't speak up for himself, so I have to.

I emailed the SLP and said "Please understand-- I am my son's voice.  I have to stand up for him.  If I don't who will?  and then he will be lost."

Until my boys have words to speak for themselves,  I am on top of EVERYTHING, every aspect, and I won't rest as long as I am alive to do it.  There is not time to waste trying to please everyone.  My kids are my #1.



Have a wonderful weekend.

The sometimes this sucks post

I have a few feelings about having both my boys being "delayed."  One is that it would completely break my heart into a million pieces for Landon if Logan was talking now as expected.  I would feel so sad for Landon who is so aware and working so hard.  The other thought is wow that would be so much easier, what a nice language model for Landon, and of course, I would not want Logi to struggle.  They do get each other though.  This is our "normal."  I am not ashamed of them and they are not of each other.  The boys are always hugging and kissing and loving on each other.  They are blessed.

Look at Landon's therapy schedule:
 

Mon

Private speech 720-750Am

OT 9:00-9:39

Speech 9:30-10:00

 

Tuesday

Music therapy 8:00-8:30

9:00-9:30 Speech

10:30- OT

11:30 PT

 

Wednesday

Private Speech 720-750

 

Thursday

Music tx 745-815

Speech 10:00-10:30

PT 11:00-11:30

Friday

Speech 9:00-9:30

OT 11:00-11:30

 

 

I get overwhelmed looking at it, then think how proud I am of him for trying so hard. 

 

Logan's schedule is such

Tues: 8:00-8:30 PT

8:30-9:00 Speech

 

Wednesday

7:45-8:15 teacher

8:30-9:00 speech

3:00-3:30- ot

 

Thurs:

8:00-8:30 PT

 

Friday:

2:45-3:15 OT

 

I wish I could afford more speech for him, but Iwill be home with him this summer and I can do it.  Logan's ability to follow directions is so much more impaired than Landon's is/was.  He understands things the louder I speak, so maybe the fluid in his ears is impacting him.  He gets an ABR/tubes in ear most likely on June 9th.  I was able to say "Where is Landon?" and he is off looking for him. "let's go outside" off he went.  Yesterday I said "give this to Daddy." and he did, so there is some understanding.  Pointing is hard for him. He is now pointing more often for food, especially Kix.  He really likes to be with the other kids.

 

One weird thing I have been thinking of is the term "inclusive."  At the beginning, of the year, for Landon's school, we had to make a thing saying what we want for Landon as an adult, who do we want him to be.  I put a lot down, but the main thing I said was "happy and confident in whoever he is."  I saw some other kid in his class; the mother put down inclusive.  She wants him to be inclusive and then I thought she is being inclusive now by "letting" her kid in classes with kids like my kid.  I thought maybe people think this is so great, to be with special needs kid.  Look, guys, my little man is inclusive. He has friends in wheelchairs, w/ down syndrome, and there is a book in his class who uses an Ipad to say his name at circle time.  I don't know why that bothers me.  I don't want my babies to be the kids who make these kids more well rounded, or feel like we offer something to them they can't find in their own homes, since all their kids are typical. Boo. Maybe bad mood.  To me, my kids are just like anyone else.  They don't need to be "included" for the sake of it.  All kids, anywhere, just need acceptance. All people should be inclusive without being taught, but we know that is not the case.

 

We march on.

The I love them so much post

Becoming a mom is amazing.  It's amazing to actually feel your heart walking around outside your body.  That's what I always tell people.  You ache and are proud and have so much joy and sadness from a person who is not you, who does things you cannot control, but yet, it feels like it is you.  When my kids can't speak, I feel like it is me, the pain they feel, I feel.  That's why I don't sleep as much and worry constantly; it's love.  I love these two boys more than anything.  I would do ANYTHING for them.  Every mother says that, but I really do mean it.  I would do anything for them.  When I lost my mom, I just searched for a love to fill that void.  I have been thinking a lot about that this week as I am home with my boys, even my husband, all week.  We are very blessed.  We have a nice home, so many toys, cars that are reliable, we have access to many activities, and we have good family support.  I had a lot of fun with my boys.  Logan is turning into a big cuddler.  He has always been more independent, but he has been wanting to cuddle and rock for 20 minutes or so when he first wakes up.  I love that. Landon has been doing that forever and still is in my arms often, but Logi is such a sweet cuddler and I am loving this.  I love their unique personalities, their laughs, the fun they bring.  I look at Landon and I have spent so much time looking at him this week, and man, is he smart.  He is such a smart boy.  He is going to do amazing things in his life, and no one will be prouder than me, no one. I will be looking on with tears in my eyes each step of the way.  I can see it, I can almost touch it.  The first time he is able to speak a phrase, a sentence, speak to a peer, speak in front of a class, read on the announcements, etc.  I will be there, and I will know what it took to get him there.  That is something no one can ever take away from me.  And then there is Logan, he is such a social guy.  He wants to do whatever Landon does.  He won't do any easy puzzles, only the ones Landon touches.  He eats whatever Landon eats.  He is like his little shadow.  He does it with other kids too.  He is a little lover.  He is very silly.  He is going to be a popular kid.  Logan will always have a lot of friends and admirers.  I will remember him as this crazy, happy, silly, perfect baby, that I am so glad I became unexpectedly pregnant with, because he has helped Landon, and Landon has helped him, and together they are unstoppable.  The love a mother feels cannot be explained.  I think of my mom leaving us at ages 23, 21, and 19, and I know that wasn't enough time to her.  What is enough time?  My sister and I discussed this this week, and I said and I meant more than this, but I really want to live to see my kids speak, and I do, I really, really do.  My sister said she would like to live until the kids turn 30 at least. My mom wanted to see us graduate high school; she did.  There is never enough time.  We are promised only this day.  I know this week, I have made the most of them.

It's not your normal, but it is ours

Landon has been doing great.  I see improvements in everything but speech.  I will be glad for the improvements he is making everywhere.  He has just learned to jump down off something and even can jump onto something now.  This is great.  He was jumping on and off a stage the other day and off curbs etc.  He can jump very far when he leaps now.  so proud of him for that.  He is also learning to take his shoes off.  I mentioned that I wanted it worked out, and he is.  He has been able to take them off by himself if I loosen them a little bit.  Landon does not always initiate these skills, but once he practices them, he is so proud to get it.  He beams when he takes his shoes off.

We went to Target and the zoo yesterday morning.  I usually hate taking Landon to Target.  It is the only store I won't take him to, just not good in there, but he did great.  We walked in and I reminded him we were not going to look at the door, just keep walking.  We waved goodbye to the doors and moved on.  He stayed with me, helped put everything in the cart, and even looked at the toys.  He shows no interest in picking out a toy, but he did look and identified some when I asked.  I will take it.  I put his favorite book from school in the cart for his Easter basket and was so happy to find it.  Then we went to the zoo.  Usually Landon runs right in to the turtles and bypasses everything on the way.  Today I told him we were going to look at each exhibit, then get to the turtles.  He did awesome.  He was great looking at the ducks, and for the most part, stayed with me.  I got in the car and said to Alex, that they were really good.  He said all kids have bad days, speaking or not, but we hold them to high expectations, and that we do.  I thought I had to do a lot of verbal reminding and prompting, but I think that is ok.  It's not maybe what you have to do, but I do.

Today is Easter.  I have been talking up this silly bunny, and we colored eggs a couple times to make it easier to try, and we did 4 eggs each time. They tolerated it.  There were no tears like last year.  Neither were thrilled, but Landon even put some stickers on.  The basket.... Logan is still sleeping and it is 8am, so Landon and I went looking for the basket at 7am.  I did yes/no questions, with him, asking if this is a basket, or is a basket here?  He was able to nod his head yes when he saw it, but then did not want to look in.  He closed his eyes and hit me.  Of course Alex is ready with the camera and I was hit.  I told Landon if you look in, you may find something you like.  I told him I will wait until he is ready to look in the basket.  A minute went by, and he opened his eyes, and saw the book he loves.  He pulled it out, loved it, shook the eggs, and at least looked at and took out everything, with my support.

It is not your normal, but this surely is mine.

Happy Easter all.