New to this forum - need a hug.

[DanishMom]

Hello fellow mamas,

I'm a single mom to 9 yo DS. Three months ago he was diagnosed with PDD-NOS (most likely aspergers), ADHD, SPD and problems with fine motor skills. After a very hard decision process, I decided to give stimulants a chance. It's working very well but the autism symptoms have become worse.

I've recently started seeing a psychologist. She is excellent but it's hard. Today, I feel so overwhelmed with sadness and anger. I just want our lives and future to be easy (or just easier) - but they are not. I feel really lonely and need to reach out to other parents of SN kids.

I would love to hear how others have dealt with anger and sadness?

Thanks for reading!

[FarmerBeth]

HUGE hugs.  There's so much new information to process after a diagnoses, and I know that I sure had some feelings of jealousy watching people who had "easy" kids.  But honestly, it gets better over time as you and your child learn more about how to manage as yourselves and each other.  Even without an initial correct diagnoses (DS is in the autism spectrum, Asperger's would be the closest fit for him, too), all the various evaluations and therapies he had really worked.  It's tough getting through them at first (I felt like I needed a day planner on just one kid's life, and one of my other three kids was like that for a good while, too), and things are new and stressful, but then you gain skills to cope.

We had the same issue with stimulant medication and autism symptoms (although at the time they were labeled tic disorder and OCD symptoms).  We had some luck with Straterra, which is a non stimulant ADHD medication.  He is currently on SSRI's (for anxiety and obsessiveness) and no ADHD meds and is doing the best ever, but he may have been a case of the ADHD diagnoses not fitting, and his autism symptoms are definitely the larger issue.  I have heard of off label use of SSRI's for ADHD ((close family friend is a child psychiatrist) but you'd have to discuss this with a very trusted professional to see what you think of that.  Straterra's labeled use is an ADHD medication, and more generally accepted.  It tends to also slightly reduce anxiety.  Try having a talk about your med options with your child's practitioner.

I think it's great you are seeing a psychologist.  For me, I mostly dealt with the anger and sadness by practicing yoga, going to church and talking to my minister (yeah, I'm an oddball Christian yogi, but so was my main teacher!), spending time in the garden, and discussing here on mothering and with my friend who also has a son on the spectrum.  I didn't feel like my life was as crazy when I had some perspective from other people who had been in the same situation.

[DanishMom]

Thank you so much for your reply - and the hug.

Denmark is very different compared to the US when it comes to early intervention. Denmark is dominated by a different treatment paradigm (TEACCH) and treatment is not widely available. We went through a two year waiting period from the first time ADHD was suspected to the time he was finally diagnosed. He is attending a private school where the teachers know very very little about SN children. Still he would not qualify for special education schools do to budget cuts and I do believe he benefits from his current environment.

I'm not to happy about his doctor and it's almost impossible to get financial support to cover the cost of strattera. Only children with extreme side effects can get it.  

I'm a psychologist myself and having practiced GD all along, the need for changes when it comes to my parenting is minimal. However, the grieve is tough and I probably worry a lot because of my knowledge of autism and ADHD. Today I just felt like smashing things out of anger and frustration, but I didn't ;-) I just feel so powerless - especially knowing that the only treatment as of now is medical.

Unfortunately the health care system in Denmark has gotten worse and worse during the last ten years and all parents of SN kids need to constantly figth to get the bare minimum of services. It's a disgrace and it wears down the parents even more.   

[FarmerBeth]

I'm hearing you about the cost of Straterra.  We paid it out of pocket when we didn't have the private medical insurance and it was pretty difficult.  I'm glad the current medication costs significantly less, although we now we (ironically) have the medical insurance.  I guess we're pretty fortunate where we live.  If anything, it seems Canadians have even more access to special needs services than most Americans I encounter, and a lot of the Europeans I've met seem to say the same as you.  One thing that always helps regardless of special needs funding is simply keeping up good communication with you child's teachers and letting them know of any techniques that you know are helpful with your child. 

It's pretty tough working in a related field with an SN child.  I was already working with special needs kids and in parenting education before my son was diagnosed.  I spent a lot of time beating myself up for not recognizing warning signs sooner and have also done a lot of over thinking and over worrying about the diagnoses beyond what my son's functioning would warrant.  I have to remind myself all the time of in how many ways he is capable beyond what the diagnoses would imply.  I also had to force myself several times to step back and let the professionals working with my son just do their job.  I'm guessing (I'm OK if you tell me I'm wrong) that as a psychologist you might be dealing with some of this sort of thinking.  If so, all I can really recommend is to be gentle with yourself and take some time to unwind, maybe even get a lot of exercise if you are feeling really frustrated. 

Later!

[DanishMom]

Originally Posted by FarmerBeth 

I'm hearing you about the cost of Straterra.  We paid it out of pocket when we didn't have the private medical insurance and it was pretty difficult.  I'm glad the current medication costs significantly less, although we now we (ironically) have the medical insurance.  I guess we're pretty fortunate where we live. 

My xh doesn't want to split the cost and since private school is expensive too, I just can't afford it. Concerta is expensive enough. I'm unemployed at the moment because I'm unable to fit a very long commute with my sons needs and unemployment rates are crazy in Copenhagen.

If anything, it seems Canadians have even more access to special needs services than most Americans I encounter, and a lot of the Europeans I've met seem to say the same as you.  One thing that always helps regardless of special needs funding is simply keeping up good communication with you child's teachers and letting them know of any techniques that you know are helpful with your child. 

I love my son's teachers. Despite their lack of knowledge, they are wonderful and treat my son with great gentleness and kindness. Also, they have been very patient when they could in fact have thrown him out years ago.

It's pretty tough working in a related field with an SN child.  I was already working with special needs kids and in parenting education before my son was diagnosed.  I spent a lot of time beating myself up for not recognizing warning signs sooner and have also done a lot of over thinking and over worrying about the diagnoses beyond what my son's functioning would warrant.  I have to remind myself all the time of in how many ways he is capable beyond what the diagnoses would imply.  I also had to force myself several times to step back and let the professionals working with my son just do their job.  I'm guessing (I'm OK if you tell me I'm wrong) that as a psychologist you might be dealing with some of this sort of thinking.  If so, all I can really recommend is to be gentle with yourself and take some time to unwind, maybe even get a lot of exercise if you are feeling really frustrated. 

Oh yes, I have the same problem. I did not see the autism diagnosis coming, only the ADHD and SPD. But then again, the autism is getting worse as he matures and the social interaction is more complex and social expectations higher. He has two very close friends and I worry a lot that he won't be able to maintain those friendships or create others as they get older.

I am gentle with myself and confident that I'm doing a good job. I'm just so tired and overwhelmed. I need more time to myself but it's hard to get. Night time parenting is not exactly easy and leaves me with very little alone time. Sometimes I just feel like screaming "Damn it - NOT my child". I guess it's what we all want for our kids. For them to have the best life possible with a minimum of suffering.

Thank you so much. I greatly appreciate your replies!