Struggling to know what to do.

[disney-super-mom]

I feel like I've been on a long journey with Ryan (7 and dx with PDD-NOS at the age of 4). Some of it wonderful, but much of it heartbreaking.

The heartbreaking part has nothing to do with Ryan, really. It has more to do with everyone else, but it's really worn me down over the last few years.

You know, like:

1. Our medical insurance pays NOTHING for therapies/treatments for ASD.

2. We don't have the money to pay ourselves, so the only help Ryan has received and is still receiving is through the school district. He receives speech therapy, occupational therapy, and is in special services for reading, writing, and math. Our school doesn't offer any kind of social therapy that I'm aware of.

3. It seems as though no matter what I say or how I say it, other people, like doctors, teachers, therapists, and even friends and family, just DON'T GET IT.

4. The teasing in school has already begun, and Ryan is only in the first grade (although he's supposed to be in the second grade, but I asked that he be held back this year because there was no way he could grasp the second grade curriculum, compete with the other kids in P.E., and he was one of the youngest in the class due to his birthday being in June).

5. Ryan has no true friends at school. He has classmates that he plays with on the playground, but he's in special services so much during the day, and the fact that he is "different", makes it very difficult for him to make any true friends. It's sooooo sad because he's very social and wants friends.

I would say his best friends are his little brother (Luke, who's 3) and a third grader from another school (Jacob, who is my best friend's son). Jacob is great because he's pretty good with Ryan and includes him in activities. They're all going trick-or-treating together again this year, so that'll be fun.

I could go on and on. I'm sure most of you know what I'm talking about and where I'm coming from.

I'm at the point where I'm considering the homeschooling approach. I know that the older Ryan gets, the harder it's going to be for him, especially with the teasing. I don't know what exactly to do. All I know is I want Ryan to be happy, and I want him to have "real" friends that don't tease him, and I want learning to be fun for him and his learning environment to be a place where he feels safe and secure (so he CAN learn).

Can anyone with older kids with ASD comment on how it was for their child in school as they got older? What did you do?

 

[susieq76]

My sons aren't older- in fact they're younger but I just wanted to send you some hugs.

BTW- I don't personally think homeschooling is the answer. Maybe just add some social activities with typical peers? Soccer, football, bowling- whatever...

 

[Janet Hill]

I have a 9yo DS with high functioning aspergers. He too has no real friends and it's tough. He's awful at all sports, except swimming. We have him on a year round swim team and this seems to have been a big help. He is also involved in cub scouts.

Can't offer any real advice as we wrestle with all the same issues except for the academic ones.

 

[Karalynn]

First off...

I don't have any info on your sons dx, but I'm sure someone here will be able to offer some of their experiences. My ds is 8 and in 3rd grade, he has adhd and sounds a bit like your ds. He has several 'pull outs' a day, has a hard time making friends, OT, speech, math resource, reading resource.... I get it!! As far as friends at school, some kids are just more social than others anyway, weather they are typical or non. Some suggestion I have tried are to become more involved in school activities where you can meet some parents and maybe set up some play dates? My ds is just starting to show an interest in school friends outside of school.

You mentioned homeschooling, do you feel he is not getting a good education at school or is it more the 'picking on' issue? Either way, you should bring it up to the principal before you make any decisions. Kids pick on kids. It stinks, but it happens. I try to teach my ds that everyone is different in their own way and should never be made to feel bad about that.
I do have a couple friends that have decided to pull out and homeschool, they are happy with their decision. I personally don't think I could do it!! Homework is hard enough!!!

I'm not sure if I helped you at all, but if anything, you aren't alone, and I'm sure you are doing far more than you think for your son!! Its alot of hard work, but he is lucky to have such a great mom!!

 

[4fosterkids]

Hugs to you too! It is always good to know that most on this board understand what you are going thru. My son is 13 and although he does not have ASD, he has multiple other disabilities including Epilepsy, Metabolic disorder and some autistic tendency's. He is delayed and in special ed and has been since 1st grade. Life is not easy and some days I'm glad he has delays and does not always understand some of the cruel things around him.

My best suggestions are to network with other families in your area. Do you have an Autism support group in your area? Create your own social gatherings for him. Get him involved in activities thru your city parks & rec or other groups, teams, boy scouts, clubs etc. Our parks & rec has special ed basketball, karate, soccer, baseball and a performing group. You will find kids with all kinds of abilities across the board. The older they get the harder it is, in my opinion and I truly believe they need social skills daily, just so that they can do their best in their surroundings. I try to get my son out and about as much as possible so that he can use these skills. One of the best places for him is Disneyland, as he has to use many skills thru out his visit. This has helped him to stand in lines better (some days easier then others), manuevering thru crowds (when he used to just plow thru them), he is starting to use money skills when buying a treat, communicating with people that talk to him and so much more, plus it is a place that he absolutely loves to go to! Disney therapy should be covered by insurance if you ask me!
You also need to take care of yourself, so that you can be the best mom for him. It is tiring and exhausting, so take time out whenever you can and do something for yourself! It makes a difference.

I hope others have suggestions for you too!
good luck!

 

[RxforDisney]

What about church schools? I have no personal experience raising a child with ASD, but we have two autistic children in our church. My DD(4) is in Sunday School with one of them, and I keep the 3-4 year olds during worship service once a month. I know that the children in that class treat the autistic child very nicely, and are very patient and understanding with him. It is a small group, and we discuss his problems with the other children when he is not around so that they understand. I was very proud of my DD this week. This past Sunday, her teacher told me that they were playing with shaving cream (that is how they clean the tables), and that the boy with autism was standing behind her putting shaving cream all my DD's hair, and she did not say a word to him, and just let him do it for a long time. This is especially suprising to me because this is the same child that screams if I try to put her hair in a hair bow!

This may not be the solution, but I thought I would mention it. I am praying for you!

 

[4fosterkids]

wanted to add one more thing...
My son has some 8th grade boys that come from the typical classes and help out in his class, and his teacher said he loves it when they come "hang out" in his class. When he does good work with them he gets to go shoot hoops with them on the courts. His teacher just told me last week at conferences that this is a really good boost for him and he will work really hard with them.

 

[minkydog]

My heart breaks for our kids. My younger son is 11yo and is very low-functioning. He has no friends. He drools and grunts and kids make fun . it doesn't bother him at all. I die inside, but he doesn't care. My 20yo son is on the spectrum, not exactly autistic,but had tremendous difficulty socially when he was young. He never had a true friend until he was about 12yo. He was just too weird for the other kids. So he was a loner. I worried myself to death over him. His interests were not like the other kids so he had almost nothing in common and it drove him crazy.

Eventually things got better. High school academics were a nightmare and I have to admit, homeschooling John was our salvation. We started in 3rd grade and he graduated last year, with a few stints in public school in there. He hit bottome in high school with depression, learning disabilities, rebellion ON TOP of all the other spectrum-y stuff. Somehow he was able to connect with music and thats what pulled him through. He got involved with drama and ended up writing a madrigal play which his chorus put on as a fundraiser(it was hilarious!) He performed in anything he auditioned for. Even though he couldn't get his GPA above a 1.0, theater saved him. The other kids saw him in a different, more gifted/less handicapped light. I will always be grateful to the teacher to saw that in him and helped him find his way.

Now John is out of high school. He has a few close friends who are true friends. They "hang out" and work together. He didn't do well in his one year of college, but he has been quite successful working for Blockbuster. He has enormous knowlege of videos and games and uses discretion when he advises people. A lot of parents now seek his advice when they are looking for suitable things for their kids He writes music and plays his guitar. He's a fantastic big brother. John performs with a local theater group on weekends and is the life of the party.

Looking back on his childhood i feel sad. I know he felt left out and different and we didn't know how to fix it. Somehow finding that one thing turned him around. I hope that you all can find that one thing that lights his fire and that he will eventually have a good friend

 

[MomOf2DisneyKids]

I get it!!! My ds6 has PDD-NOS, so I can totally relate!! Here's a hug for you!! And one for me.

Hang in there...and try to remember to take care of yourself!!

 

[hookedup]

I feel like I've been on a long journey with Ryan (7 and dx with PDD-NOS at the age of 4). Some of it wonderful, but much of it heartbreaking.
We don't have the money to pay ourselves, so the only help Ryan has received and is still receiving is through the school district. He receives speech therapy, occupational therapy, and is in special services for reading, writing, and math. Our school doesn't offer any kind of social therapy that I'm aware of.

It seems as though no matter what I say or how I say it, other people, like doctors, teachers, therapists, and even friends and family, just DON'T GET IT.

The teasing in school has already begun, and Ryan is only in the first grade (although he's supposed to be in the second grade, but I asked that he be held back this year because there was no way he could grasp the second grade curriculum, compete with the other kids in P.E., and he was one of the youngest in the class due to his birthday being in June).

Ryan has no true friends at school. He has classmates that he plays with on the playground, but he's in special services so much during the day, and the fact that he is "different", makes it very difficult for him to make any true friends. It's sooooo sad because he's very social and wants friends.

I feel your pain (heartbreak pain)
My ds has social pragmatics group through speech therapy at school as part of his IEP. It's not as good as a true social skills class, but it's better than nothing. My son too wants to be social and it is sad to see him like a fish out of water with his peers. I worry so much about him and the years to come.
My son also receives adaptive PE in a group setting twice weekly with others.
Try to help keep your son focused academically as much as you can and see if you can do any one on one playdates (lasting not more than an hour) with someone his age. The social practice will help a lot. If he does find a friend to connect with you can request through his IEP to have that child placed in future classes with him.
Good luck and hugs from someone who TOTALLY understands!!!!

 

[disney-super-mom]

You guys are awesome. Thanks for all your words of support.

I guess it's just not my day. My DH just came home this evening and told me he lost his job. Oh boy...

Well, I guess life would be boring without lots of hills and valleys. I'm not sure though...are we currently going up a steep hill (hard) or going down into a dark valley (scary)?

Well, all I can say is DH and I cracked open a beer tonight. Here's to a brighter future for us all!

 

[Luv Bunnies]

My son is 11 and has Asperger's. He attended a special day class for preschool but has been mainstreamed since kindergarten. Yes, it's tough for kids with special needs to make friends. But I do think it gets easier as they get older. My son has been with basically the same group of kids for the past 6 years. More of his friends tend to be girls since they're more likely to be empathetic and sit and talk with him. The boys are all off playing sports on the field and my son's not really into sports. Most of the kids in his grade know him and don't make fun of him. He's still awkward socially and does a fair share of whining in class. But the teachers have all been great about helping him. If another kid makes fun of him (or any kid with special needs), they are dealt with quickly. He doesn't really have anyone that he wants to play with afterschool, but he gets invited to his share of birthday parties. When we gave him a party for his 11th birthday, 10 kids from his class showed up and were really wonderful to him.

I wouldn't recommend home schooling for a kid with any spectrum disorder unless school really isn't working out for them. So much of their difficulties are social and they really need the classroom to gain experience existing in a group setting. It can be painful to watch our kids trying to fit in but, in the long run, it helps them.

As for making friends, try to zero in on a couple of kids who seem to be good with your son. Introduce yourself to their parents at school some day and see if they might want to set up a playdate. If your son can even have 2 close friends at school who can relate to him, he'll do very well. I had one mom who told me her daughter was becoming a better person from knowing my son. She told her mom that she felt protective of my son and told other kids to leave him alone. One day my son said a kid said something mean to him but Sarah chased him off! Sometimes if you open up to other parents, you can help your kids form friendships that are good for both of them.

Good luck!

 

[dclfun]

I don't have any advice but to say that your post just broke my heart. I worked for years as an Occupational Therapist both in a hospital and in the school system and I know all too well how these kids can get lost in the cracks if someone doesn't fight for them. I'm just sending hugs to you that there will be brighter days. The only thing I would mention is if your son could benefit in the home from a companion therapy dog. They are not the same as service dogs but dogs are being trained for "social therapy". I also wanted to say your son is very lucky to have you as his Mom!---Kathy

 

[melomouse]

I hear you and am sending big hugs to you! My son Evan was Dx'd with Asperger's at 7, but by 4 we knew "something" was up.I lost my DH when he was 9, so I am a single mom trying to negotiate life on the Spectrum. He will turn 15 in January and is still in the public school system. although in a special program. The academics are Regents track, but small class size, his aide, service onsite and consultations between teachers and his weekly therapist at the Autism Center are all of great help.

I, too, intermittently consider homeschooling, but what I know about myself is that I could NOT handle it~ it is hard to deal with him on weekends and outside of the structure of the school day as it is. Others have brought up the advantages of services and socialization, too - they are right on! But I know the frustration with the system, IEP's, meetings, advocacy, etc - makes me want to pull him out and just do it myself!!!!

He got worse before he got better but since the onset of adolescence and the array of appropriate services, he's better. This summer he went thru a grueling 9 -hr. surgery and spinal fusion and was a bigger champ than any kid I know as well as most adults~!

• Take a moment when you can to count blessings - You have an early Dx, and thus treatment
• You have a DH with whom you can share a beer, even though he just lost his job.... It will work out..
• You are asking for support early on and will get it~~~
• There are new techniques and treatments for ASD every day and Ryan is young!

Your story touched me and you guys are in my prayers. Anytime we can do anything for you, let us know. There's lots of ASD websites and message boards around, too. Hang in there, kiddo - God only picks the very best of us to be moms of special needs children!

 

[Ambassador]

We have had to pro-actively organize playdates for one of our Little Delegation. We were thrilled when our first invite TO a playdate was extended after nearly eight years. We believe that everyone is busy, and outside of organized events, few playdates happen often. That's why we persist.

 

[playwright]

Have you tried music lessons? I remember one poster said about her son playing guitar, mine studies piano and loves it. It's provided him an outlet and an opportunity to socialize with other kids who also like music. Band, drama club, chorus, arts and crafts (try the library), community service, a church or temple youth group and martial arts are other things I would recommend. All the best to you and your family - please keep us posted.
PM

 

[karynnix]

I'm with you, sister! My DS8 has had some of the same trouble, but after spending some time with him in class, I learned that the kids in his class really like him! The reason that they don't play together is because Jack wants to play alone. Yes, Jack has been teased some, but it bothers me a whole heck of a lot more than it bothers him. One thing that we started doing in his class was that his teacher would put him with another student and let that student help him during the week. Every week, he has a different helper and it has really helped him to get to know the kids better. Maybe your son's teacher would be willing to try that.

 

[disney-super-mom]

One thing that we started doing in his class was that his teacher would put him with another student and let that student help him during the week. Every week, he has a different helper and it has really helped him to get to know the kids better. Maybe your son's teacher would be willing to try that.

Interesting that you should mention this because that what Ryan's teacher does too, except she does it more like every couple of weeks. However, she does it a bit differently. She assigns the kids to different desks every couple of weeks, so they get to sit next to, and get to know, someone else in the class. So Ryan gets a new "helper" every few weeks, which is a nice way for him to get to know some of his classmates, and for them to get to know Ryan.

 

[belle&beast]

I'm a speech pathologist and I work in preschool now but I have worked in elementary schools in the past. Ask your school SLP if she can group your DS with typically developing peers and work on social skills with him. I always saw kids with ASD in groups with kids working in just speech sounds because we could do play skills and turn taking and conversation during that time. I typically saw kids at least twice a week and took one session to work on these types of social goals.

Also, bring the teasing to the classroom teacher's attention and maybe she can do a lesson about accepting differences. I have seen lots of good come from teachers addressing differences in all friends at school.

Take advantage of the options in the school and be persistent. I love it when parents approach me with new ideas and let me know what works best for their kids. Lots of luck and pixie dust!

 

[maynard]

i totally understand! it is so heartbreaking to watch them struggle! my boys want friends, but have no idea that some of the things they do are insulting or annoying to peers. it's hard to know how often to point it out...you want to educate them so they can make better choices, but it doesn't sink in very fast, and you don't want to go over-board and nag them to death!

i agree with the poster who said not to home school...they need more practice, not less. i really agree with the poster who suggested lessons--my oldest gets a huge esteem boost with his ability to play violin! i also agree with the playdate poster. our playdate people just left! be prepared to do most of the hosting. people are intimidated because they don't understand how our kids "work". playdates give the kids social practice, you can give subtle or not so subtle suggestions and it gives our kids common ground at school--they can talk about what they did over the weekend, etc.

finally, i just wanted to say i understand! it stinks that insurance and our government/schools don't do anything to help--all intervention falls on the families.

chin up! keep us posted.

i noticed they are talking about adding a special needs section, thread, whatever (i'm so new at this). anyway, a few months ago, someone's autistic son had written...what about a spot for autistic kids to practice social skills? our family's "special interest" is WDW! just a thought.