It's really been far too long without an update. I could ramble off excuses:I had surgery,started working more often,vacation etc etc. However I just really haven't pushed myself to sit down and type. Anyways on with the updates.
In June the day before Coltons 3rd birthday he had his last sessions with Birth To Three. It was a sad but happy moment. Colton has come so far in the last year. It's hard to believe that a year ago I had a child who did not talk and had extreme sensory issues. He still definitely has a lot to get through but Birth To Three was a godsend. I will forever be grateful for getting him into Early Intervention Services. I know those who go without these services can have a much harder time making up for them. Let me backtack a bit.
In May Colton was tested to see if he would be going to developmental preschool. He was accepted into the program and will be starting school September 10th. I have a lot of anxiety about this. How can I be able to put my 3 year old on a school bus by himself and send him off to school? How will he deal with another person changing his diapers? How will he feel when he realizes he is alone? I'm sure I am overly worried about this but it's tough. Most parents get to have their kids at home until 5. I feel like I am having to go through this way too early. As with everything I know our family will persevere. It's just going to be a really hard adjustment. I worry that Colton will struggle with some reverting type behaviors.I worry that they won't understand him when he tries to talk,I worry he may not talk at school at all. All I can do is hope. I've been riding on hope this entire journey and I don't suppose that will change,ever. Now to talk about something great!
In July we took a family road trip to California. This was huge,we never could have done this before. Yes, it wasn't perfect but it was better than I ever could have hoped. Colton made it through amusement parks full of people,noisy environments. He slept in a bed that wasn't his. He had his entire routine thrown off and made it through it like a champion. My son is truly my hero.
I truly hope that I can get back on this. I feel awful for not "blogging" more considering this has been almost like a form of therapy for me. I also think it's important to tell Coltons story, and to share updates with friends and family. As always thank you so much for reading and for your support!
Another Opportunity To Share Coltons Story
I was approached with another opportunity this past week to share our experience with Skip Dynamic Partners Birth To Three program and I gladly accepted. I just thought I would share what was written with you all. Albeit it isn't anything new. I'm just so happy to share Coltons progress with anyone and everyone. It will always be a journey but being able to focus on the positive aspects and joys of it mean so much to me. Enjoy!
I first noticed something was different about my son Colton when he was
very little. I brushed a lot of it aside just telling myself I was
probably overreacting. He hit all of his milestones so I figured
everything was okay. When he was fourteen months old he started
whispering and by fifteen months he stopped talking completely. We began
to worry and expressed our fears at his eighteen month checkup. Our
doctor suggested waiting until he was two before we really investigated
this. It was during this wait time I watch many other strange things
begin to manifest in my son. After doing a lot of research on my own I
began to believe he was autistic. At his two year checkup in June I
insisted my doctor refer us to Children's Autism Center in Seattle. We
had our appointment there in August and they referred us to get his
tested for developmental delay and autism. We scheduled an evaluation
with Skip Dynamic Partners Birth to Three program for that September. It
was at this appointment my son was classified as developmentally
delayed. It was of course difficult to receive but we were just happy to
be able to start helping him. A month later we had him tested at a
center in Federal Way and he was diagnosed as autistic level two. We
began therapies with Skip in October starting with OT therapy. My son
has really bonded with his OT and we have watched so much growth and
development come from it. By the beginning of November he was saying
"Mama" and a few other words. It was at this time we also added on
Speech therapy. It is now March and I'm happy to report that my son has
grown from a child who was afraid of many sounds and other children, who
couldn't talk at all to now a child who is responsive to others and
becoming very talkative. We couldn't be happier. I'm sad our time is
growing short with Skip, they have truly been a godsend to us. If you
are interested in knowing more I highly suggest reading my blog at coltonsmama2011.blogspot.com.
I am proud of what my son has accomplished and I have so much hope for
his future. We owe a lot to the therapists at Skip, they will always
have a special place in our hearts.
In Closing
As always thank you for reading and for your continued support. I'm so proud of my son. Some days can be especially tough but I wouldn't change him "cure" him for the world. I embrace my sons autism. Without it he wouldn't be who he is. I continue to learn so much from him and others in the autism community. I have to admit I'm pleasantly surprised at how well we all support each other. The strongest women I have ever met I have met while on this journey and I am proud to be among them.
Spreading Our Story Around
Last month I received an e-mail from a woman who works at WAAA asking me if I would like the opportunity to share Colton's story with them and have it go on their website. I happily agreed. I will enclose the link to it here: http://www.washingtonautismadvocacy.org/updates/2014/02/28/starting-autism-journey/ I was so thrilled to have this chance to share our sons story and possibly bring others the awareness to what is going on with insurance problems in our state and possibly reach those out there who are struggling and need WAAA's help. Now onto a few updates in our life.
Updates
Colton has just been talking and talking. We are finally hearing two words at a time. Granted it's almost always because he's repeating what we have said or something he has heard on TV but I am so proud. It is such a joy to hear his little voice! I'm so proud at the progress he is making and how hard he continues to work on his speech.
We have set up his official testing date with the public schools for May 2nd. I'm nervous to see how it goes but I'm hoping that as with everything else so far we find new opportunities and chances for growth. His cognitive skills are so amazing and I hope they get the chance to see how brilliant he truly is.
While we are still on the subject of schools we have heard that we may have a possibility of getting him into a local private preschool. While of course this may be stretching it for us financially,I can only pray that we get this chance. I feel that Colton should be challenged academically not only taught life skills. He already can count to ten and recognizes all letters and is even attempting to spell. I feel I would be failing him as a mother if I didn't try to find the best fit for school for him.
In Closing
I'm keeping this one short but hope to be back here soon with more updates and positivity. I am so blessed to be Coltons mother. Everyday with him is a blessing. This doesn't mean it's easy, he can certainly be trying at times but we are weathering the storms and enjoying the rainbows that come after. I truly believe that because of Coltons autism I have grown so much as a person and gained so much insight and knowledge even just in these last few short years and I know it will only get better. The future can certainly take it's time but I am looking forward to it.As always thank you for reading and your continued support.
Roller Coaster Ride
The Downs
I may as well start with the negative so as always I can end on a better note. I guess I will start with the school tours.
Public School
So we went about a week ago to visit the public school Colton would be going to in the fall.Keep in mind I really went in there with an open mind however what I found was difficult to process. First off the classroom is in a portable. It isn't even a real classroom. Then let's look at teacher-child ratio. There are two aides for twelve kids. It's okay but certainly not ideal. While it seemed that it wasn't a horrid place I will be honest. What I saw was chairs with restraints and what appeared to be a school dedicated to keeping these kids in special education not helping the ones who have potential get eventually integrated.Of course I am being a little biased, I truly have no real experience with the public school system and their developmental delay preschools but I just left there feeling sick. I dislike how the public school system defines my child as low functioning when I know he is very high functioning, almost a savant in some ways. I also don't appreciate that he would be only 3 years old and in school five days a week for six hours a day.
ABA School
One week prior to our public school visit we went to tour an ABA school. Not only is this a school where Colton would receive all of his behavioral therapy but they are guiding children to be able to get into regular 1st grade. They divide them up by ability not how they fall on a "normal" scale. In short they would be teaching my son to read, not strapping him to a chair. Also the teacher-student ratio is three teacher/aides to one child. That in itself is amazing. Here comes the negative news, our insurance of course does not cover behavioral therapies including ABA,not only that the school doesn't even work with our insurance company brand. Oh and did I mention it's $1,600 a month if you are self pay like we would be?! Yeah well we are pretty much back at square one.
Upcoming Surgery
I found out recently that a surgery I've been putting off can no longer be put off. It could be as easy as just three incisions and two weeks of healing or it could turn into a much more major surgery with a recovery time of ten weeks or so. This of course means it will be very difficult to deal with my toddler especially because he is so attached to me and doesn't comprehend other peoples feelings or pain (essentially like many with ASD he lacks sympathy). Thankfully my husband will be able to take some time off but I'm just having a hard time picturing how this will work out for my son or I. Albeit without this surgery things could be so much worse for everyone so I'm just going to go in with positive thinking, it's all I can do.
The Ups
Colton continues to be bursting with new words. He is responding so well to therapy at this point my expectations and hopes increase each day. I am so proud of how far he has come and how hard he works. He is really into spelling lately. If he sees a word he spells it out, I could listen to him do that all day! He has started to become more confident in himself as well. I believe that he is meant for some truly great things. He has started to create real bonds, maybe it's only with adults but it's definitely a start. Raising children is hard work, raising one with special needs is indeed a journey but I wouldn't trade it for anything! What's normal anyways? :)
In Closing
Again thank you as always for reading and for your continued support. Autism awareness has come a long way but we still have a long road ahead but I truly believe that someday things will be so much better, more informative, easier. I also truly believe the key to this is education. Every time I encounter a "non believer" or a "skeptic" I do get upset but I also choose to take it as a chance to educate. Let us not forget that some people are just ignorant, what they don't know they fear, they don't understand. We as parents of special needs children are warriors, so are our children. Together we will fight their fight, even if it seems like an endless battle it is worth it! It will always be worth it.
The Trick Is To Keep Breathing
It again has been too long without an update. Life just goes by so fast and there is always to much to be done and never enough time to do them all. While there isn't a whole lot new to report there are a few updates worth mentioning. Beginning with our appointment with our DDD case manager.
At the beginning of this month we went forward with our application for our states Basic Health Waiver through DDD. We had a 3 hour appointment/assessment with our case manager. We of course knew this process would be a long shot but it is my belief that it would be a waste if we didn't try and apply for everything out there. Today I received a letter in the mail informing us that we were being denied the waiver. Our sons name will still go into the state database and maybe someday when funds are available we will have another shot. We can still appeal this decision but acknowledging the lack of state funding we know that too may be in vain.
A update on our insurance proves to still be tiring. They have continued to successfully avoid sending out actual documentation of a denial meaning we have no evidence to sue or appeal with. Our case manager through Aetna seems to have disappeared as well, I cannot seem to catch her. Well such is life, I'd like to step away from the negative for now and look at the positives.
While our time with "Birth To Three" is growing short we continue to observe much progress with our son. While he still cannot seem to manage two words at a time his one word vocabulary is exploding. Our son has such a desire to absorb everything. He has such a craving for education. I have no doubt this will prove to be a major strength for him. He continues to be obsessed with numbers and letters to the point where he now sees a word and spells it out letter for letter. It may prove fruitful to start trying to teach him to read. I truly believe the capacity is there. He is also very interested in his communication board and the PECS method. I continue to try and learn as much sign language as I can since even though he is unable to use signs due to his lack of fine motor skills he does learn them and I am able to use them as extra assistance when talking to him.
I am still having a heard time getting past the loneliness I have felt over the past couple of years. I thought by now I would be making "mommy friends" and setting up playdates for my son. This still may become easier once we are in developmental preschool and I am able to be surrounded by those in similar situations. It's not that I would be against friendship or playdates with typical children and families it's just that the opportunities don't present themselves. That with the major involvement with therapy sessions and the fact that I still have to try and make as much money working two days a week as I can to keep us afloat. It all doesn't leave me much time either. Well enough of the pity party I do have a wonderful son who continues to fill my life with so much joy. I've never learned or loved so much in my life and for that I am truly thankful.
In closing I would like to again as always thank you for reading this, for supporting us, for supporting Colton. We will never stop fighting. Not only for our son but for autism awareness, for all of our children who deserve everything the world and life has to offer.
