Saturday, February 27, 2016

So what if there are two?

Alex and I attended a dinner put on last night by the boys' school for parents of kids with special needs.  There was a couple who had a 36 year old daughter with Rett's syndrome, which is a severe impairment, lifelong.  They spoke about their journey, things they helped, and how they have coped.  It was always interesting.  We sit among many different people.  There were people there with kids who do not sit up, do not walk, and will require lifelong care.  Alex is always a positive person; he tries to remind me that our boys should get better, that they should get jobs, get married if they want to, etc.  God, I hope so.  Alex finds it hard to relate to those who have kids with severe disabilities.  I just find it terrifying.  So they spoke A LOT about siblings, and the value of siblings, and how important siblings are for kids with disabilities, as it creates a normal life.  It requires the disabled sibling to be with typical kids, and may have to get out in public, participate in activities they may otherwise avoid.  Very interesting.  Then there is us.  We have two kids with special needs.  It feels unlucky, unfair, and to be honest, it totally sucks.  One thing I hate is when people say there will be a positive or this child will change you.  I honestly would never ask my boys to have to struggle so I can change, or so I can better myself.  I could have done that without a disability.  Very annoying.  The couple said to me "I can't imagine two kids with needs."  I was thinking to myself "I don't want to imagine your existence either."  I guess no matter what it is hard.  I am still thinking about a third child.  I am not sure.  It would be amazing to have a typical child.  It would be amazing to have any child.  Each of my boys benefits greatly from the other child.  They learn a lot from each.  I guess we will see.

Friday, February 12, 2016

Where have I been?

Well, it got harder to write.  I just am not sure exactly what to say.  We progress at a snail's pace.  Every new sound is totally amazing and worth the work, but it is slow.  Landon is saying yea and no all the time now, and I am so blessed.  Sometimes I pinch myself to really hear that it is true.  He is saying mama and do and go and me and more and all done and hi (hi at school only).  He is progressing, but there is so much more work to do.  We are still working on potty training and play skills and fine motor.  I sent an email out to try to find a private OT since I do think we need more OT.  Fine motor skills impact play.  So we will see.

Logi will  I am sure be diagnosed with Apraxia in April.  He is speaking a little more.  He is saying mama, more, and no, not consistently and coming and going. He is delayed overall. 

So damn cute and very frustrating.  I still forget sometimes that this is my life.  To me, they are not special ed- they are just perfect.  I try to remember that.

and I pray all the time.

Monday, December 28, 2015

haven't posted as much

I am still here.  I am usually thinking what more could I do?  Is there something i am missing?  I really, really wish we had a CASANA trained SLP nearby, because I would love an expert involved; however, Landon has good school SLPs and me, and I think speech is really, really hard for him. BUT I do see progress.  He is using a lot more signs. He is trying very hard to imitate.  He stops, looks at your mouth, and tries.  He really struggles to imitate.  He is saying "no" now everyday, not every time, but every day.  He amazes me.  His gross motor skills are coming along so well.  We went to an indoor huge play area today, and I don't think anyone knew he had a disability.  He was quick, strong, appropriate, and did everything everyone else did.  We are working hard on his speech and his play skills.  I am proud of Landon.

Logi is using his iPAD well at school and I just bought him his own and the school paid for the app.  Now I have 2 little ones with Ipads. Amazing.  Not what I expected, but I would not give them back if I could.
So we press on.

I promise to write more soon,


Wednesday, October 28, 2015

this is so hard

This journey is so up and down, but if there was a trajectory towards up, man, this would be easier.  Logi is moving up now.  He can use a cup, a spoon, and is imitating his peers.  He is very social.  He IS SO FAR BEHIND on Language-- so so so far, much further than Landon at this age, but yet, there is progress, so there is not as much worry.  Weird right?  He does not point, but he tries anything and isn't so afraid.  

Landon is so frustrated.  Being hit is becoming a constant thing.  We have the IPAD, signs, pecs, everything, but it doesn't say what he wants to say, and he is hitting.  He goes to time out and sobs.  It is a sick cycle.  I had to stay home from work today because I had a migraine because I cried watching him in school yesterday, cried in a meeting with his support teacher, etc.  She said- he is making progress.... to me, it is not enough.  It is so not enough.  I am going into high strung mode now, but i don't know what to do.  It feels like he is slipping through my fingers and I can't help him.  He is there all day now, and you pray school is the best, right?  It's scary.

It has been a stressful week.

Sunday, October 18, 2015

When there is really nothing left to say

Sometimes it is hard to write here.  Months go by without any huge progress, yet something here has changed.  If I could do anything right now besides be an SLP, I would be a grief counselor.  I am fascinated by the process- I feel I have a lot to offer, and I really benefited from that kind of support when my mom died.  So my progress is acceptance.  I have realized I have accepted I have two kids "with needs."  That does not mean there are not days of denial, or cringing thinking about a vaccine, or getting a pedicure when pregnant, or something like that- it does happen.  I have to just block it out, think of another person who did that and their child did not need services, and then I move on.  Denial, is not so much anymore.  I am aware of their needs, but most of the time, I see them as pretty typical little boys.  They fight, they hug, they love me, they love each other, and they love to be outside.  They are just little boys afterall.  I did the bargaining too, and I still have most people with kids hidden on fb, and I realize that is ok.  Sometimes the bragging is just too much for me.  I don't need to explain that to anyone.  So where is the acceptance?  The acceptance is knowing they both have apraxia.  Logan has hearing loss also, and Landon has sensory processing disorder.  Otherwise, the disorders are similar.   They both want to learn and want to be right with the other kids.  I think this disorder was in place when they were just little cells, little cells I loved so so much.  I am aware that progress is slow, but I am also aware that there is nothing else we can do, nothing.  So what is left?  for me- to enjoy them, to laugh with them, love them, and remember that one day, everything will be just as God planned it.  That has helped me a lot.  So it still hurts, I still cry anytime I talk about them and their struggles.  It still feels so unfair and difficult; however, I do know that no one else could do this as well as me.  And that feels good, like I am giving the boys the best shot at everything possible, and that God picked them for me.  There is really nothing better than knowing that life is going just as it was supposed to... not by my choice, but by someone who really has my best interest in mind somehow and I have to trust that.  I will never, ever give up on the possibilities of my boys.  I have to accept that we have struggles, but I also have to accept that we take a deep breath, and enjoy the ride, tears, laughter, too much therapy, and all....  <3

Tuesday, September 15, 2015

Day 2 of school

Landon is a champ.  He goes to school.  He cannot speak.  He tries so hard, but there he is, everyday. Therapy after therapy.  One thing I notice once you become a SN parent, is someone will say, "oh he did great." and I immediately think, are you saying for Landon or do you mean for all children?  I want him to be like the others in what he can do and achieve.  One day he will, but it's difficult.  I just pray for something to make a difference...

Wednesday, August 26, 2015

Please talk!!!

Ugh, summer is winding down, and we are not talking yet.  I guess that is it.  We are just not.  We stay the same.  I still think there is nothing more I can do, but I will keep thinking.  I have to look into essential oils.  I don't know.  i am just praying somehow, they can speak, someday.